Re: Do people recover from Hashi totally?

May 8, 2011

Hello Carole and welcome to the forum

The first thing I would recommend for you to do is to buy Dr. Peatfield's book "Your thyroid and how to keep it healthy" and to read it from cover to cover.... you need to understand what is happening to you, and from your mail it seems to me that you are confused about the whole issue and that no doctor has bothered to explain things to you.... so here comes J:

The first and foremost thing to learn is that although it is possible to diagnose hypothyroidism with an elevated TSH, it is impossible to manage the treatment of hypothyroidism by looking at the TSH alone. You say that 50 mcg Thyroxine got you into a mild hyperthyroid state because your TSH was 0.1 ... well – I've got news for you J.... a suppressed TSH in a medicated patient does NOT mean you are hyperthyroid – not by a long shot. As the TSH goes down, the FT's go up; and only above their respective ref ranges elevated FT3 and FT4 would indicate a hyperthyroid state. It has nothing much to do with the TSH. So you probably unnecessarily dropped back on your thyroid medication, because hyperthyroid you were not . J

Many doctors talk a lot of nonsense when it comes to thyroid conditions and their treatment, and you have to learn to manage your condition according to how you feel... because your body is a much better indicator than any blood results. If things do not feel right, chances are that they are not right – whatever your doctor or the lab results say.

....dropped me back to 25 but I but before I could beretested I went into hospital in Feb with heart probs.

Put on beta blockers - didn't suit so on calcium channel blocker instead.Research led me to discover the heart issue could be the result ofovermedication, so I went back and Dr admitted overmedication can cause it, sawwhere I was heading with this, and was going to stop my 25mcg on the spotleaving me taking nothing. I said I would prefer to try 12.5mcg and see whathappened.

I don't know what kind of heart problems you have experienced, but it is more likely that your heart problems were due to low thyroid hormone in the body than anything else. Untreated or insufficiently treated thyroid conditions cause heart problems... with proper thyroid treatment most heart conditions normalize. Beta-blockers are usually more of a hindrance than a help, although I should not generalize, since I don't know what your heart problem was. To suggest that 50 mcg of Levothyroxine should be responsible for a heart issue is a bit steep IMHO.... 50 mcg is a baby dose and unless you have a really serious heart condition, it is not even high enough to get the heart of a frail elderly person excited... again, it is wrong of me to generalize, but honestly, you say your doctor `confirmed' this.... – frankly... - yes, `overmedication' could make an existing heart condition worse, but in order to know if you were indeed `overmedicated', he should have checked your FT3 and FT4.... there is no way anyone could confirm `overmedication' on the strength of just a TSH. The TSH is a pituitary hormone, not a thyroid hormone .... and you clearly were not overmedicated – you were under-medicated.

Forget the TSH – it is meaningless in a medicated patient and even more meaningless in a person who suffers from Hashimotos, because due to the autoantibodies the TSH will fluctuate and you can't draw any meaningful conclusions from it. Your FT4 was 12.7 and that is much too LOW and it would have been useful if your GP had checked the FT3, which is the most important parameters if you want to check progress of treatment.

Do people recover from Hashi? I thought it was lifelong thyroxine, so amconfused.

If you mean by `recover' if there is a cure – the answer is `no', there is no cure. If you mean `recover' as in `getting better' with medication, the answer is `yes' – with proper and sufficient thyroid hormone therapy, lots of vitamins and minerals, preferably a gluten-free diet and lots of time you can regain your former health.

Hashimoto's is an autoimmune condition. It means your autoantibodies will – in due course – destroy your thyroid gland; and `no' there is nothing you can do about it. But this process can take many years and during those years you are likely to go through ups and downs. Ups when you are feeling well and on top of the world – downs whenever you experience an attack of your auto-antibodis on your thyroid gland. The way to keep those attacks `down' is to optimally medicate your condition and switch to a gluten-free diet (even though you might not test positive for celiac disease). Gluten molecules look almost identical to thyroid molecules apparently, so your thyroid auto-antibodies mistake them for thyroid tissue and attack and destroys them... which means `warfare' in the intestines with the discomfort to foot.

Bottom line.... When you are diagnosed with Hashimoto's disease, forget the TSH – it is not a reliable marker for how you are doing. Contrary to common belief, a suppressed TSH on its own is neither dangerous nor does it indicate Hyperthyroidism. The only important indicators for monitoring your progress are the FT3 and FT4. The TSH would only tell you something if it went UP (despite thyroid medication).... then something would be wrong. As long as it stays down and/or is suppressed and the FT's are not above the ref range and you feel well, you will not be hyperthyroid.... and yes, you will need thyroid medication for life.

You may, however, have to ask yourself if Levothyroxine suits you and you feel well on it. If it does – fine. If it does not, you may want to think about a combination of T4 and T3 – either synthetic or natural.

What you want to achieve is to feel well and have optimal thyroid levels.... and that usually means an either suppressed or very low TSH and FT3 and FT4 in the upper third of their respective ref ranges. That would be the ideal scenario.... to get there can take time and a lot of experimenting though. Your current medication is much too low, as your FT4 proves. Your FT should be just about double of what it was at last count, but you also need your FT3 tested, which should also be in the upper third to top of the ref range. – btw. when you test your TFT's, you should NOT take your morning dose before the blood draw, else the results will show unrealistically high levels due to the tablet you have just taken. You need to stop your thyroid medication for 24 hours to see accurate blood thyroid levels, but you can take your dose immediately after the blood draw.

I hope this helps – any questions, just shout J

Best wishes,

May 8, 2011

Hello

thanks for reply, what a lot of lovely info and advice, brilliant and much

appreciated.,

you said that >>. a suppressed TSH in a medicated patient does NOT mean you are

hyperthyroid<<

GP, said it does, but what does she know lol. She said I had an abnormal

result of low tsh with normal range Ft4, that means overmedication, so I was

hyper and thyroxine got lowered. She didn't mind where Ft4 was as long as in

the range. Thats why I said I was hyper.

I already had Atrial Fibrillation diagnosed, but self managed it, and the

recently developed heart prob is SVT, which provoked and took unbroken turns

with the AF, sending me to hospital where it was diagnosed. I really don't

want to remain on calcium blockers if SVT is result of med and will stay

settled with thyroxine reduction, Id rather feel tired than have my heart

playing up,, but don't know how I can tell unless I stop the blockers. I do

get it that most Drs don't know much re thyroids, that's why Im among experts

lol..

How can I medicate by how I feel when thyroxine takes weeks for body to adjust

to new doses so I cant know daily whats happening? plus I have CFS with

same/similar symptoms, The Dr tests both TSH and Ft4 but NOT FT3. My

antibodies were higher than range at first, then rose a bit more but fell the

third time and are now lower again so they are in normal range. Something I

didn't think could happen, and that's why I asked if people recover (as in cure)

from hashi. With normal antibodies AND reducing med dosage it seemed maybe I

would!! (well I can hope).

Thankyou again for all the help

Carole

>

> Hello Carole and welcome to the forum []

>

>snippy snippy>>>>

>

> The first and foremost thing to learn is that although it is possible to

> diagnose hypothyroidism with an elevated TSH, it is impossible to manage

> the treatment of hypothyroidism by looking at the TSH alone. You say

> that 50 mcg Thyroxine got you into a mild hyperthyroid state because

> your TSH was 0.1 ... well – I've got news for you J.... a

> suppressed TSH in a medicated patient does NOT mean you are hyperthyroid

> – not by a long shot. As the TSH goes down, the FT's go up; and

> only above their respective ref ranges elevated FT3 and FT4 would

> indicate a hyperthyroid state. It has nothing much to do with the TSH.

> So you probably unnecessarily dropped back on your thyroid medication,

> because hyperthyroid you were not . J

>

May 9, 2011

You can recover from Hashis partially by getting rid of your anti-bodies. Many people have achieved this by going on a gluten free diet or following the Iodine Protocol. This may have two outcomes. You no longer have an AB problem, but if the Protocol or the gluten free diet stop the Hashi ABs may start again (with everything that this entails!!). You may still have a thyroid operating below par because of the damage from the anti-body attack even if it stops. In that case you will still be hypothyroid and probably remain so unless you are very lucky.

Both scenarios are unlikely to mean a return to life as you knew it before your illness because you will have dietary constraints or hormones to take. But, it is my personal experience that you can still make yourself feel a heck of a lot better though!

Many people who have Hashis also have a problem with converting T4 to T3. They convert it to RT3 and this can make them feel very ill. Many people who have "normal" labs, still have a problem in this area. Most doctors don't check for RT3 and tell you that you are OK and it's the menopause or you're going round the bend.

Many, many doctors do not understand thyroid hormones. I had heart flutters at least once a day and quite often twice a day until I started doing the Iodine Protocol. One of the first things to stop when I started with IP was the heart flutters. The heart needs iodine. I believe it is used in the drug amiodorone (not sure about the spelling) to stabilise the heart beat of people who have had heart attacks. Find out more at www.optimox.com on the iodine research page. There is also an iodine health group. I was told by my specialist that I would have nothing but problems with the Iodine Protocol and I have had nothing but success.

I have read as well that T3 is used by heart surgeons to stabilise the heart beat after heart surgery. If you have a heart problem there is a possibility that it may be due to lack of T3 rather than too much. (I shall try and send you the link.) Maybe you should get your T3 and RT3 measured? You will probably not get this on the NHS but Genova Diagnostics does it and may offer a discount for TPA members. And as for the TSH business, look on the www.stopthethyroidmadness.com and find out why it is really not so important. Also look at www.thyroid-rt3.com and find out about T3 and RT3 and how it can make you feel.

Your T4 looks very low even though it is in range. I have never been hospitalised or anything like that for my heart, but things were definately taking a bad turn before I took things into my own hands. I was on thyroxine but still having flutters. I was 42!! I had "normal" labs. I was converting my T4 to RT3 (confirmed by a test tken at my own initiative) and I think that it was putting my body under stress and this was causing the flutters.I think your doctor, like many, has given you incorrect explanations concerning your illness and treatment and you seem to be making a very commendable effort to understand a reasoning that is flawed. If you are at the point that you end up being hospitalised with heart problems you should really be directing that effort towards something or someone more forthcoming with coherent explanations!

Before you do anything, read the sites that I have mentioned above. It may be that they raise even more questions but in the long run you may find the solutions to some of your problems there. I believe that the woman who runs the T3 RT3 group, Val , had a lot of heart problems which are now mostly resolved. It might be a good idea to join the group and ask her about them. It may be that your heart problems are not linked to thyroid problems. But I have often found that things that I did not believe linked to my thyroid were in fact linked (carpal tunnel, burning feet and breast cysts for example!!). It can't do any harm to ask.

If you decide your doctor is giving you rubbish advice, just humour him or her so that you can get the labs you need for free and any medecine. My former doctor was a very nice guy who I had been with for fourteen years. But honestly he was killing me! I was very shocked by his ignorance about my condition because I had always been one of those people who always did what the doctor said to the letter. When I joined some forums I realised that it was the same everywhere. Scandalous really. Take the time to read and get informed. Don't let anyone tell you you are being selfish or willful about this or that you are messing around with things you don't understand. It's really worth it, particularly if you have a heart problem. It is possible to get better.

Hope this helps you and good luck.

MacGilchrist

From: daring_to_win <h5@...>thyroid treatment Sent: Sun, 8 May, 2011 13:57:09Subject: Do people recover from Hashi totally?

Hi allI was dx with hypothyroid and had hashi antibodies, in 2007. settled on 50mcg thyroxine to a mild hyperthyroid state tsh 0.1 (0.3-6.0) Drs were ok about but I wasnt. One of them dropped me back to 25 but I but before I could be retested I went into hospital in Feb with heart probs Put on beta blockers - didn't suit so on calcium channel blocker instead. Research led me to discover the heart issue could be the result of overmedication, so I went back and Dr admitted overmedication can cause it, saw where I was heading with this, and was going to stop my 25mcg on the spot leaving me taking nothing. I said I would prefer to try 12.5mcg and see what happened. Retested after 6 weeks. A different Dr in the practice read the results and declared they were "normal". I asked the receptionist (Id phoned as couldn't get there), for figures, and I had gone from 0.10 to 0.03 (doesn't that mean Im MORE hyper?) My Ft4 is 12.7

(10-25) Does anyone know whats happening? Ive currently dropped from the 87.5mcg thyroxine a week to 75mcg a week, and being unsure, felt I needed to ask about this. Yes, that IS weekly mcg not daily. Will dropping thyroxine dose be the right way to get TSH from 0.03 up to normal range of 0.3-6.0 or should I have raised it? Do people recover from Hashi? I thought it was lifelong thyroxine, so am confused. Any thoughts appreciated on what it means and what to do about it. thanksCarole

May 9, 2011

Hello Carole,you said that >>. a suppressed TSH in a medicated patient does NOT mean you arehyperthyroid<<Yes, this is correct... but the emphasis is on `medicated'. To get from a hypo to a hyper state your FT3 and FT4 would both have to exceed the upper ref range limit PLUS the TSH would have to be suppressed. A suppressed TSH alone does not signal hyperthyroidism. For instance, my own TSH is 0.03 and has been at that level for the past 2 years. My FT4 is pretty low inside the range and my FT3 is above the middle of the range.... I feel good J - not a whiff of hyper. It is the levels of the FT's that will tell you if you are taking too much or too little thyroid hormone and your wellbeing – not the TSH.

GP, said it does, but what does she know lol. She said I had an abnormalresult of low tsh with normal range Ft4, that means overmedication, so I washyper and thyroxine got lowered. She didn't mind where Ft4 was as long as inthe range. Thats why I said I was hyper.

Well, she was wrong. I would recommend for you to ask her for a referral to an endo of your own choice and you would need someone who specialises in thyroid conditions and not diabetes... they are few and far in between. If you email Sheila privately, she will send you a list of endos who have been recommended by some of our members. I already had Atrial Fibrillation diagnosed, but self managed it, and therecently developed heart prob is SVT, which provoked and took unbroken turnswith the AF, sending me to hospital where it was diagnosed. I really don'twant to remain on calcium blockers if SVT is result of med and will staysettled with thyroxine reduction, Id rather feel tired than have my heartplaying up,, but don't know how I can tell unless I stop the blockers. I doget it that most Drs don't know much re thyroids, that's why Im among expertslol..

Dunno about the `expert' bit <g>, but all of us are living with the disease, so have a little more insight than our GPs who have been taught badly about thyroid disease and most have not educated themselves any further and just parrot what the BTA and RCP are dictating about the diagnostic and treatment of Hypothyroidism.

In view of your AF and SVT I would even more suggest that you find yourself a good endocrinologist. I don't know if AF can be triggered by other factors (it probably can), but since you have a confirmed thyroid condition, I wonder if your AF could have been triggered by something called `Graves disease' – which usually would mean Hyperthyroidism, but some people have Graves autoantibodies as well as Hashimoto's autoantibodies and the two conditions – hyper and hypothyroidism – can occur simultaneously.

You said you have `hashi antibodies'.... have you got copies of the actual results? It would be useful to know which thyroid antibodies have actually been tested and how high they were. There are commonly two groups of thyroid antibodies that will diagnose Hashimotos – TPO and TgAB (thyroid peroxidase antibodies and thyroglobulin antibodies) .... either (or both) of those will be diagnostic for Hashi's, but there is another group of thyroid antibodies called TRAB or TSI (same thing) – this is a TSH receptor antibody and this group of antibodies is specific only to Graves disease, whilst you can have TPO or/and TgAB with either condition – Graves or Hashi's.

TRAB /TSI are antibodies which attach themselves to the TSH and this can result in erroneous readings. I am always suspicious of positive TSI when I hear about wildly fluctuating TSH figures for which there is no logical explanation. You have not told us how high your TSH and how low your FT4 (presumably that has been done?) had been back in 2007 when you had been diagnosed with Hashimoto's, but presumably the TSH had been above 5 at the time. It strikes me as strange that your TSH should have fallen below the ref range on the minute amount of thyroxine that you are taking.... this just does not add up – hence I am suspecting that you may have TSI autoantibodies and I assume that they have not been checked. Would you please ask your GP to not only order a FULL thyroid panel, including TSH, FT4 and FT3 this time, but also to check again the thyroid antibodies TPO, TgAB and TSI ... the TSI being the most important of the lot, because IMO you need to check for the possibility of Graves disease. Perhaps I am wrong, but in view of your heart conditions and the fact that your TSH is unreasonably low considering the minute amount of thyroid hormone you are taking, to my mind it is important to get this checked out.

How can I medicate by how I feel when thyroxine takes weeks for body to adjustto new doses so I cant know daily whats happening? plus I have CFS withsame/similar symptoms, The Dr tests both TSH and Ft4 but NOT FT3.

If your GP is unwilling to order a proper thyroid test and the antibodies, then you have no choice but to find yourself a good endo – but there is nothing stopping your GP from ordering those test, other than her not wanting to spend the precious NSH budget on expensive tests. But don't let them tell you that they are not allowed to do this or such nonsense. I get all of those test from my GP – no problem. To achieve an FT3 the doctor has to put a special request next to the parameter on the order form – something like "?query Hyperthyroidism?" will do the trick and the lab will oblige... and the same should be put next to the TPO, TgAB and TSI request.

My antibodies were higher than range at first, then rose a bit more but fell thethird time and are now lower again so they are in normal range. Something Ididn't think could happen, and that's why I asked if people recover (as in cure)from hashi. With normal antibodies AND reducing med dosage it seemed maybe Iwould!! (well I can hope).

Once a condition has turned autoimmune there is no turning back. The best you can achieve is remission and keeping the AA count low with optimal treatment and a gluten-free diet, but there is no cure. Autoantibodies can rise and fall all the time due to stress and other trigger factors – the actual amount of them does not have much relevance – you either have positives numbers or not, but this does not make the condition worse or better. When they are high, it means there is lots of activity (warfare against the thyroid tissues), when they are low, they've stopped their destruction for the time being. Those AA (autoantibody) attacks will happen until our thyroids are well and truly destroyed .... and this can take many years.

I know, all of this information is difficult to take in at the beginning, but don't worry, just read, read, read.... start with our files and work your way through this – meantime order Dr. Peatfield's book; it really is a `must read' and an absolute bargain .....

http://www.amazon.co.uk/Your-Thyroid-How-Keep-Healthy/dp/190514010X/ref=sr_1_1?ie=UTF8 & qid=1304937200 & sr=1-1

Best wishes,

May 9, 2011

> I already had Atrial Fibrillation diagnosed, but self managed it, and

> the

> recently developed heart prob is SVT, which provoked and took unbroken

> turns

> with the AF, sending me to hospital where it was diagnosed. I really

> don't

> want to remain on calcium blockers if SVT is result of med and will stay

> settled with thyroxine reduction, Id rather feel tired than have my

> heart

> playing up,,

>

> Hi, excuse me for butting in, but have you tried magnesium, which is natures

own calcium channel blocker? You can get a spray which is very effective and I

have treated my own AF using it. I take 2x1000 fish oil, vitamin C, magnesium

malate, coenzyme Q10 and a few other things, but I believe these are the

important ones for the heart. I no longer get any heart problems. I keep my

TSH around 2, which is more than most people but suits me fine. Also I forgot

to mention I sunbathe or take vit D3 to keep my vit D in the very top of the NHS

range and I think that is very significant. You must get a test to check the

vit D status, as overdosing is a health problem although very unlikely to

happen, and my GP did it for me. You can only overdose on pills, sunbathing is

safe as far as vit d is concerned. I am also on the paleo diet, which made a

big difference to my health even though it is a bore.

love janet

>

May 9, 2011

HI,

I just wanted to throw my tuppenny worth in. My mother, who is also hypo and on

thyroxine only, has had heart trouble since sept of last year - palpitations,

missing beats etc. After no joy with various test and some private research, I

suspected it could be as a result of under medication for her thyroid condition

and as a trial gave her some of my T3 I had spare (about 2 weeks worth).

As I suspected, 20 mcg of T3 daily in addition to her usual 100 mcg T4 helped a

lot with her problem and the episodes were greatly reduced. After lots of tests

on her heart by a heart specialist, all of which came back normal, SHE recently

asked her GP for her thyroxine to be increased. It was increased from 100mcg

to 150 mcg daily and low and behold she doesn't wake up in the middle of the

night with heart palpitations any more.

Regards

Nadia

May 9, 2011

Whenever there is any kind of heart malfunction, magnesium is the answer. For

those of us on the Iodine protocol, you can help your Hashi's by following the

supplements required for that protocol. Magnesium is a big part of that. I feel

magnesium is far to often overlooked and people need to supplement daily with at

least 400 mgs for optimal health. DRs don't know this information which makes

things worse....

The heart is a muscle. It follows the same rules as any other muscle, except the

results are more dramatic and life extinguishing. Calcium and magnesium control

the heartbeat. Calcium tenses the heart muscle; magnesium relaxes the heart

muscle. The heart's pumping motion is the alternating of this tensing and

relaxing action. With a correct balance of calcium and magnesium, the heart

beats in a consistent manner. With a deficiency of magnesium the heartbeat

becomes inconsistent. It beats too fast or too slow or it races. This is a sign

of magnesium deficiency. Handle the deficiency and the heartbeat returns to

normal. Nothing else needs to be done. Just take magnesium. You don t have to

know any more than that. Racing heart, take magnesium. Heartbeat not normal,

take magnesium.

http://www.mgwater.com/benes.shtml

Iodine site:

iodine/

Cheers,

JOT

May 9, 2011

Hi ,

Thankyou for reply and explanations, much appreciated. Ive ordered the book now

and meantime will go to the sites you said about. I tried iodine and felt very

much worse so never tried again.

Re the heart, I had wolff Parkinson White from 18, eventual open heart surgery

for it when 36, and ok till AF in 2004 and then this svt joined it. What was

happening is the AF would do a stint and with no break the SVT took over, and on

like that all the time. I didn't know what was happening so went to Dr who sent

me to hospital. Its controlled now so alls well.

I have a real problem telling or asking Drs for anything, I always feel more

ill as day approaches and my bp goes sky high Im sure lol. I used to be really

forthright and handled anything like that, but now.....well I fall to bits.

Perhaps when I have soaked in enough info I can use it to whack em with lol.

thanks again for everything

Carole

>

> You can recover from Hashis partially by getting rid of your anti-bodies.Â

Many

> people have achieved this by going on a gluten free diet or following the

Iodine

> Protocol.Â

>>>

May 9, 2011

Hello

thankyou for all the info. Ive ordered " the book! " off ebay though so if

anyone else wants the linked one its free ee. Thankyou for explaining about AA

for me and all the rest of the things you wrote. At the moment private tests

are out, and because you explained its the T4 level that shows if were hypo or

hyper, and as my T4 is lower end of normal range I need more med, I went back

on my 25mcg a day today. Heres the results I have. Tried to lay out sensibly

for you,

RESULTS

16/4/2007 tsh 89.6 (0.3-6.0) ft4 4.4 (10-25) on 25mcg for a week I think,

maybe 2, then 50mcg

21/5/2007 tsh 59.7 ft49.9

17/7/2007 tsh 0.9 ft4 16.5 tpa antibodies 74 (<60)

29/8/2008 tsh 0.1 ft4 21.7

19/9/2008 tsh 0.1 ft4 17.5 tpa 99

06/10/2008 dose change 50/25 alternate days

19/12/2008 tsh 1.97 ft4 15.7

31/3/2009 tsh 10.1 ft4 15.9 up dose to 50 per day

20/5/2009 tsh 2.16 ft415.9 endo happy off list!!

11/6/2010 tsh 0.10 ft4 14.2

dropped by Dr to 25mcg 8/12/2010 2010 cos I had symptoms

26/2/11 tsh 0.10 ft4 16.2 done while in hospital after SVT/AF episodes

9/3/2011 drop dose to 12.5mcg daily - my concern for heart prob

6/5/2011 tsh 0.03 ft4 12.7 told tpa in range

what do you make of them?

Carole

-- In thyroid treatment , " " <christina@...> wrote:

>

> Hello Carole,

>>>>>>>>>>>snipetty snips lots>>>>

> You said you have `hashi antibodies'.... have you got copies of

> the actual results? It would be useful to know which thyroid antibodies

> have actually been tested and how high they were.

>

more snips......

You have not told us how high your TSH and how low

> your FT4 (presumably that has been done?) had been back in 2007 when you

> had been diagnosed with Hashimoto's, but presumably the TSH had been

> above 5 at the time. It strikes me as strange that your TSH should have

> fallen below the ref range on the minute amount of thyroxine that you

> are taking.... this just does not add up – hence I am suspecting

> that you may have TSI autoantibodies and I assume that they have not

> been checked.

> http://www.amazon.co.uk/Your-Thyroid-How-Keep-Healthy/dp/190514010X/ref=\

> sr_1_1?ie=UTF8 & qid=1304937200 & sr=1-1

> <http://www.amazon.co.uk/Your-Thyroid-How-Keep-Healthy/dp/190514010X/ref\

> =sr_1_1?ie=UTF8 & qid=1304937200 & sr=1-1>

>

> Best wishes,

>

May 9, 2011

Dear Carole,

Don't beat yourself up over not feeling like taking on doctors. It's not easy when you feel ill. To tell you the truth I think I walked around in a zombie like state for years and just did what the doctor ordered. Many people in our situation do. The thing that jolted me out of it was when I realised that breast disease was linked to thyroid disease. My mum died of breast cancer at the age of 51 and was already ill at the same age as I am now. In fact I think she probably had adrenal and thyroid problems too that were undiagnosed and if she was alive now her illness would not take the same fatal turn. So I started on the Iodine Protocol. I was horrified that neither my doctor nor my specialist knew anything about it. I spent three months thinking it through because my brain with slowed down with brain fog. Anyway, Iodine Protocol or whatever, the important thing is to get on the

bandwagon and start getting informed and find out what is right for you. I think I made a mistake falling out with my doctor and getting in a state over it. It would probably have been better to have done my own thing and been a bit more cynical. I would advise avoiding all unnecessary conflict and not think about getting better in terms of having to convince your doctor you are right. I know it can make your blood boil. But you're not here to do missionary work among the medical profession. My doctor has eventually had to face the fact that what I do makes me better. I have to buy my own T3. My labs are "normal" and I am not in his office every month for low blood pressure like I was before. Neither do I keep scraping the car or driving into the kerb!! Since he does not supply my medicine he cannot kid himself that I am better because of him. I tell him what I do so that my treatment does not

clash with another treatment he might give me but I don't ask his advice or talk about it.

One of the biggest hurdles that I had to get over to get better was taking responsibility for things and realising that my doctor was useless. It was very intimidating at first, but you get used to it. It's done wonders for my nerves and self confidence.

MacGilchrist

P.S. That said about not getting annoyed with doctors, my old doctor laughed at me and told me it was impossible to get rid of my Hashi anti-bodies. I know that this is not true and it looks more and more like they are coming down below alert level. If I do get there, I have a fantasy about making a load of copies of my lab results and pasting them all over the windows of his car and surgery during the night so he can't ignore them.

May 9, 2011

Hello Carole,

RESULTS16/4/2007 tsh 89.6 (0.3-6.0) ft4 4.4 (10-25) on 25mcg for a week or two, then 50mcg21/5/2007 tsh 59.7 ft4 9.917/7/2007 tsh 0.9 ft4 16.5 tpo antibodies 74 (<60)29/8/2008 tsh 0.1 ft4 21.719/9/2008 tsh 0.1 ft4 17.5 tpo 9906/10/2008 dose change 50/25 alternate days

19/12/2008 tsh 1.97 ft4 15.731/3/2009 tsh 10.1 ft4 15.9 up dose to 50 per day20/5/2009 tsh 2.16 ft4 15.9 endo happy off list!!11/6/2010 tsh 0.10 ft4 14.2dropped by Dr to 25mcg 8/12/2010 2010 cos I had symptoms26/2/11 tsh 0.10 ft4 16.2 done in hospital after SVT/AF episodes9/3/2011 drop dose to 12.5mcg daily - my concern for heart prob6/5/2011 tsh 0.03 ft4 12.7 told tpo in range

Great that you have kept a record J - well done you !

My impression looking at the above pattern is that the "behaviour" of the TSH is odd and not in line with the medication you were taking. For instance ... a TSH drop from 59.7 to 0.9 on a dosage of 50 mcg Levothyroxine within 2 months is – although not impossible – not what I would expect to see. Likewise, a rise of TSH from 1.97 to 10.1 within 3 months when dropping the dose and taking 50 / 25 mcg on alternating days also seems a little unrealistic, particularly since the FT4 on that occasion stayed the same. But what is even more unrealistic is that whilst you up the dose back to 50 /day, the TSH actually rises (!) whilst the FT4 still stays the same....and the endo seems happy with that L - my advice – bin the endo!

Something you have not yet told us mush about is how you actually feel. From what you are saying and looking at your FT4 I would guess you are hypo and need more thyroid hormone. Whether T4 alone (Levothyroxine) is enough to make you well, I don't know, but I have my doubts.... you might be better off on either a combination of T4 and T3 or on natural desiccated thyroid like Armour or Erfa. We know you have a heart condition, and looking at lab results is one thing – but knowing how a patient feels is equally important (although most doctors seem to have forgotten that). Do you actually feel hypo or hyper ? What are your symptoms?

I could be wrong, but looking at the above chart and the fluctuating TSH figures I strongly suspect that you may have TSI autoantibodies and those AAs may have hijacked the TSH and gone off to fairyland with it. It's a pity the FT3's were never done, that would tell a lot more, but just looking at your FT4's throughout the chart – they appear to be in keeping with the amount of Levo you have been taking....(too little, basically).

You really need to get all your thyroid antibodies checked – TPO, TgAB and TSI.... I hope you can get your GP to order them.... and of course a full thyroid test as well – including FT3. I hope you will manage to get that done. – and please remember not to take your thyroid medication on the day of the blood draw until AFTER the blood draw, else the figures would be unrealistically high.

With best wishes,

May 9, 2011

Hi Janet

I had the AF controlled brilliantly, used q10, mag didnt do it for me (citrate

included), but because I got sick of feeling unwell all the time decided to stop

ALL supplements in case it was one of them, and couple of weeks later the heart

stuff. Its all back in hand now.

Carole

>>>>>>>>>>>> >

> > Hi, excuse me for butting in, but have you tried magnesium, which is natures

own calcium channel blocker? You can get a spray which is very effective and I

have treated my own AF using it.

May 9, 2011

Hi Nadia

Im as certain as I can be that my heart probs not due to undermedication. This

stuff started after Dr said I was overmedicated. Yes I know they dont know

everything, but seems to me this is right for me. Plus I have heart history so

expected something to crop up again sometime. Thanks for input tho.

CArole

>

> HI,

>

> I just wanted to throw my tuppenny worth in. My mother, who is also hypo and

on thyroxine only, has had heart trouble since sept of last year - palpitations,

missing beats etc. After no joy with various test and some private research, I

suspected it could be as a result of under medication for her thyroid condition

and as a trial gave her some of my T3 I had spare (about 2 weeks worth).

>

> As I suspected, 20 mcg of T3 daily in addition to her usual 100 mcg T4 helped

a lot with her problem and the episodes were greatly reduced. After lots of

tests on her heart by a heart specialist, all of which came back normal, SHE

recently asked her GP for her thyroxine to be increased. It was increased from

100mcg to 150 mcg daily and low and behold she doesn't wake up in the middle of

the night with heart palpitations any more.

>

> Regards

> Nadia

>

May 9, 2011

Hi

Ive ordered " the book, " and will look more into the iodine protocol as well. so

start has been made learning wise.

I havent fallen out with my Dr, she just looks like she dreads seeing me!

doesn't do anything anyway, when I told her I had a high heartrate she didn't

even take my pulse. I do " do my own thing " too, which is why Im not on

warfarin, (taking lycopene and folic) and not on heart meds from 2004. q10 dealt

with it and didn't need them. Ive not tried armour for thyroid because its

just too expensive, and I can only take whatever LevoT dose Dr prescribes they

wont let me get more than is needed, so other than reducing dose I cant change

that either.

T3 I thought about but being on so small a dose of thyroxine don't think its

realistic. I think perhaps if I say I treat myself the Dr may boot me off, my

cardiologist did when I said Id take q10 instead of his drugs. Told me to go

back when I couldn't manage it.

Anyway, its good to know success is there to be found and I shall persevere. Oh

and please please take a pic when, repeat when, you stick your results on drs

car window. Id soooo love to see that.

Carole

>

> Dear Carole,

> Don't beat yourself up over not feeling like taking on doctors.Â It's not

easy

> when you feel ill.Â To tell you the truth I thinkÂ I walked around in a

zombie

> like state for years and just did what the doctor ordered.>

[Ed]

May 9, 2011

Hi ,

even I can see the patterns inconsistent, but Drs only look at the latest test,

so I think I will have to try and get there to raise it as a whole picture. I

don't have an endo, he only saw me twice and was pleased with results 0.10tsh

etc so closed case.

How do I feel? Mmmm. I HATE that q!!! I cannot tell you. I have CFS/M.E plus

had 2 tenderpoints short for diagnosis of FMS. 2 heart conditions, and several

other bits and bobs as well. I honestly cannot pull symptoms out for any of

them, theyre all similar and I just cannot tell, apart from heart! When Im tsh

0.1 I don't sleep good, Im awake several times a night, cant remember what level

I DID sleep at though. I think (from looking up), the symptoms I class under

hyper include SOB, red palms, irritable, pain across back of shoulders,

diarrhea, itching, diarrhea and my thumbnails look same as google pics for

plummers nails. I hadnt heard of them so looked when I read its hyper symptom!

I also now have eczema which my carer told me was thyroid linked for her mother.

Had it for last few weeks, which could be coincidence but fits timing with tsh

going from 0.1 to 0.03

Im hoping if I go to Dr with historical list of tests she will clearly see the

fluctuations and then agree to investigate further. Maybe then I can present

possible scenarios and be brave enough to suggest what to ask for and why. (says

I hoping).

I think I muddle up a couple of replies, not sure, but hope nobody minded if I

did lol

Carole

>

> Hello Carole,

>>>>>lotsa snippies>>>>

> You really need to get all your thyroid antibodies checked – TPO,

> TgAB and TSI.... I hope you can get your GP to order them.... and of

> course a full thyroid test as well – including FT3. I hope you will

> manage to get that done. – and please remember not to take your

> thyroid medication on the day of the blood draw until AFTER the blood

> draw, else the figures would be unrealistically high.

>

> With best wishes,

>

May 10, 2011

Hello Carole,

....even I can see the patterns inconsistent, but Drs only look at the latest test,so I think I will have to try and get there to raise it as a whole picture. Idon't have an endo, he only saw me twice and was pleased with results 0.10tshetc so closed case.

Yep – that's the story of our lives.... doctor's looking at the latest blood test, not looking at the patient and disregarding symptoms.... L

I would suggest you make an (excel) table and print it out – all nicely logged, so that the GP can see all the inconsistencies at a glance. They like lab figures, don't they? – so spoon-feed them to her <g>.

In order to get your GP to order the antibody test for all of the thyroid antibodies, you may have to try and explain why you think they are necessary. The following website is the easiest to understand that I could find, but even so, it is a very complex and complicated subject ....

http://www.suite101.com/lesson.cfm/19330/2899/4

You could just print out the article and give it to your GP, but most doctors resent being 'educated' by their patients. So it would probably be better to keep it very simple and say that because of the inconsistency with your TSH figures, - which do not correspond with the amount of thyroid medication you are/were taking - you would like to know if TSI autoantibodies might be responsible for those fluctuations, as they bind themselves to the TSH and cause erroneous results. But you also need the other AAs checked to see where you stand with those – in particular TgAB, because those have not been tested so far. You already know you have TPO, so this is of less importance to re-check, but why not do the whole lot whilst they are at it ....

How do I feel? Mmmm. I HATE that q!!! I cannot tell you. I have CFS/M.E plushad 2 tenderpoints short for diagnosis of FMS. 2 heart conditions, and severalother bits and bobs as well. I honestly cannot pull symptoms out for any ofthem, theyre all similar and I just cannot tell, apart from heart! When Im tsh0.1 I don't sleep good, Im awake several times a night, cant remember what levelI DID sleep at though. I think (from looking up), the symptoms I class underhyper include SOB, red palms, irritable, pain across back of shoulders,diarrhea, itching, diarrhea and my thumbnails look same as google pics forplummers nails. I hadnt heard of them so looked when I read its hyper symptom! I also now have eczema which my carer told me was thyroid linked for her mother.Had it for last few weeks, which could be coincidence but fits timing with tshgoing from 0.1 to 0.03

Hmmm, all of the above could be hypo – insomnia, diarrhea, itching, eczema and nail deformities go with either, hypo or hyper..... red palms could signify any thyroid disease or low adrenal function or toxicity (and a whole range of other things) - the only thing that stands out to me for `hyper' would be shortness of breath, but this could equally be related to your heart condition. – Overall I get the impression that you sound pretty hypo, which `goes' with your low FT4 levels.

You actually `sound' to me like you might have low adrenal function. Please look into our files and read everything on adrenal function – do the test and see how you fare... Low adrenal function is not something any NHS doctor will recognize or even be prepared to discuss with us, so if you have that, you are on your own and have to help yourself (what's new? L). If your questionnaire result suggests that you adrenals are very weak, you could do a Genova salivary test, or (if money were tight) you could just start supporting your adrenals with NAX , vitamins and minerals.... you probably need it. Adrenal support of often needed for a long time – many month to many years (I am in my 4th year now and still can't do without).

I don't know your age, but if by any chance you were going through the menopause, then your

patchy sleep pattern might be due to that and Serenity cream could be the answer... Going by personal experience, I would only recommend this particular cream, not any other brand nor the Serenity cream from `Wellsprings', but this is my personal view.

http://www.progesterone.org.uk/index.php?main_page=product_info & cPath=65 & products_id=180

When I first took it, I though it did nothing – could not feel any better or worse, but you have to stop after 24 days, and this was when I noticed the difference big time. Now on months 4 I feel that my system is back to `normal' – good sleep and no hot flushes – Anyway, go to the website and read all the information on there and see if this might apply to you.

Ive not tried armour for thyroid because itsjust too expensive, and I can only take whatever LevoT dose Dr prescribes theywont let me get more than is needed, so other than reducing dose I cant changethat either.

Well.... you know the old saying `where there is a will....' J There are much cheaper alternatives. Armour or Erfa from the US or Canada would cost you about £100 for 500 one-grain pills.... The cheaper generic alternative from Thailand would cost you about £ 100 for 1000 of the one-grain pills.... and 1000 pills would last you roughly a year if you needed 3 grains/day – and you might need less than that, it just depends.... I am taking Thiroyd from Thailand and for me they work brilliantly. Other members take Thyroid-S and they are happy with those.

But first of all – in my view – you should try to convince your GP to test your AA's, do another TFT and if at all possible, it would be nice to get some other parameters checked, namely –

Ferritin, Folate, Zinc, Copper, Magnesium, Vit B12 and Vit D3 .... do you think you could talk your GP into ordering that? Thing is... if you were low in any of the above (even if low within the ref range), your thyroid hormone would not be taken up into the cells properly and you stay hypo as a result... not that we expect our doctors to know this, though.

With best wishes,

May 10, 2011

Thanks

Im 56, post meno. I will make a table for Dr with historical test figures on

and follow your suggestion for requesting the antibodies test and borrow your

lovely way of asking, short and sweet and bound to go down better than my

blustering!. Will also look at adrenal and later consider the armour etc ideas

and names for me to look into. Appreciate it.

Carole

May 10, 2011

Well done Nadia. Is your Mum still taking T3 or is she just on

150mcgs thyroxine? If she gets these heart beats again - or palpitations, tell

her to try 500mgs magnesium - and that should help.

Luv - Sheila