Re: New Mum being failed by NHS

[Guest guest]

Anyone?

>

> Hello all.

>

> I have been directed to this site in the hope that I can get help for my

health issues.

>

>

> I will give you a brief history of events and would be extremely grateful for

your feedback as to what action I should take regarding booking appointments and

medicating.

>

> I risk sounding like a loon but first I will stress the urgency and

desperation to get this matter resolved, I am a new Mum with an 8 month old

beautiful boy but my life is crumbling around me due to my hormonal issues.

Everyday I am getting worse and worry that I will not be able to care for my son

anymore if I don't get help.

>

> So here goes:

>

> Felt ill with various symptoms for 7 years. Tiredness, anxiety, headaches, GI

issues, weight loss, palpitations.

> Gave birth in May 2011. Good pregnancy and delivery.

> Two months post-partum became even more ill. Diagnosed with Non autoimmune

Thyroiditis. TSH 0.08 was told to 'ride it out' My symptoms were the same as

they had been for 7 years!

> November 2011, admitted to assessment unit at hospital as I was so ill.

Cortisol checked at 9 am 200 nmol/l. Stimulation test performed baseline 300

(highly stressed at this point) raised to 560nmol/l (range >550) so just over

cut off. ACTH 11.6 (range >10) I was promptly discharged but not investigated

for secondary adrenal insufficiency .

> December 2011, diagnosed Hypo TSH 17.0 was put on 25mg Thyroxine

> January 2012 Stopped taking Thyroxine due to it making me bedbound (felt like

I was being poisoned) TSH was at this point 6.95. My cortisol level was 156

nmol/l.

> I asked if I could be put on something else as I can not tolerate Thyroxine

and was told that there is nothing wrong with my TSH at 6.95 and that I didn't

need to be on anything anyway.

>

> I have now been discharged by the NHS Endo and my GP said he won't prescribe

anything other than Thyroxine and I don't even need to be on that. My TSH is

still 6.95.

> I have overlapping thyroid/adrenal symptoms and have now just been left to

suffer. I am really frightened due to my responsibilities as a parent and how I

will be able to manage if I carry on becoming worse.

>

> I have ordered a full thyroid panel including antibodies, Reverse T3, adrenal

panel and Vit D tests by Genova and will hopefully receive these tomorrow.

>

> I am aware that Dr P has no appointments left in Yorkshire (where I am) and I

simply can't go further with the way I feel and of course lugging a hefty 8

month old around.

>

> So I would be really grateful for any advice you could give me, where should I

go from here?

>

> Many Thanks

>

[Guest guest]

Hello and welcome,

I am so glad you made it here . I am - aka auto_immune.

I'll reply properly later today - in haste now, have to go out. But just to put your mind at rest for the moment.... on seeing your SST figures, you can safely rule out primary 's, which is an enormous relief. And try not to worry. There is always a 'plan B'.....

Talk later,

[Guest guest]

Thanks

I am having such a bad day, probably my worst.

I am just not thinking straight at all, forgetting thing, thinking horrible

thoughts. I'm still no further forward, got some bloods back today which showed

my TSH is now 5.1 and T4 in range but I feel worse.

These bloods showed: low potassium, low prolactin, high protein and globulin.

All this has confused me even more! I've had no feedback from Drs. They didn't

check my cortisol and put in a letter to my GP that I am 'convincing herself of

illness's' 'unremarkable consultation' was also stated.

I am having another stim test on monday morning so we'll have to see what comes

of that. Now I'm thinking I've got all this wrong, that my adrenals/thyroid must

be fine and I'll never find out what it is or I am just plain disturbed. Just

want it all to end.

x

>

>

> Hello and welcome,

>

> I am so glad you made it here [] . I am - aka auto_immune.

>

> I'll reply properly later today - in haste now, have to go out. But just

> to put your mind at rest for the moment.... on seeing your SST figures,

> you can safely rule out primary 's, which is an enormous relief.

> And try not to worry. There is always a 'plan B'.....

>

> Talk later,

>

>

>

[Guest guest]

Hello ,

Glad you found us. I was giving you as many clues as I dared, but seeing that they kept deleting my mails for lesser reasons than mentioning a support forum by its full name, I did not want to be too specific.

Thank you for the potted history and first of all – do not worry about being dismissed from this endo's services. You are better off without him or her. You could do with a better GP too, but one step at a time.

Your history is pretty textbook. Many hypos go through a period of first becoming hyper or even fluctuating between hypo and hyper. This is often not even noticed by the patient, particularly if this time coincides with natural hormonal changes like pregnancy or menopause. Because many of the hypo and hyper symptoms overlap – and also overlap with adrenal symptoms – it is in the beginning difficult to know where you stand, and, of course, blood results will nearly always be "normal" during this time. This is because for TFT figures to finally fall into the "red" with Hypothyroidism, at least 75% + of the thyroid glands function will have been destroyed, either by means of an autoimmune process, or the thyroid glands has stopped working properly for other reasons (usually genetic, thyroid cancer or old age) .

You had obviously a few years of being slightly hyper, then you fell pregnant and the pregnancy triggered your Hypothyroidism – as I said, all pretty textbook. The interesting part with you is that you had been diagnosed with non-autoimmune thyroiditis. Do you know which of the thyroid antibodies have been checked? There are 3 groups – TPO, TgAB and TSI . Since at the time of diagnosis you had a TSH of 0.08 I conclude that you must have been diagnosed with temporary Hyperthyroidism. I would be very interested to know what your FT4 an FT3 had been at that time, although this is now water under the bridge. What is worth finding out, however, is which thyroid antibodies they had checked to "rule out" autoimmunity. As you probably can tell, I am not at all convinced about the "non-autoimmune" verdict.

However – in December 2011 you were diagnosed hypothyroid with a TSH of 17. I think I have mentioned it to you before... whilst a "normal " TSH cannot be relied on to rule out Hypothyroidism, a "positive" TSH of 17 is a cast-iron diagnosis. You are hypothyroid – autoimmune or otherwise – and you will need thyroid hormone treatment for the rest of your life.... even if your GP doesn't agree. I am pleased that you have taken the initiative and ordered a full TFT with Genova; at least now we will find out if you have positive AA's (autoantibodies) or not and if there is a problem with rT3.

Just a thought about your adrenal test.... Now that I know the pre-and post ACTH figures, I can assure you that you do not suffer from primary 's and secondary 's is unlikely. I had gone into detail about all of that on the health forum, but because they kept deleting my mails to you I don't know if you had a chance to read my last one whilst it was still on there.

Primary 's means that the outer layer of the adrenal glands is permanently destroyed – such adrenals will never, ever, work again. It is a potentially life-threatening condition which is difficult to manage. Whilst your am cortisol level is low, there is no indication that your adrenal glands are getting destroyed. They are knackered, yes, but they are basically in working order.... and hopefully in time and with a lot of TLC they will recover.

Secondary 's is a possibility, but very unlikely. With secondary AD the adrenals are fully functional; they just get the wrong signals from the pituitary gland. But an SST result with secondary AD usually shows a healthy doubling, often tripling or even higher post cortisol figure. Yours just about doubled, which is the typical result of tired adrenals.

So your current situation is this – you suffer from low adrenal function and you are hypothyroid. You cannot tolerate Levothyroxine and your GP refuses to offer anything else.

So you now have a choice..... find a better GP and a better endo – or go it alone with the support of the TPA. All we can do is put you on the right road and hold your hand, but you are the one who has to decide.

Luckily for you, you live in Yorkshire and so does Sheila (list owner). So perhaps she or somebody else could recommend a better GP and better endo. If you write privately to Sheila, she will send you a list of `good' endos. If Birmingham were still accessible for you, you might consider Dr. Skinner (the only doctor apart from Dr. Peatfield who we can mention by name on this forum, as he is one of our medical advisors). You'd still need a referral letter to him from your GP, but hopefully this would be possible.

The alternative is to buy and try natural desiccated thyroid. Erfa is now no longer available without prescription, but Armour and Naturethroid from the US are, and so are Thyroid S and Thiroyd from Thailand. If you wanted to go down that road let us know and we'll guide you through the procedure – it is easy.

Now to the difficult part..... You need to find out your levels of some minerals and vitamins, because if you were low in any of them, thyroid hormone would not be very effective. You already have initiated your D3 levels, so that leaves the all important Ferritin, Folate, Magnesium, Copper, Zinc and Vit B12. Of those the most important one to find out is ferritin (which is stored iron). If you get nothing else from your GP, make him check your ferritin levels. Btw – whenever you post lab results on here, back them up with ref ranges, because every lab has slightly different ranges. You need a ferritin between 90-100. Lower levels need to be supplemented, even though they might be within the ref range.

And here come the supplements you will need – and start straight away, for at least one to two weeks before starting on any thyroid hormone. Golden rule – if you have weak adrenals, then first of all support the adrenals, then treat the thyroid. It is just possible that you can't tolerate Levo because your adrenals are too weak – so you'll need:

NAX (Nutri Adrenal Extra) – start with 1 tablet with breakfast – up by another tablet with lunch after 2 weeks. Go up another tablet every 2 weeks if needed. (you will feel when it is enough). Never take NAX after 1 pm or it will interfere with your sleep. – `best buy' see below:

Dear Members

I am delighted to tell you all that Marie and I have been working behind the scenes for some time now in trying to obtain discounts for both thyroid and adrenal supplements for all of our members. , from Nutri Ltd. has just telephoned me and they have now set up a special account for members of TPA-UK only and this will allow you to be given a massive 33% off these particular products.

As you cannot access the prices of the supplements from the Nutri Ltd web site (it is for Practitioners only) I have typed these out below. When ordering, do not use the 0800 telephone number given on their web site, instead, phone on the following number ONLY - otherwise, you will not get any discount. His number is 01663 718 831. will be there Monday through to Friday - 8.30a.m. to 5.30p.p.m., but if you can only order in the evenings or weekends, you can leave your order on 's answer phone, with your card details and he will send off your order as soon as possible and give you the 33% discount. If you also leave your telephone number, will be happy to call you back if you have any queries. When ordering (and please keep all these details safe) always quote the TPA-UK account reference number 3057428

Product Code

Size

Product name Description

Retail £

Discount price £

Plus Postage and Packing

3201

90

Nutri Thyroid (thyroid gland concentrate)

9.95

6.66

£1.70 single item

3201-A

180

Nutri Thyroid (thyroid gland concentrate)

17.50

11.73

£1.70 " "

3320

60

Thyro Complex (vits.mins.herbs)

21.15

14.17

£1.70 " "

3320-A

120

Thyro Complex (vits.mins.herbs)

39.95

26.77

£1.70 " "

3206

100

Nutri Adrenal (adrenal gland concentrate)

10.40

6.97

£1.70 " "

3205

60

Nutri Adrenal Extra (high potency concentrate)

12.95

8.67

£1.70 " "

3205-A

120

Nutri Adrenal Extra (high potency concentrate)

22.95

15.38

£1.70 " "

3360

90

AdrenoMax (vits,mins,herbs)

23.50

15.75

£1.70 (4 items or more free of charge)

Not sure if the above prices are current, but they won't have gone up by much.....

Furthermore you'll need -

A good Vit B complex (containing 50 mg of each B vitamin)

Vit C – start with 500 mg per day and gently up to bowel level.... you'll need eventually 3000 – 4000mg per day

Selenium 180-200 iu per day

Co-Q10 - at least 100 mg per day, more if you can afford it (it's expensive in the long run – I take 200 mg)

A good chelated multi vitamin (i.e. Lamberts `Mega Mineral Complex')

Chelated Magnesium Citrate 400 – 800 mg per day (has to be chelated or it will give you the runs)

And – if your Vit B12 level were below 800 - Solgar's B12 nuggets, 1000 iu per day

D3 : 2000 – 5000 iu per day (depending on your results, but they are bound to be low in the winter)

The above is the minimum requirement for every hypo person – if you were low in any of the minerals mentioned above, then you'd need to supplement those too.

None of the above you will be told by your GP or any endo.... but you need it nonetheless.

So this is where you start, . And the next step is for you to decide if you wanted to try natural thyroid (and if so, which one) or if you would rather ask your GP for a referral to another endo or to someone like Dr. Skinner (he is a GP and he does prescribe natural thyroid if it is needed – although only on a private basis, so you would not be gaining financially). Privately email Sheila to send you a list of endos. Some of the NHS endo also prescribe natural thyroid, but it's a bit of a battle usually. To my mind it is not worth fighting for getting natural thyroid on an NHS script. Natural thyroid does not break the bank.... the important thing is to have your doctor agree with the treatment and to be willing to monitor you.

Well, I think that's it for now.... hope you made it reading through all that lot ;o) – Any questions – just yell !

With best wishes,

PS - I just read your reply - I am sorry you feel so rotten today (could be the low potassium).... please list all of the lab results you now have from Genova with figures and ref ranges rather than saying something is high or low.... we need the actual figures

[Guest guest]

HiKate,

just a quick reply as I'm supposed to be cooking at the moment! I was ill for 5

years before being diagnosed, again, told I was 'normal' and that I'd just have

to live with my symptoms, so I know exactly what you are going through. Even

after diagnosis, thyroxine just didn't work for me. My bloods went into the

magic 'normal' range and I was still wlaking with a stick. Cue endo saying

'well, it's not your thyroid causing those problems as your blood tests are

normal.'

I self-medicated on NDT (natural thyrioid meds)until I got prescribed T3 by my

GP after pushing the matter for a long time. It is a long road to regaining

your health when things have got bad, but I am convinced with the help of the

kind people on this forum you will get there.

Sheila has lots of info, and a list of good docs/endo around the country who are

more sympathetic to other fortms of treatment epart from thyroxine, but I know

she's very busy at the moment so might take a while to reply.

One thing you should get checked is your iron levels - but ask for your ferritin

(measure of iron store) to be checked. I have a friend who was hospitalised due

to low ferritin even though she wasn't clinically anaemic. When you get your

results, don't accept 'they are normal' get the results, and the reference range

and post them on here for comment. You should be aiming for between 70-100. If

you have a very low score this will definitely affect your energy levels,

regardless of what else is going on.

Right, back to the cooker for me, sorry i can't write more, but hang in there,

we'll get your sorted out.

Nadia

>

> Thanks

>

> I am having such a bad day, probably my worst.

[Guest guest]

Correction !!

A good chelated multi vitamin (i.e. Lamberts `Mega Mineral Complex')

I meant to say multi mineral .....

Sorry,

[Guest guest]

Hi

Welcome to the forum.

I see 's already replied with a lot of helpful information. I would

like to mention that, although most people do very well on the nutri adrenal,

some don't (like me), so if this is the case then there are adrenal cortex only

products, such as: http://www.mandimart.co.uk/adrenal-support-56-c.asp

Are you being treated for your low potassium? What were the actual results? I

had potassium just above the low end of normal and I think it was contributing

quite a lot to my problems. It would be good if your GP could prescribe a

potassium supplement and help get the levels back up. Do you eat many

vegetables etc and get much potassium in your diet?

What were your actual prolactin, protein, potsassium and globulin results?

Someone may be able to help interpret them.

I can relate to the horrible thoughts, and all I can say is that these are very

likely symptoms of your problems and once you get treatment, should go. (Mine

have). We can wrestle with them all day, and sometimes, that's all we can do,

but once we get well, they go.

I'm trying to think what else might help you. I think you're getting tested for

Vitamin D (??); have you considered Vitamin A deficiency, too? Hypothyroid

people cannot convert beta carotene to Vitamin A very well. I had a test for

this and was low, well very low. Copper was low, too, getting both these things

up (and ferritin) helped me tolerate thyroid hormone. Before these various

nutrients, i could not tolerate more than 1/4 grain of thyroid for more than a

few days before feeling horrible. But correcting these levels has helped me.

Here is some information on Vitamin A deficiency:

http://www.hertoghe.eu/patients/index.php?option=com_content & view=article & id=99 & \

Itemid=137 & lang=en Down the left hand side, there is information about other

vitamins. If you were to take Vitamin A, i would take the preformed vitamin A,

not beta carotene. No need to go mad with it, but it might help (if you have

symptoms of vitamin A deficiency). This is a good brand:

http://www.puresto.eu/Vitamins/AV1-100/Vitamin-A-10000-I.U-from--Laborato\

ries.html

>Now I'm thinking I've got all this wrong, that my adrenals/thyroid must

be fine

TSH 5.1 or whatever it is isn't fine. It's too high for one thing, and how can

it be fine if you still have thyroid symptoms. Adrenal symptoms are adrenal

symptoms. Sure, other things may cause them, but it could be your adrenals

aren't being stimulated enough by your pituitary. I gather that adrenals need

enough thyroid hormone to work, too. They also need vitamin A and other

nutrients. Ignoring the bad thoughts, it sounds like you have physical symptoms

of thyroid and adrenal - doesn't that say a lot?

>and I'll never find out what it is or I am just plain disturbed.

Well we know there's a thyroid problem for a start. You suspect adrenals, based

on symptoms, so that's another thing. And we know for a fact there's low

potassium, that really won't help. Low potassium is linked to depression - did

you know that? So, take all these things together, thyroid, adrenals, low

potassium , possibly low ferritin, and low Vitamin A, D etc, and well it's no

surprise you feel dreadful and have these awful thoughts. So, you *are* finding

out bit by bit. Listen to yourself, as you are doing, and what your symptoms

are and what they match, and what they respond to. 'push where it moves'.

>Just want it all to end.

it will, bit by bit, as you get things sorted.

Can I draw your attention to this site:

http://www.hertoghe.eu/patients/index.php?option=com_content & view=article & id=133\

& Itemid=168 & lang=en

It may help identify where your problems lie. There is good information on

that site, and the author wrote a very good book available on Amazon (Hormone

handbook by Dr Thierry Hertoghe). There is also this questionnaire you can do

that will score where your problems are:

http://blog.saravanan.org/?p=40

With regards to the secondary addisons/adrenals thing, I was told that I had a

low functioning pituitary, having adrenal symptoms, but passing the ACTH test

etc. There are a lot of grey areas in medicine i think and people can argue for

or against certain things as there is no 'evidence'. However, we can see if we

respond to treatment, and that for me is good enough evidence. You know

yourself better than anyone; you know what is normal and what is not - you know

what's a normal bad day for you, and what is really not normal, not normal

thoughts. You have your suspicions about where the problems lie; you may well

be right (only one way to find out). Perhaps your doctors are just saying your

depressed and trying to desperately hook your hopes on some other cause. I

have been there, others have too. What I am trying to say is you know your

self and you should honour your instincts. If you had perfect results, no

deficiencies, no physical symptoms, then yes, it might look be worth considering

psychological problems...but is this true in your case...???

Chris

>

> Thanks

>

> I am having such a bad day, probably my worst.

> I am just not thinking straight at all, forgetting thing, thinking horrible

thoughts. I'm still no further forward, got some bloods back today which showed

my TSH is now 5.1 and T4 in range but I feel worse.

[Guest guest]

I'd like to say to you all especially thank you from the bottom of my

heart for all your advice! I have probably had the worst day of my life but it

has ended with a few angels visiting me on here! Thank you!!

I am totally exhausted now but will drop you all a line tomorrow with more

questions and a plan of attack if you don't mind?

Even though I still feel like death you have really helped my state of mind, I

am so grateful.

Onward and upwards hopefully eh!

xxx

>

> Hello all.

>

> I have been directed to this site in the hope that I can get help for my

health issues.

>

>

> I will give you a brief history of events and would be extremely grateful for

your feedback as to what action I should take regarding booking appointments and

medicating.

>

> I risk sounding like a loon but first I will stress the urgency and

desperation to get this matter resolved, I am a new Mum with an 8 month old

beautiful boy but my life is crumbling around me due to my hormonal issues.

Everyday I am getting worse and worry that I will not be able to care for my son

anymore if I don't get help.

>

> So here goes:

>

> Felt ill with various symptoms for 7 years. Tiredness, anxiety, headaches, GI

issues, weight loss, palpitations.

> Gave birth in May 2011. Good pregnancy and delivery.

> Two months post-partum became even more ill. Diagnosed with Non autoimmune

Thyroiditis. TSH 0.08 was told to 'ride it out' My symptoms were the same as

they had been for 7 years!

> November 2011, admitted to assessment unit at hospital as I was so ill.

Cortisol checked at 9 am 200 nmol/l. Stimulation test performed baseline 300

(highly stressed at this point) raised to 560nmol/l (range >550) so just over

cut off. ACTH 11.6 (range >10) I was promptly discharged but not investigated

for secondary adrenal insufficiency .

> December 2011, diagnosed Hypo TSH 17.0 was put on 25mg Thyroxine

> January 2012 Stopped taking Thyroxine due to it making me bedbound (felt like

I was being poisoned) TSH was at this point 6.95. My cortisol level was 156

nmol/l.

> I asked if I could be put on something else as I can not tolerate Thyroxine

and was told that there is nothing wrong with my TSH at 6.95 and that I didn't

need to be on anything anyway.

>

> I have now been discharged by the NHS Endo and my GP said he won't prescribe

anything other than Thyroxine and I don't even need to be on that. My TSH is

still 6.95.

> I have overlapping thyroid/adrenal symptoms and have now just been left to

suffer. I am really frightened due to my responsibilities as a parent and how I

will be able to manage if I carry on becoming worse.

>

> I have ordered a full thyroid panel including antibodies, Reverse T3, adrenal

panel and Vit D tests by Genova and will hopefully receive these tomorrow.

>

> I am aware that Dr P has no appointments left in Yorkshire (where I am) and I

simply can't go further with the way I feel and of course lugging a hefty 8

month old around.

>

> So I would be really grateful for any advice you could give me, where should I

go from here?

>

> Many Thanks

>

[Guest guest]

Ps - if you are not on any antidepressants, you might find 5-htp helpful. Maybe

Google it ,it is a supplement available from Holland and barrett and other

places. It is supposed to help raise serotonin. It can helpdepression etc.

Google it though if you decide to.try it in case it interacts with any meds you

are o.ln. it is not compatible with antidepressants

[Guest guest]

PLEASE DELETE MOST OF THE MESSAGE YOU ARE REPLYING TO AND ALL THE OTHER PREVIOUS

MESSAGES>

MODERATOR

Hi all,

I have dug out some test results and wondered if you could take a look at them

and tell me what you think? I've only included the levels that are borderline or

high and low, I've included all the TFT's I've had. Here goes:

Sept 04

TSH- 2.91

Ft4- 15.8

Oct 05

TSH- 14.69

Ft4- 1.7

Oct 11

TSH 0.08 (0.27- 4.2)

Ft4 21.4 (12.0- 22.0)

Ft3 5.9 (3.1-6.8)

Thyroid Peroxidase Ab 12 (0-34)

Thyroid Scan- No uptake identifiable in the region of the thyroid gland.

Vitamin B12- 416 (250-1000)

Serum Folate- 10 (2.5-18)

Serum Ferritin- 10 (20-270)

Serum LH 4.5- Above high reference limit (none stated)

Serum Oestradiol- 89 (170-1200)

FSH- 9 u/L

Prolactin- 85 (34-580)

Dec 12

TSH- 6.95 (0.35-4.94)

Ft4- 12.5 (9-19)

Ft3- 4.5 (2.6-5.7)

Parathyroid 52.78 (15.08-67.86)

Serum cortisol- 154 (101-536)

Serum urea- 2.4 (2.5-7.8)

Serum potassium- 3.9 (3.5-5.3)

Jan 12

TSH- 5.09 (0.35-4.94)

Ft4- 13.8 (9.0-19)

Prolactin- 81 (109-557)

Potassium- 3.5 (3.5-5.3)

Total protein 80 (60-80)

Globulin- 34 (25-34)

I've got a few questions if that's ok?

Firstly I have bought most of the supplements you recommended and

wondered should I take these all at once? Different times of day? With food? You

get my drift.

Do you still think this is more than likely autoimmune? I have found out that

the females on my paternal line have all got Thyroid problems including one

cousin who has hyoparathyroidism due to being born with only half her

thyroid/paras.

During the last 7 years my main symptoms complaint was GI pain and upset with

weightloss. This prompted many GI tests which only showed microscopic colitis.

Could thyroid problems have caused all this? I am now wondering if my thyroid

was over active on and off for years and now has just given up the ghost so to

speak. The reason I think this is that my loose bowels which I have had for 6

years have changed to constipation. Seems too much of a coincidence to me!

I can never put weight on no matter how much I eat when I have these `episodes'

and often loose weight too. I only ever get to a healthy 9 stone (I'm 5'7 and

currently 8 stone) when I feel well.

Someone on here mentioned they had used the max strength adrenal supplement and

had adverse reactions to it, she I buy the normal strength one instead to start

with?

Also I mentioned I have a SST test on Monday, I was planning on doing all of my

Genova tests on Tuesday. Is this a good idea or should I wait a bit till its out

of my system?

So many questions! If anyone is having a quiet night in with all the snow and

all I'd be grateful of your views?

Thanks x

>

> Hello all.

>

> I have been directed to this site in the hope that I can get help for my

health issues.

>

>

> I will give you a brief history of events and would be extremely grateful for

your feedback as to what action I should take regarding booking appointments and

medicating.

>

> I risk sounding like a loon but first I will stress the urgency and

desperation to get this matter resolved, I am a new Mum with an 8 month old

beautiful boy but my life is crumbling around me due to my hormonal issues.

Everyday I am getting worse and worry that I will not be able to care for my son

anymore if I don't get help.

>

[ED]

[Guest guest]

Sorry I don't understand?

>

> PLEASE DELETE MOST OF THE MESSAGE YOU ARE REPLYING TO AND ALL THE OTHER

PREVIOUS MESSAGES>

> MODERATOR

>

>

> Hi all,

> I have dug out some test results and wondered if you could take a look at them

and tell me what you think? I've only included the levels that are borderline or

high and low, I've included all the TFT's I've had. Here goes:

moderated.... old messages removed

[Guest guest]

Am I replying to the wrong messages? should I reply to the last message on the

tread? Sorry if I'm being clueless with brain fog or if I've done something

wrong.

I'm not sure how to delete the messages.

>

> PLEASE DELETE MOST OF THE MESSAGE YOU ARE REPLYING TO AND ALL THE OTHER

PREVIOUS MESSAGES>

> MODERATOR

>

>

> Hi all,

> I have dug out some test results and wondered if you could take a look at them

and tell me what you think? I've only included the levels that are borderline or

high and low, I've included all the TFT's I've had. Here goes:

[Ed]

this is all that's needed

[Guest guest]

So long as you reply to one of the messages in that thread (ie it has the same

title), people who are interested in that thread will be able to find your

message. It doesn't matter whether you are replying to the last message in that

thread or to one of the previous ones.

The point of deleting parts of the message you are replying to is to save the

messages becoming too long. If you can keep the most important points you are

replying to and delete the rest, that will make it easier to follow.

Hope that helps,

Miriam

>

> Am I replying to the wrong messages? should I reply to the last message on the

tread? Sorry if I'm being clueless with brain fog or if I've done something

wrong.

> I'm not sure how to delete the messages.

[Guest guest]

Hi,

Don't worry about the moderator bit too much, you're replying fine, they just

want you to delete most of the message you're replying to before you hit send

( automatically includes the message you're replying to and it can get a

bit long then...)

As to your thyroid issues, it looks like you're in the attack phase of

autoimmune thyroiditis. You'll be up and down like a yo-yo as long as your body

is attacking itself and there's something still to attack. I was hyper (weight

loss etc) before I knew what was going on and then became more and more hypo as

the attacks took their toll. The old school used to believe that taking

thyroxine and shutting off TSH would slow down the attacks - unfortunately they

don't seem to think that anymore (and I'm only talking 14 years ago when I was

diagnosed and given thyroxine).

Large hormonal changes trigger attacks, hence why you've been so bad postnatally

(I had a huge attack after my daughter was born and I was on thyroxine - I ended

up needing to double my dose). I also found that taking echinacea wasn't a good

thing, as I tried doing that to help with all the colds and infections I was

getting but it just stimulated my immune system in the wrong direction and I

attacked my thyroid more.

So what can you do? Yes, supplement with anything you are lacking but I think

you really need thyroxine... I hope you get some as I remember that awful

feeling of feeling deathly ill and being told that there was nothing wrong with

me...

Not as much help as the others but I just wanted you to know you're not alone.

Cat.

>

> PLEASE DELETE MOST OF THE MESSAGE YOU ARE REPLYING TO AND ALL THE OTHER

PREVIOUS MESSAGES>

> MODERATOR

>

>

> Hi all,

> I have dug out some test results and wondered if you could take a look at them

and tell me what you think?

[Guest guest]

Sept 04TSH- 2.91Ft4- 15.8Oct 05TSH- 14.69Ft4- 1.7Oct 11TSH 0.08 (0.27- 4.2)Ft4 21.4 (12.0- 22.0)Ft3 5.9 (3.1-6.8)Thyroid Peroxidase Ab 12 (0-34)Thyroid Scan- No uptake identifiable in the region of the thyroid gland.Vitamin B12- 416 (250-1000)Serum Folate- 10 (2.5-18)Serum Ferritin- 10 (20-270)Serum LH 4.5- Above high reference limit (none stated)Serum Oestradiol- 89 (170-1200)FSH- 9 u/LProlactin- 85 (34-580)Dec 12TSH- 6.95 (0.35-4.94)Ft4- 12.5 (9-19)Ft3- 4.5 (2.6-5.7)Parathyroid 52.78 (15.08-67.86)Serum cortisol- 154 (101-536)Serum urea- 2.4 (2.5-7.8)Serum potassium- 3.9 (3.5-5.3)Jan 12TSH- 5.09 (0.35-4.94)Ft4- 13.8 (9.0-19)Prolactin- 81 (109-557)Potassium- 3.5 (3.5-5.3)

Hello ,

Many thanks for typing out all the results – labour of love ;o)

What stands out straight away is your Ferritin – or lack of it!! Your Ferritin (stored iron) was seriously depleted last October. The test needs to be repeated ASAP together with serum iron and transferrin saturation% (making up a full iron status) and if the levels are still that low, your doctor should consider iron injections. With iron as low as that no thyroid hormone will work and it might explain why you feel so rotten when you take Levo.

Also – your potassium has a tendency to be on the low side (although not dangerously so).... and low potassium can also make you feel sick. A "good" level for potassium is 4.5, although it must not go above 5..... You can possibly address that with dietary measures.

Your B12 is not too bad, but I would supplement with Solgar's nuggets (1 a day) to bring the level closer to 1000.

Another question mark hangs over your high-normal protein levels.....

Total protein 80 (60-80)Globulin- 34 (25-34) http://www.drkaslow.com/html/proteins_-_albumin__globulins_.html

I do not know which relevance this has, but am pretty sure that a tendency for high-ish protein is relevant.

Now.... the question of autoimmunity. This is a difficult one – your TPO (Thyroid Peroxidase Antibody count is within the norm range ... but still in significant numbers within the norm range, which makes me wonder.... Antibodies fluctuate. So this count was negative... meaning there were no elevated levels of TPO in your bloodstream at that time – but there could be autoantibodies inside your thyroid gland. There is only one way of making absolutely sure and that would be a fine needle aspiration straight from the thyroid gland. But before such drastic measures I would repeat the test - and include TgAB. - If you get a Genova TFT, then this will be included anyway.

In any case they have only checked for TPO and not for TgAB..... and they might be positive. Without checking you won't know. Autoimmune thyroid disease would be confirmed when either of the AA's are positive.

And there is another issue.... your GI test confirmed Colitis.... and Colitis is an autoimmune condition.- and btw, yes, it is more than likely that there is a direct link between your colitis and your thyroid condition. The thing with autoimmune disease is that once autoimmunity has been triggered, there is no turning back the clock. Autoimmune conditions can usually be treated and – if you are lucky - be brought into remission, but they cannot be cured. And once you have one AI condition you are predisposed for another.

I guess what I am trying to say in a roundabout way is that yes, judging by your history, I suspect that your thyroid condition is of autoimmune origin, even though your TPO count was negative. But whether or not it is, is of secondary importance. You are without a shadow of a doubt hypothyroid (or- to be more exact, you suffer from thyroiditis), and yes, you've most likely gone through a hyper phase, now followed by hypo..... but there are other issues. – There is something fishy going on with your adrenal function. I do not know what. Your previous SST showed that your adrenals are capable of producing cortisol when they get stimulated with ACTH, which is a good sign – so it can't be primary 's. But even though the adrenals are capable of producing cortisol, they are not doing it unless they are prodded with pituitary hormone (ACTH). Your usual cortisol output is way too low and there must be a reason for that....

Your repeat SST tomorrow should be interesting. You've got all the info now – so remember.... no stress whatsoever! Arrive at the clinic in good time with an empty stomach (no breakfast! No stimulants whatsoever – only water is allowed). Stay as calm as you can. Lie down during the entire test. And make sure they take serum ACTH as well – so they should take 2 vials of blood – one for your baseline cortisol and one for serum ACTH as described in the endocrine handbook...

Samples for ACTH should be collected in purple topped EDTA tubes and stored on ice in transit and taken rapidly to the lab to be centrifuged...

Samples for cortisol are red topped and can clot.

Speak to the nurse or doctor and make sure that the ACTH will be done before they start the procedure – they need to prepare all the right kit. Once they have started it is too late for that.

Also – I hope your appointment is no later than 9 am- for optimal results....

Also I mentioned I have a SST test on Monday, I was planning on doing all of my Genova tests on Tuesday. Is this a good idea or should I wait a bit till its outof my system?That depends which tests you are doing, but if it were me I would wait a week. During the SST you will be injected with ACTH and that will probably bring on a healthy splash of cortisol, which then might have a knock-on effect on your thyroid function and make figures look better than they are – although I don't know this for certain... I would phone the lab technicians or Dr. Abraham at Genova and ask. Best from the horses mouth....

Firstly I have bought most of the supplements you recommended and wondered should I take these all at once? Different times of day? With food? Youget my drift.Good question -

Vit C at any time with or without food

B-Complex with food morning and lunch

NAX (if you take that) with breakfast and/or lunch – never after 1 pm.

Magnesium am and pm best with food (I think)

Selenium mornings with or without food

Mineral complex morning or evening with or without food

B12 best taken in the evenings

Q10 best taken in the evenings

BUT – there is your iron issue.... and it depends what is going to happen there. You might need injections, but if not, then you will have to take iron either around lunchtime or last thing at night – always with 1000 mg of Vit C (to avoid constipation). Others here will give you more specific instructions on that. I don't take iron, so don't know what or how is best.... but first of all you need a repeat test for a full iron status to see where you stand now. –But as the golden rule – iron has to be taken as far away from thyroid hormone as humanly possible .... at least 4 hours either side. You have to work out a schedule that will ensure this.

Someone on here mentioned they had used the max strength adrenal supplement and had adverse reactions to it, she I buy the normal strength one instead to startwith?Was the member talking about NAX (Nutri Adrenal Extra)? There is only one strength, but there is the NA version (Nutri Adrenal) which has half the amount of glandulars in it and none of the minerals and vitamins of the NAX. NAX is usually well tolerated, but some people do have trouble with it. If you need adrenal support (and you very likely do) then I would try NAX and see. If it doesn't suit you, then we'll have to think again. There are alternatives. You would start with 1 tablet for the first 2 weeks anyway before upping the dose.

But do not start on anything until you've got the SST behind you tomorrow – and do let us know how it went, will you ?

And last, but not least, your thyroid treatment.... wait and see what the SST reveals. Whatever happens, your body needs thyroid hormone in some shape or form, but your adrenal situation has priority for the moment. We first need to find out what is going on there, and then address the iron level and then your thyroid needs to be addressed.

With best wishes,

[Guest guest]

Thank you both so much for your advice and guidance! I am going to follow all

your advice to the letter!

I questioned the Dr about the Ferritin back in Oct and he just said 'thats

normal after having a baby' I did not really believe him as I was 6 months post

partum by then.

I've been battling for so many years to find out what is going on with my health

and I really hope (even though its been hell) that I have stumbled across what

it is. For so many years my abdominal pain, weightloss/ tiredness/palpitations

have been awful. I was always told it was 'IBS/ viral colitis' which I

personally think is a trash can diagnosis for all unexplained abdominal issues.

My pain was never due to foods/stress/lack of healthy lifestyle etc. It would

come on for months and then just disappear along with all my other symptoms.

I'm sure the 'colitis' is to do with the thyroid/adrenals as I can now recognise

that the pain comes and goes depending on where my Thyroid levels are.

I am really looking forward to getting cracked on with this treatment plan.

Because I have just been left by the medical professionals I've seen I just want

to do something pro active!

Cat- Thanks for the lesson on how things work on here! I thought from the

message from the moderator 'oh no what have I said? Hope they don't kick me off!

ha ha thats by anxious mind at the moment talking! Have I done it right this

time?

Thank you both so much again. By Mum has my baby for the night (yes sleep!!) so

I'll be as chilled as possible for the test tomorrow. Not looking forward to

missing my morning cuppa though!

I'll keep you updated

x

>

> Hi,

>

> Don't worry about the moderator bit too much, you're replying fine, they just

want you to delete most of the message you're replying to before you hit send

( automatically includes the message you're replying to and it can get a

bit long then...)

>

>

[Guest guest]

Hi

My name is and I am going through exactly the same. Since pregnancy I

have exactly the same symptoms and feel like I'm getting no where.

I have been on t4 and t3 for ten years but pregnancy has made me go all over the

place. My baby is now 14 weeks. I too am getting the Genova adrenal test done

I'm hoping the results will send me in the right direction as to why I am

feeling like this.

I hope you get the help and support you need. Of there is any questions please

post them and we can all help.

>

> Hello all.

>

> I have been directed to this site in the hope that I can get help for my

health issues.

>

>

> I will give you a brief history of events and would be extremely grateful for

your feedback as to what action I should take regarding booking appointments and

medicating.

[Ed]

[Guest guest]

Hi !

I'm so sorry you are going through the same thing, I honestly wouldn't wish it

on anyone! Even the Drs who have been awful to me and thats saying something!

Its so hard feeling like death when looking after a baby isn't it. I hear

friends with babies saying 'I'm sooo tired' I just wish they could spend just

one day in my shoes and they would shut up pretty quickly. My boy only sleeps

for 30 mins in the day and has done since he was about 2 months old so it's one

loooog day!.

Anyway I hope the genova test comes up with something that you can work on, its

strange how we wish for abnormal tests isn't it.

I went for the SST test this morning. They ended up injecting me with three

things I'm assuming to check my pituitary- cortisol/thyroid and gonadothrophin I

think? Also I notived on the blood slip the consultant had but PROLACTIN in

capitals with lines underneath it. My recent blood test showed I was quite a lot

under the range so I'm not sure about how or what they are testing for with

that, maybe someone knows on here?

I had a really strange feeling of nausea for a few minutes after she injected

me, nurse said that the thyroid stimulating one would have done that. But all

day since then I have had much more energy and a strange feeling of wellbeing!

very weird don't know what to make of that. Any ideas anyone?

ps- , what did you have? boy?girl? was this your first?

katie x

>

> Hi

>

> My name is and I am going through exactly the same. Since pregnancy I

have exactly the same symptoms and feel like I'm getting no where.

>

[Guest guest]

I am absolutely gob smacked! I picked up a copy of my medical records today and

guess what ! My thyroid antibodies were 149 (0-50)!

This test was done on December, nobody informed me, nobody from my Gp's passed

this onto the endo I last saw, and for the past god know how long they have been

saying you 'only have acquired thyroiditis'

And another few things which are shocking. When I said in earlier posts that my

TSH was 17 this was WRONG! the endo told me this himself and the lab work shows

TSH 70!!!!!

I have also found out that I have been either anemic or borderline anemic since

I was 16 years old!!! No one thought to tell me this.

For me this is conclusive evidence that I have had the same illness since my

teens. Its so emotional to read these records, when I was 14 I explained the

exact symptoms I have now and the Dr has put 'obviously an anxious teenager' it

has brought tears to my eyes. No one ever tested my thyroid function. I have

been through most of my life with this, I know that now.

Can anyone tell me if the anemia could be related to the thyroid? and also does

this mean I have Hashimotos then? I can only ask here as as I mentioned before

my Endo doesn't want to know. As far as he is concerned I have 'acquired

thyroiditis' and thats it. I can't believe all this! And as far as they are

concerned I don't need medicating! phew.. that felt good to get off my chest!

>

>

>

>

>

[Guest guest]

, please will you remove most or the message you are esponding to and leave

just a line or two before clicking 'Send'. I have done this for you on this

occasion. Luv - Sheila

_______________________________

Anyone any idea? Like I said I have no help from my endo and just want to get

this straight in my head. In your experience's do you think I have Hashimotos?

could my anemia be due to the thyroid problems? Any thoughts I would be

grateful.

>

> I am absolutely gob smacked! I picked up a copy of my medical records today

and guess what ! My thyroid antibodies were 149 (0-50)!

>

> This test was done on December, nobody informed me, nobody from my Gp's passed

this onto the endo I last saw, and for the past god know how long they have been

saying you 'only have acquired thyroiditis'

>

[Guest guest]

Hi,

I doesn't really matter what you call it... acquired thyroiditis, Hashimoto's or

autoimmune thyroiditis... at the end of the day your body is attacking your

thyroid and will continue to do so until there is nothing left to attack. You

feel so awful after having your baby because the rapid change in hormone levels

triggered an attack.

You need to be on thyroid replacement. And you should aim to get your TSH

suppressed as this slows the attacks. If you get no joy from your doctor or endo

demand another opinion (get a list from Sheila of good ones if there's one you

can be referred to in your area), the information you have got already

constitutes a failure of care!

Oh, and yes, Hypothyroidism and anaemia go hand in hand. One of those things

that you think our bodies would have more sense in - but not. Supplement your

iron levels too, something like a gentle liquid iron type of supplement would be

good.

HTH and keep fighting for your health, it is worth it when you get there!

Cat.

>

> I am absolutely gob smacked! I picked up a copy of my medical records today

and guess what ! My thyroid antibodies were 149 (0-50)!

>

[Guest guest]

Hi ,

I am absolutely gob smacked! I picked up a copy of my medical records today andguess what ! My thyroid antibodies were 149 (0-50)This test was done on December, nobody informed me, nobody from my Gp's passedthis onto the endo I last saw, and for the past god know how long they have beensaying you 'only have acquired thyroiditis'

This is interesting as it proves two things.... that a negative TPO count (I assume we are talking about TPO?) in October can turn into a positive TPO count in December.....This is what I have always suspected, but you are the first who confirms that for me. I have always been suspicious that this is not the whole story when there is a substantial – but not quite positive - amount of AA's (autoantibodies).

And yes – a positive count of AA's confirms a diagnosis of Hashimoto's....And another few things which are shocking. When I said in earlier posts that myTSH was 17 this was WRONG! the endo told me this himself and the lab work showsTSH 70!!!!!That was in December 2011, I guess? It now really makes me wonder what on earth has been going on. If you look at your October labs –

Oct 11TSH 0.08 (0.27- 4.2)Ft4 21.4 (12.0- 22.0)Ft3 5.9 (3.1-6.8)Thyroid Peroxidase Ab 12 (0-34)Thyroid Scan- No uptake identifiable in the region of the thyroid gland.Vitamin B12- 416 (250-1000)Serum Folate- 10 (2.5-18)Serum Ferritin- 10 (20-270)Serum LH 4.5- Above high reference limit (none stated)Serum Oestradiol- 89 (170-1200)FSH- 9 u/LProlactin- 85 (34-580)

..... how can a TSH move from 0.08 to 70 in the space of 3 months? Is this physically possible ????? (honestly, I do not know) – on top you presented with a ferritin of 10 and that got pushed aside as "normal" for a woman post-partum, even though this was 6 months after giving birth...... frankly, I am baffled, . Either there has been a mix up with the blood results, or your doctor is incompetent. I would want to get to the bottom of it all.

I have also found out that I have been either anemic or borderline anemic sinceI was 16 years old!!! No one thought to tell me this.

Does it state that in your records? For me this is conclusive evidence that I have had the same illness since myteens. Its so emotional to read these records, when I was 14 I explained theexact symptoms I have now and the Dr has put 'obviously an anxious teenager' ithas brought tears to my eyes. No one ever tested my thyroid function. I havebeen through most of my life with this, I know that now.

The thing with all autoimmune conditions is that an individual is born with the deleterious genes and therefore the susceptibility to developing the condition at some point in his or her life .... but for any autoimmune condition to become overt it needs a trigger. In theory a person with those deleterious genes can go through life without the disease ever becoming active..... this is, however, the theory.... the practice is different.

The list of trigger factors is as long as your arm, but in case of thyroid disease it is usually either a hormonal change or some viral or bacterial infection that sets the wheels in motion. So puberty, pregnancy, menopause, glandular fever, chicken pox, excessive stress... you name it.... all have the potential to trigger autoimmunity. This means that the immune system goes haywire. Something happens, the immune system can no longer cope, it breaks down and the antibodies which are designed to protect our bodies, go mad and attack not only foreign intruders (as they should), but they now attack everything in their path, regardless of whether it is `self' tissue or foreign matter - like viruses, bacteria, cancer cells....things it is supposed to destroy. Once the antibodies have been "reprogrammed" and become autoantibodies, autoimmunity cannot be reversed. The person will always have that auto-immune disease, and having one increases the risk for developing others. This is why the presence of thyroid autoantibodies (as opposed to having just normal antibodies) is diagnostic for Hashimoto's.... whether it is in an acute state or a subacute state, you still have the disease... it might just not be active at any given time, as your change from a "normal" count of TPO to an elevated count demonstrated.

Can anyone tell me if the anemia could be related to the thyroid? and also doesthis mean I have Hashimotos then? I can only ask here as as I mentioned beforemy Endo doesn't want to know. As far as he is concerned I have 'acquiredthyroiditis' and thats it. I can't believe all this! And as far as they areconcerned I don't need medicating! phew.. that felt good to get off my chest!

If the elevated count of TPO in December is not the result of some other unsuspecting person, then yes, you have Hashimoto's. And yes, there is a definite link between anaemia and hypothyroidism. You NEED to have your iron status re-checked, – this is of the utmost importance. If your ferritin is still as low as it was last October, then something needs to be done about it PDQ.

Whether your thyroiditis is `acquired' or autoimmune or whatever.... it makes no difference to the actual treatment – only.... you ain't gettin' any ! I would fire this endo on the spot and find a better one. Email Sheila privately to send you a list of good endo's. There should be a few in Yorkshire.

How did the SST go last Monday?

Love,

[Guest guest]

You WERE right! I'm confused about the labs too. But it definetly says in Oct

TSH 0.08 and Dec TSH 70.00

I've had such a busy day that I have not managed to really get my head around

everything (my baby started crawling today!)

On Monday they ended up injecting me with three

things which I think were to check my pituitary- cortisol/thyroid and

gonadothrophin. But on the blood slip the consultant had put PROLACTIN!. I'm

assuming thats due to my low prolactin on the last tests I had.

I felt really nauseous for a few minutes after she injected

me. But for the rest of the day I had much more energy and a strange feeling of

wellbeing! Not too much energy but enough to enjoy my day, I felt normal! very

weird don't know what to make of that, obviously its from the cortisol but not

sure whether I can predict the results from it.

I'm going to try and get my GP to do another iron check asap, but tonight a big

21 day matured steak and a glass off orange will be going down by gullet!

Thanks again ! x

>

>

> Hi ,

>

>

>

> I am absolutely gob smacked! I picked up a copy of my medical records

> today and

[Guest guest]

Hiya,

I have managed to find out my ferritin levels in January they were-

20 (20-270)

They still say this isn't a problem? I have posted another question regarding an

incident I had yesterday, wondered if you might have some advice for me?

From the supplements you recommended I managed to get all but the magnesium last

week. i was feeling ok but yesterday took the magnesium. I felt awful!! Stomach

pain, back pain (around kidneys) my limbs where so heavy and went numb. Felt

like I could just pass out at any moment.

What do you make of this? I wondering about my adrenals. I have still not heard

anything from the Endo so assuming the tests I had on monday are not back yet. I

feel rotten today.

x

>

[Guest guest]

> I have managed to find out my ferritin levels in January they were- 20 (20-270) > They still say this isn't a problem? I have posted another question regarding an incident I had yesterday, wondered if you might have some advice for me?> > From the supplements you recommended I managed to get all but the magnesium last week. i was feeling ok but yesterday took the magnesium. I felt awful!! Stomach pain, back pain (around kidneys) my limbs where so heavy and went numb. Felt like I could just pass out at any moment.> > What do you make of this? I wondering about my adrenals. I have still not heard anything from the Endo so assuming the tests I had on monday are not back yet. I feel rotten today.

Hi ,

yes, your ferritin is still much too low and you'll need to supplement... but perhaps you should first wait for the results of your SST first and then find a good endo with whom you could discuss the entire case. I am somewhat alarmed about your reaction to Magnesium. If you have such a reaction to Mag, then your level must have been high. Has it ever been checked? Are your kidneys working ok (have you got any renal blood results ?)

Definitely stop the Mag and wait for the SST results.....

love,