My mother can't tolerate any thyroid med unles... - Thyroid UK

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My mother can't tolerate any thyroid med unless nutri-meds. Her TSH is very high, we don't know what t do!

fabianarm profile image
14 Replies

My mother is trying to take thyroid meds and the only one that she can take is Nutri-Meds Porcine thyroid, but it has low hormone in it and her TSH is very high right now. Every time that she takes a synthetic hormone (T4 and T3 or just T4) she just gets crazy, all hyper symptoms, no matter which quantity that she takes. She she took i grain of Thyroid-S, after like a week her blood pressure started to get high. We don't know what to do or what's going on...

Any opinion about that?

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fabianarm
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14 Replies
nobodysdriving profile image
nobodysdriving

has she tried something non allergenic like Westhroid P? wpthyroid.com/

if not I'd consider it.

can she take 'other' medications with no problems? (trying to find out if it's the fillers or the actual thyroid hormones doing this to her.....)

fabianarm profile image
fabianarm in reply tonobodysdriving

She's very sensitive to all kinds of medication, just a few she has allergic reaction (penicilin). Even homeopathy she can't tolerate sometimes.

She took all kinds brands of synthetic T4, and all of them makes her feel hyper and "crazy". The Thyroid-S doesn't makes her feel that way, but after a few day she started to has hyper symptoms (but not the "crazyness").

The problem is that we live in Brazil (I'm brazilian), and to get other NDT we need a prescription... the only NDT that I found that it's possible to buy without a prescription is Thyroid-S. I don't know if t's possible to get it with a prescription from a brazilian doctor.

shaws profile image
shawsAdministrator in reply tofabianarm

Naturethroid and WPure are both hypoallergenic.

rlclabs.com/about.php

There has never been an inconsistency in T4/T3 and have been in use for 75 years.

nature-throid.com/

Kitten-whiskers profile image
Kitten-whiskers

Hello Fabianarm,

I am in the same situation - even tiny amounts of thyroid medication causes endless problems/hyper symptoms - so I completely understand. What I would suggest is having the ASI test done - through Geneva logisitics to see if her adrenal function & DHEA is low, then if she has tummy problems, leaky gut, food intolerances and/or Candida that also needs to be addressed - gut health is very important - this can also effect the uptake of the medication, thirdly look at supplements and vitamins - so important when you have been poorly a long time, thyroid issues can deplete certain things. As with Thyroid medication I have found a bit more relieve from a natural one but can't take much - since working on the other issues my health has improved greatly.

Best wishes

fabianarm profile image
fabianarm in reply toKitten-whiskers

Hi Kitten-whiskers! (nice nickname, by the way)

It'a a relive to know that someone is like her! The doctors look at her reactions like she's a alien! Nobody understands why she's having these reactions. The ASI test is the saliva test? The biggest problem is that we live in Brazil (i'm brazilian) and the doctors here know nothing about NDT! Some doctors, like her doctor, know about leaky gut and diets and this kind of treatments, but they use the synthetic T4 and T3 anyway. Her doctor agreed she takes NDT (the other looked at us like we are crazy).

One of her doctors prescribed to her 7-Keto (DHEA metabolite) because her DHEA was very low (this happened in august last year), she's taking it every day. But her cortisol was high according to a doctor and ok according to another, but it was evaluated by blood test, not saliva.

I'm sure that she has tummy problems (always had), she's taking probiotic but I don't know if they're working because she doesn't changed her diet. She tried the gluten-free diet for a month last year but she had stomach issues at that time (gerd) and lost so much weight that she became scared of the diet and started to eat gluten again. At the time that she was gluten-free her antibodies dropped a lot. She'll go to a nutritionist to help her with the diet. Probably she has Candida too...

She's taking some vitamins that the doctor prescribed, but I don't know if they are the right ones!

How much do you take and which brand? She took 1/8 grain of Thyroid-S today, I'm thinking in trying Thyro-Gold (similar to nutri-meds but stronger). Are you able to manage your TSH with a low dose?

She'll try to take homeopathic meds to. Did you take it?

Thanks a lot for your answer, it's really good to know that she's not the only one...

Kitten-whiskers profile image
Kitten-whiskers in reply tofabianarm

Hello Fabianarm,

Your very welcome, ask as many questions as you like - I am always happy to help. It has been a living hell for me until recently, I am doing alot better now, still not well but getting their. I would prosume that the Adrenal Test was the Synachin test - this is done by blood - they take some blood then inject you with something to get your adrenals to react and call you back in about half hour and take another lot of blood - if this is the case it has been proven that this useless test only shows up if you have addisons diease or cushing diease (nothing inbetween) I had this done (and you guessed it "I was in the range) I had the ASI test done privately which proved other wise, I was disperately in need of Hydrocortisone (something I was denied by the docs) I can private message you on great places you can get natural thyroid from (at reasonable prices) - as I have to buy mine as the doctors won't prescibe me any either.

Candida is particularly nasty and very hard to get rid of, but if that is still present it does effect the stomach, adrenals & Thyroid. I can recommend some books that I have found very helpful.

It may not be gluten causing the problem - it really can be anything but if she follows an exclusion diet of say all the biggest culprits - ie dairy, Wheat, Gluten, soya - and after 30 days introduce them one at a time and see what causes problems, that way she will no what to avoid in the future, bearing in mind that if she has fibromyalgia that can cause inflammation in the stomach. Does your mother have low stomach acid? ( common in people with an underactive Thyroid) if you go on the stopthethyroidmadness website - you will see how to do a basic test with bicarbonate of soda. I do take a lot of suppliements but they have made a hugh difference to me - I have never gone for the expensive ones, mid price range and they have been fantastic.

Does you mum take any vitamins? I changed over to westyroid pure about 3 weeks ago - although this also causes havoc if I have to much it has been far more benefical, all I take is quarter of a 1/4 grain tablet once every four to five days but as it is a mixture of T3 & T4 it works better - the T3 works quicky and the T4 stays in the body for a while - so it means I can go longer without having any. Sorry for long reply - just wanted to give you the info that has helped.

Personally I would say not to waste your money with a nutrionist - they were never helpful to me, the money can be better spent. I am all in favour of herbal remedies etc - they have really helped me but medication - a big no no (horrible stuff) for me

Best wishes

eeng profile image
eeng

I have read on this forum that some people find they have to start on natural thyroid products very slowly - a quarter of a grain for a week or two, then half for another week or two and so on. I hope your mother finds something she can tolerate soon.

fabianarm profile image
fabianarm in reply toeeng

Thanks, eeng! She started to take 1/8 of grain today! I hope that raise it veeeeery slowly works. It's good to know that other people had this problem too.

lisabax profile image
lisabax

It sounds as though she needs a holistic doctor who understands this very complex disorder. There are a number of natural thyroid hormone replacements available but as kitten-whiskers has said there are lots of other factors that can affect thyroid hormone uptake. If your mother can afford to see a private doctor, Thyroid UK has a list of supportive practitioners which you can get from Louise Warvill

fabianarm profile image
fabianarm in reply tolisabax

Hi Lisabax! The problem is that I live in Brazil! :(

It's very hard to find a holistic doctor here. We already went to 9 doctors. The one that she's now is very attentive and good, but he doesn't know much about NDT, I presented it to him, and he's not understanding what is going on with her, why she can't tolerate. I bought a lot of books about it, I'm reading but it's very hard to not had a doctor who knows this kind of treatment...

Clutter profile image
Clutter

Fabian,

Can you tell us what your mother's TSH, FT4 and FT3 are, with the lab ref ranges as they vary across countries and continents.

Some people are very sensitive to thyroid hormone and if synthetic doesn't suit natural dessicated thyroid replacement can be beneficial. 1 grain Thyroid-S was too much to start on, half a grain is usually recommended. Your mother may do better starting on a quarter grain and if that is problematic could try a quarter grain on alternate days until tolerance is established.

If your mother has adrenal issues this can make tolerating thyroid replacement difficult and it may not be possible until her adrenal issues are addressed. Type adrenals or adrenal fatigue into the HU search box and check these links thyroiduk.org.uk/tuk/search...!

suzannai profile image
suzannai

Does your mother have an autoimmune conditions such as hashimotos or graves disease? There is also some research by Mark Starr and other environmental doctors on the fact that some patients are actually allergic to their own thyroid hormones. Environmental doctors here in the US can look into this but perhaps it is worth looking in to. Other things to consider are iron, if it is low she may experience pooling of the hormones aswell as vitamin D, in which case it will not get into the cell. Lastly she should have her cortisol levels checked. patients with low cortisol tend to sometimes have hyper reactions to thyroid hormone because it is not getting into the target cells. Stop the thyroid madness is a great site for this information.

cc120 profile image
cc120 in reply tosuzannai

As suzannai says, iron and vit d, also ferritin, b12, folate, vit c should be checked, if not reasonable level, body cannot utilise thyroxine. Do you require any sources for natural desicated thyroxine?

And as clutter says on thread: healthunlocked.com/thyroidu...

Clutter Administrator - It may be an idea to request ferritin, vitamin D, B12 and folate tests too. Low ferritin and vitamin D can inhibit T4 to T3 conversion and all can cause symptoms similar to hypo symptoms too. Ferritin is ideally 70-90 in range and the others high in range. Make sure to get a printout with lab ref ranges as GPs are inclined to call anything in range normal.

helvella profile image
helvellaAdministrator

It looks to me as if we need to start at the beginning.

What is wrong with your mother?

Why is she trying to take thyroid hormones?

What blood tests has she had? Please post both actual numeric results and reference ranges.

Let me explain why I think we have to go back. High TSH needs to be corroborated by low FT4/FT3 results to stand as an indicator of hypothyroidism. You can have a high TSH even with "normal" or high thyroid hormone levels. A cause is a small growth within the pituitary which makes it put out too much TSH. If TSH is the only test done, and you try to take thyroid hormone, you will very likely increase the thyroid hormone levels from what may be tolerable to intolerably high.

So, to some extent, that possibility fits with your description. And suggests that Nutri-Meds product might only be acceptable for precisely the reason you say - it has low hormone levels in it.

Rod

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