RE: brands of thyroxine and generics

[Guest guest]

Suzanne, you don't have to carry on experimenting in this way

with a product that clearly isn't working for you. You need to write to your GP

and tell him you are no longer prepared to put up with such ill health after

being first diagnosed over 25 years ago and them still not being able to

prescribe you the thyroid hormone your body so obviously requires. Ask for a

FULL thyroid function test to include TSH, free T4, free T3 and when you get

these results, post them on the forum together with the reference range. Ask in

your letter also for tests to check your levels of certain vitamins and

minerals. These are ferritin, vitamin B12, vitamin D3, magnesium, folate,

copper and zinc. Should any of these be low in the range, no amount of thyroid

hormone can be properly absorbed at the cellular level.

Tell the GP that you are aware that levothyroxine is a mainly

INACTIVE thyroid hormone that must convert to the active thyroid hormone

triiodothyronine (T3) and that it is T3 every cell needs - not T4 and that you

now want a trial using some form of T3, either synthetic, in combination with thyroxine,

or natural thyroid extract. Ask for a referral to an endocrinologist of your

choice.

Last, ask the GP to place your letter of requests into your

medical notes and tell him again, that you are no longer prepared to carry on

suffering because you are being denied the thyroid hormone that might help you

regain normal health. As far as I am aware, those people suffering the symptoms

of hypothyroidism are the only people being denied a choice of treatment if the

NHS recommended treatment of thyroxine-only doesn't work for them.

Good luck

Luv - Sheila

BUT I moved 4 years ago - and this surgery gives me a different generic brand

every time. I have just spoken to the dispenser and she has advised writing the

name of the required brand on the prescription. Trouble is as I don't have a

clue as to whether some are better than others.

Yet another experiment to undertake.. its never ending and exhausting.

Suzanna

[Guest guest]

Jane, we have no local thyroid support group in East Anglia, so

if you want to start one, please let me know and I will post details to all the

members of our Thyroid Support Forum. All you need do is to find a room

at a pub or somewhere else where you could all meet up - give me a date when it

is convenient for you, and we can then advertise it. It would be good to put up

an advert in your local library, slimming clubs, doctors waiting rooms, or a

small free advert in your local paper to tell folk about the new group as a way

to get as many new members as possible. Below are local TPA support Groups that

are already up and going:

Place

Name

Email

Bristol:

Delyth

p0shb1nt@...

Surrey

Maya

tangerinedream2000@...

Manchester:

Shekha

shekhaomar@...

Birmingham:

Glynis

arianrhod@...

Haslemere

: (nearest town Guildford)

Lynda

lkay@...

Derbyshire:

tinkerbell.3000@...

Chatham:

denib47@...

London:

n

julianj@...

Suzanna,

ask your " Doctor " to check your D3 levels - apparently D3 helps with

Hyper and Hypo regulation also depression.

I

live in East Anglia and I don't know of a good endo about here - I had to go to

Bristol to be told I extreme D3 deficiency.

I'm

in the same boat as you living on my own and rural location, if you want to

chat email me direct, we could do with a group in this area - Sheila if you

know anyone else or there is a group please pass on my email.

Thank

you

x

Jane

-----

Original Message -----

From: trickydog2001

thyroid treatment

Sent: Monday, March 28,

2011 1:31 PM

Subject:

Re: brands of thyroxine and generics

Sheila,

Please - do you know any GOOD private or nhs endo in the east anglia area. I am

having a really bad time - desperate still... I feel I am being bullied into

upping thyroxine - just from 25mcg per day to 25/50mcg alt days. I understand

about the t3/ t4 conversion and have been talked down by my doctor. Doctor says

must do this yet again before an endo referral.

After just a few days feel much worse - depression is awful... I live alone am

self employed - live in the middle of nowhere -and feel so worn down by it all.

Everything is such and effort and am getting nowhere.

Friends are saying change your doctor/surgery - easier said than done miles

from another surgery!

[Guest guest]

I would run a 100 miles from such an ignorant doctor. How

appalling is that. I would report him for saying what he did to you. It is we,

the patients, who allow these doctors to get away with saying such terrible

things and as long as we do nothing, we will continue to allow them to say and

do what they wish. What's wrong with you turning round to this same doctor and

turning on him by saying " pity you hadn't also, and then I might have a

doctor here who actually CARED about his patients and tried to give them back

their normal health… "

Do you really believe that staying with him, just because he

happens to be on your doorstep and you are out in the sticks, is going to make

you well again - think again. You would do better diagnosing, treating and self

monitoring your thyroid health all on our own, without him.

Please, don't let him get away with this - it is truly disgusting.

Luv - Sheila

>> I am frightened to alienate the doctor

further - when I mentioned that my mother had died at 45 - GP said pity I

had'nt cos I wouldnt be sitting there now! Appalling I know.

Alienate him? What about him alienating you? I'd complain about this doctor,

and move practices. I don't think you'll get anywhere else with him. I

appreciate you're far from another surgery, but i don't think you'll get anywhere

with this one.

chris

[Guest guest]

At the time he said that I was open- mouthed for a second or 2 then said ' I

should report you to the gen med council for that' at which he made light of it

etc...

Unfortunately I can never think of anything to say in these situations.. my

brain goes dead.

This isnt the first thing he has said that has had me worried -

After all he thinks I am depressed and should take anti deps... who would talk

to a depressed patient like that!

Thanks for the input. How on earht do I change my doctor??

Suzanna

>

> I would run a 100 miles from such an ignorant doctor. How appalling is that.

> I would report him for saying what he did to you. It is we, the patients,

>

> >> I am frightened to alienate the doctor further - when I mentioned that my

> mother had died at 45 - GP said pity I had'nt cos I wouldnt be sitting there

> now! Appalling I know.

>

> Alienate him? What about him alienating you? I'd complain about this doctor,

> and move practices. I don't think you'll get anywhere else with him. I

> appreciate you're far from another surgery, but i don't think you'll get

> anywhere with this one.

>

> chris

>

[Guest guest]

Hello Suzanna,

Feb11 Results TSH 7.76Free t4 14Free t3 4.3Antibodies 370I am frightened to alienate the doctor further - when I mentioned that my motherhad died at 45 - GP said pity I had'nt cos I wouldnt be sitting there now!Appalling I know.If I did not know from the above lab results that you are suffering from hypothyroidism (autoimmune thyroiditis or Hashimoto's disease to be precise) I would know it after reading the above .... only a severely hypothyroid person would still be frightened to alienate such an idiot of a doctor after having thrown such an inexcusable insult in her face AND apologize for a desperate post on a forum that is designed for people who are at their wits end.... You have absolutely nothing to apologize for, Suzanna ! Do you realize that for a comment like that you could have your GP struck off the medical register? He would deny it though, of course.... This doctor is a disgrace to his profession, Suzanna; run a mile !! What you should be doing is write a letter of complaint, but I know you won't and I can understand where you are coming from – you haven't got the strength to go through with it. Your adrenals are probably rock bottom. To fight your body needs cortisol, and I would not mind betting that yours hasn't exactly got that in abundance

I feel I am being bullied intoupping thyroxine - just from 25mcg per day to 25/50mcg alt days. I understandabout the t3/ t4 conversion and have been talked down by my doctor. Doctor saysmust do this yet again before an endo referral.Bollocks! You can ask for a referral to any endo of your choice at any time – no strings attached. Your GP is right about one point only – that you need a lot more thyroid hormone.... but it does not necessarily have to be Levothyroxine. From what you are saying Levo does not agree with you and this could have a number of reasons, not least that you might be intolerant to some of the fillers in Levothyroxine – but from what I can gather the most likely reason that you are not feeling well on it might be adrenal fatigue (point 3. below). Your adrenals are very likely exhausted and in such a case no amount of thyroid hormone will help unless and until the adrenals glands are sufficiently supported.

There are several conditions that go along with being hypothyroid that will stop his levothyroxine from working. According to Dr Peatfield, some of these conditions are:

1. The thyroxine dose is too low.

Often this is the case, and the doctor or consultant won't increase it, since the blood levels appear perfectly okay. Sometimes, though, the dose of thyroxine is quite high – 200 mcg – 300 mcg – but you still don't feel well.

2. Partial response to the single synthetic thyroxine replacement.

Your thyroid produces other hormones apart from thyroxine (which is a mainly inactive hormone anyway). These are T3, T2, T1, and most of us need them all. Without them our response is limited and synthetic thyroxine may not suit the system as well as the natural thyroid hormones.

3. Adrenal fatigue or exhaustion.

This is very commonly met with indeed. The production of thyroxine (T4), its conversion to the active hormone liothyronine (T3), and the receptor uptake (called `binding') requires a normal amount of adrenal hormones, notably, of course, cortisone. (Excess cortisone can shut production down, however.) Go to our web site www.tpa-uk.org.uk , click on 'Hypothyroidism' and then click on 'Associated Conditions' and read about the adrenal/thyroid connection there.

4. Failure of the 5 dei-iodinase enzyme.

This is what happens if the adrenals are not responding properly, and provision of cortisone usually switches it on again. But sometimes it doesn't. If the illness has been going on too long, the enzyme seems to fail. This conversion failure (in explicably denied by many endocrinologists) means the thyroxine builds up, unconverted. So it doesn't work, and T4 toxicosis results. This makes you feel quite unwell, toxic, often with palpitations and chest pain. (I refer to this further on.) If provision of adrenal support doesn't remedy the situation, the final solution is the use of the thyroid hormone, already converted, T3.

5. Receptor resistance.

Being hypothyroid for some considerable time may mean the biochemical mechanisms which permit the binding of T3 to the receptors is downgraded; the T3 just won't go in. With slow build up of T3, with full adrenal support and adequate vitamins and minerals, the receptors do actually come on line again. But this can be quite a slow process, and care has to be taken to build the dose up gradually. It is recommended to get the 24 hour salivary adrenal profile done through Genova Diagnostics which tests your cortisol and DHEA levels at four specific times during the day. TPA-UK get discount for thyroid and adrenal tests.

6. Food allergies.

The most common food allergy is allergy to gluten, the protein fraction of wheat. The antibody generated by the body, by a process of molecular mimicry, cross reacts with the thyroperoxidase enzyme, (which makes thyroxine) and shuts it down. So allergy to bread can make you hypothyroid.

There may be other food allergies with this kind of effect, but information on these is scanty. Certainly allergic response to certain foods can affect adrenal function and imperil thyroid production and uptake.

7. Presence of systemic candidiasis.

This is where candida albicans, a yeast, which causes skin infections almost anywhere in the body, invades the lining of the lower part of the small intestine and the large intestine. Here, the candida sets up residence in the warmth and the dark, and demands to be fed. Loving sugars and starches, candida can make you suffer frightful sweet cravings. (I wouldn't be surprised if it can synthesize a neurotransmitter, which causes such craving that you have to have chocolate, on pain of death.)

Candida can produce toxins which can cause very many symptoms of exhaustion, headache, general illness, and which interfere with the uptake of thyroid and adrenal treatment. Sometimes the levels – which we usually test for – can be very high indeed, and make successful treatment difficult to achieve until adequately treated. (More of this further on.)

8. Hormone imbalances.

The whole of the endocrine system is linked; each part of it needs the other parts to be operating normally to work properly. An example of this we have seen already, with cortisone. But another example is the operation of sex hormones. The imbalance that occurs at the menopause with progesterone running down, and a relative dominance of oestrogen is a further case in point – oestrogen dominance downgrades production, transportation and uptake of thyroid hormones. This is why hypothyroidism may first appear at the menopause; the symptoms ascribed to this alone, which is then treated – often with extra oestrogen, making the whole thing worse. Deficiency in progesterone most especially needs to be dealt with, since it reverses oestrogen dominance, improves many menopausal symptoms like sweats and mood swings, and reverses osteoporosis. Happily natural progesterone cream is easily obtained: when used it has the added benefit of helping to stabilise adrenal function.

When you have been quite unwell for a long time, all these problems have to be dealt with; and since each may affect the other, it all has to be done rather carefully.

- my doctor wants me to take anti deps for the anxiety/ depression and fibromyalgia and isnt happy because I continue to take St sWort.At time taking 25mcg thyroxine, St johns wort, coenz10, zinc, vit B, ranatadinfor stomach problems 150mg[now lowering], selenium 100.propranalol 20/30mg[approx a day]. Try to keep al meds low as poss.Well, to be honest, St. 's Wort alone is unlikely to cut it – by the sounds of it, your adrenals sound in quite a state – but antidepressants are definitely not the answer. You may need to do a private salivary adrenal profile with Genova to see just how exhausted your adrenals are and then act accordingly and start supplementing with Nutri Adrenal Extra (NAX). You are taking Vit B complex anyway and zinc and Co-Q10 ....that's good. In addition you need large amounts of Vit C. Start with 1000 mg per day and work your way up to as much as you can tolerate before getting diarrhoea... hopefully you will tolerate 3000 – 4000 mg per day or more. Vit C is balm for the adrenals J . Double your selenium intake to 200 iu, Suzanna.

Now – Ranatadin.... I can't be categorically since I don't know what those stomach problems of yours are, but often hypothyroid patients have too little stomach acid rather than too much. The thing is – symptoms for hypochloridia (too little stomach acid) and too much stomach acid are identical – so doctors prescribe antacids, which make matters worse. So you need to make absolutely sure that your particular problem is indeed too little acid and not too much. In most cases what is needed is Betaine HCl and not Ranatadin... please read the following links.

http://www.oralchelation.com/ingred/betaine.htm

http://dshedu.com/HowTo/Betaine/

I have prescribed propranalol for the anxiety and tension - but doesnt do muchgood.[Not good for underactive thyroid is it?]

No, not good L Propanolol is a beta blocker and it seems likely that once your adrenal fatigue is under control and you will be in a position to tolerate thyroid medication your "depression" will go away.... Depression is in most cases a result of low thyroid. The body and brain need thyroid hormone to function and you are deficient. It is a bit of a catch 22 situation though, because for your body to tolerate the thyroid medication it needs, first your adrenals need to be sufficiently supported. Thyroid hormone needs cortisol to get inside the cells. The golden rule is – treat the adrenals first, thyroid second.

Sadly our doctors – even if you went privately (apart from Dr. P.) – do not believe in adrenal fatigue. So you need to help yourself... and you do that with NAX, Vit C, Co-Q10, Selenium, Vit B complex and in addition you need to find out if you might be deficient in minerals or vitamins.

Ferritin 45 - I have been told the Ferritin is normal and fine.Not so! You have not given any ref ranges, but I can see even wihout them that your ferritin is too low – it should be around the 100 mark – so you need to supplement iron.

B12 825Your B12 looks ok. If you are supplementing that already, keep at it. You need to keep the level high.

Folate 15.7

Folate looks ok.

Cant ask for an Endo referral without knowing a GOOD one. Am prepared to goprivate for opinion.

Please ask Sheila privately for a list of good endos J - or travel and see Dr. Peatfield.... - and please do find yourself a better GP. If you let us know which your immediate area is, perhaps one of the other members can recommend a good one. Else just google available GPs in your area. You may have to drive half an hour or so to get to another surgery, but frankly, it's worth it - your current GP is not acceptable.

Warm wishes,

[Guest guest]

Correction:.....you need to make absolutely sure that your particular problem is indeed too little acid and not too much. In most cases what is needed is Betaine HCl and not Ranatadin... please read the following links.

I meant it the other way round, of course.... to check that your stomach problem really is due to too much acid and not too little.....

sorry - concentration is run down - I'm obviously lacking T3

love,

[Guest guest]

Thank you for all the information and advice. And sheila for same

Yes I am at my wits end and have been for a very long time. Mornings are the

worst time.

I am sure I do have exhausted adrenal glands - because on top of all this I went

through a really wretched time for a number of years [divorce etc etc etc - but

all with ornate brass knobs on!!].

I cannot take vit C at all - in fact so many foods cause a problem and pass

straight through. The stomach probs[heartburn and gastric erosions] started 2

and half years ago after same doctor prescribed anti inflams for pain and some

stronger stomach tablet for heartburn. Before that was the 'other way' and a

bit constipated... He also took me off of bendroflumethiazise? 2.5 which my

previous doctor had given me for high blood pressure. He said I didnt need them

as I had'nt had high blood pressure since joining the surgery 2 years before [of

course not I WAS ON THE TABLETS!}.

You are right - this doctor is not right... I really dont feel strong enough to

change surgery at the moment.. I have been through so many battles in the last

10 years...I have just run out of fight.

I will see if can get an appointment with Dr P. I have read his book just last

week.

Wonder if it would be worth getting an appointment with a private GP for an

opinion[ a friend knows one]...probably not.

Thanks again

Suzanna

>

>

> Hello Suzanna,

>

> Feb11 Results TSH 7.76

> Free t4 14

> Free t3 4.3

> Antibodies 370

> I am frightened to alienate the doctor further - when I mentioned that

> my mother

> had died at 45 - GP said pity I had'nt cos I wouldnt be sitting there

> now!

> Appalling I know.

> If I did not know from the above lab results that you are suffering from

> hypothyroidism (autoimmune thyroiditis or Hashimoto's disease to be

> precise) I would know it after reading the above [] .... only a

> severely hypothyroid person would still be frightened to alienate such

> an idiot of a doctor after having thrown such an inexcusable insult in

> her face AND apologize for a desperate post on a forum that is designed

> for people who are at their wits end.... You have absolutely nothing to

> apologize for, Suzanna ! Do you realize that for a comment like that you

> could have your GP struck off the medical register? He would deny it

> though, of course.... This doctor is a disgrace to his profession,

> Suzanna; run a mile !! What you should be doing is write a letter of

> complaint, but I know you won't and I can understand where you are

> coming from – you haven't got the strength to go through with

> it. Your adrenals are probably rock bottom. To fight your body needs

> cortisol, and I would not mind betting that yours hasn't exactly got

> that in abundance []

>

>

>

>

[Guest guest]

Re: brands of thyroxine and generics

Sheila,Please - do you know any GOOD private or nhs endo in the east anglia area. I am having a really bad time - desperate still... I feel I am being bullied into upping thyroxine - just from 25mcg per day to 25/50mcg alt days. I understand about the t3/ t4 conversion and have been talked down by my doctor. Doctor says must do this yet again before an endo referral.After just a few days feel much worse - depression is awful... I live alone am self employed - live in the middle of nowhere -and feel so worn down by it all. Everything is such and effort and am getting nowhere.Friends are saying change your doctor/surgery - easier said than done miles from another surgery!

[Guest guest]

Apologies Jane, I tried to edit your message to remove the

table, but managed to remove the lot - however, not before I had copied your

message (and removed the table). Here it is:

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of Fincham

Exotic Plants

Hello Sheila

I'd really like to do this, let me think about a venue and I'll

get back to you.

Love Jane

Sorry couldn't delete the panel

>Jane, we have no local thyroid support group in East Anglia,

so if you want to start one, please let me know and I will post details to all

the members of our Thyroid Support Forum. All you need do is to find a

room at a pub or somewhere else where you could all meet up - give me a date

when it is convenient for you, and we can then advertise it. It would be good

to put up an advert in your local library, slimming clubs, doctors waiting rooms,

or a small free advert in your local paper to tell folk about the new group as

a way to get as many new members as possible.