Feeling rubbish! Can't tolerate meds. Latest R... - Thyroid UK

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Feeling rubbish! Can't tolerate meds. Latest Results - Any Ideas?

potatohead profile image
potatohead
โ€ข18 Replies

Hi everyone, could you please have a look at my latest blood tests and let me know your thoughts please?

I was diagnosed Hypothyroid a few years ago but have been unable to tolerate Armour NDT and/or T3. Private Dr has suggested trying to restart on a low dose, now that gut issues are being addressed and vitamins are good, as I suffer with malabsorbtion issues and upper fermenting gut (and severe ME/Fibromyalgia and have vitamin b12 and magnesium injections ๐Ÿ™„).

Any ideas what's going on? I was previously told I had a conversion problem but T3 only made me feel awful too! Even when raising and sticking with it.

Any advice and support would be great! Thanks so much ๐Ÿ˜€

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waveylines profile image
waveylines

Hi youve had a rough run! Lol...

It could well be that because of your malabsorption issues meant your vitamin levels etc were out and you were unable to make best use of the Armour causing it to back stack giving you palpitations. Now you have addressed the malabsorption you could restart and they may not reoccur.

Personally I have found the fillers in some meds caused me simular problems. Armour didnt suit me once it was reformulated and a simular thing happened with Erfa. I moved across to WP which is hypoallegenic and hey presto problem solved and not only have those symptoms disappeared but my uptake was better so I could actually lower my dose. . So I think its also about finding the right composition of thyroid treatment for you -including the fillers used in the tablets.

Interesting my thyroid test results were simular to yours prior to treatment. I was also diagnosed with CFS/ME and had terrible gut problems. Its taken a long time but once I found the correct thyroid treatment for me those problems disappeared. I no longer have CFS or gut issues. Found a low carb diet suited me best. The only supplements I take these days are vit D3 & calcium.....

Hope this helps.....

potatohead profile image
potatoheadโ€ข in reply towaveylines

Hi waveylines

Thanks so much for your reply. I need a bit of hope at the mo! Am mostly bedbound so it's so nice to hear your experiences and that you improved ๐Ÿ˜ฌ. I also have probs with fillers and am Lactose intolerant so maybe the WP brand may help... I have to self treat so could you please PM me for supplier?

I ordered some Thiroyd from Thailand as that appeared to help peeps in same situation, but am scared to start it tbh as I feel so rough and don't want to be worse! Catch 22.

Dr Myhill suggested start v low and see how I feel... I'm on Ketogenic Paleo diet too, which defo helps! but is v restrictive.

I hv very foggy head so please excuse anything I've missed! Thanks again!

Souldoc profile image
Souldoc

Have you been tested for SIBO?

potatohead profile image
potatoheadโ€ข in reply toSouldoc

What's SIBO?! thanks for replying.

startagaingirl profile image
startagaingirlโ€ข in reply topotatohead

Small intestine bacterial overgrowth

potatohead profile image
potatoheadโ€ข in reply tostartagaingirl

Oh thanks. Is this tested via a Stool Analysis? If it is it came back clear apart from low acidity in the stomach and upper gut fermentation.

startagaingirl profile image
startagaingirlโ€ข in reply topotatohead

The upper gut is the small intestine and no, food should not ferment in it and so it needs to be sorted so everything works properly. Sorry I don't know how to address it. I would suggest a new post with a title of this and then people who can help may see it. xx

potatohead profile image
potatoheadโ€ข in reply tostartagaingirl

Dr advised taking enzymes, Betaine and acidophilus during meals, which has greatly helped, plus a Keto Paleo diet. Also gluten, lactose and sugar free.

Gut health is much improved since doing this which is why she suggested restarting thyroid meds.

Thanks for your input.

crps profile image
crps

Did you try levothyroxin

potatohead profile image
potatoheadโ€ข in reply tocrps

No, because of conversion probs. The T4 just keeps pooling even from NDT and makes me feel worse. Saw Dr Skinner and Dr Peatfield but have not been successfully treated yet. Thanks for your reply.

janeb15 profile image
janeb15

Hello, I'm sorry to hear of your problems, and understand how frustrating your situation is. I don't know who your private doctor is but would he/she be open to testing you for chronic viruses, Mycotoxins, Lyme, Candida, MCAS, heavy metal toxicity, methylation and nagalase levels? We took my daughter to private thyroid specialists for years, but it wasn't until we visited a specialist in the USA that she was tested for all of the above and discovered that she multiple complex chronic infections that were causing her low thyroid function, and she is now recovering. Juggling with thyroid and other endocrine meds, vitamin/mineral supplements was not the answer for her. Some of these tests are available privately in the UK, but NHS tests for Lyme and heavy metals for example are largely useless. Contact me by PM if you need more information. Jane x

potatohead profile image
potatoheadโ€ข in reply tojaneb15

Hi there, thanks so much for your in-depth reply! Much appreciated ๐Ÿ˜€. So pleased you managed to successfully find help... It's such a hard battle isn't it?

I tested positive for Rickettsia and Anaplasma and was treated for 4 years by Dr J from S Africa.

No to Candida. Stool samples were clear apart from gut fermentation and dietary issues.

Don't know about the other tests you mentioned. Can I get them tested here? I'll PM you, thanks!

What about adrenal glands? If they're under par any kind of thyroid will make things worse. If your doctor will test you(salivary cortisol or STIM test) that might reveal something amiss. I went the direct route, adding LOW dose over the counter hydrocortisone ointment in tiny doses several times per day. Seems to help, as I can even take small doses of thyroid right up until I go to bed. I also have gut issues and have eliminated gluten and dairy(hard!), but keeping eggs, for now. I eat fish, chicken, salads, fruit, olive oil, beans, rice & corn. I even tolerate wine & beer much better, LOL, though I don't drink all that much.

Even a knowledgeable doctor knows they don't know everything and much depends on feedback & experimentation on the part of their patient. Do, however, look into the adrenal connection. Also, I've found that supplementing with vitamin A(retinyl palmitate, since I'm allergic to cod liver oil)seems to have helped with food tolerance and reduction of respiratory infections. Wishing you the best. Keep working on it. It's your life.

potatohead profile image
potatoheadโ€ข in reply to

Hi there, thx for so much for your feedback. I've had adrenals checked and was classed as 'resistance stage 3 - maladaptation '. I've been supplementing with Standard Process' Drenatrophin PMG and Drenamin PMG which I have found to be very beneficial in calming down my overactive adrenalin! I tried NAX and others but they were too strong for me. I'm thinking I may be ready to restart thyroid meds now but am a bit scared of the consequences due to bad reactions and major setbacks in the past!

I too have the cortisone ointment but wasn't too sure how to dose it. How much did you start with and how often did you increase it? Did you do this before starting thyroid meds? Sorry, I learn things then I forget!!

Will look into Vit A, sounds interesting! How much do you supplement?

So pleased to hear you have gradually improved! Gives me hope ๐Ÿ˜€.

I am so thankful for the help and support from this forum, it is literally a lifesaver! Even when I'm too unwell to post I'm constantly reading other people's experiences... and the replies they receive are much appreciated, even though I'm only browsing. Thank you and good health to all! Xxx

โ€ข in reply topotatohead

Regarding hydrocortisone ointment, my dosing is unscientific and imprecise but I'll try to convey how I use it.

Upon awakening I squeeze out a bit that covers the tip of my first finger. Not thick, but something like a half moon shape and rub it into my forearm or wrist or top of foot. About 11 a.m., I use about half the amount of early morning dose. Around 3 or 4, half of the late morning dose. If my allergies are flaring or I feel like I'm getting a cold, I'll use tiny doses every hour or two. A few weeks ago I knocked out a cold in 3 hours by doing that. Even amazed me! I do take it along with my thyroid medication.

As for vitamin A, I also rub that into the skin. The skin is loaded with various receptors and with gut issues, topical application of vitamins can be effective. I use 15,000 to 30,000 IU of retinyl palmitate because, as I wrote, I'm allergic to cod liver oil.

Some links for you to read:

raypeatforum.com(a forum about the work of Ray Peat, PhD, an endocrine physiologist)

hormonerestoration.org (a site of an interventional endocrinologist)

I know it's difficult not to get discouraged. I'm nowhere near where I want to be and regaining my health is like trying to walk on an icy sidewalk. But trying is what we have to do. It's the only way I know how to be. Giving up is not an option. I recall the motto of the British Special Air Service; "He who dares, wins." Stay in touch.

potatohead profile image
potatoheadโ€ข in reply to

That's very informative! Thank you.

I prefer the idea of rubbing things into the skin so it doesn't impact absorption issues, such a good idea. Will look into the Vit A Palmitate. Learning something new all the time!

Take care and sending health thoughts ๐Ÿ˜€

Natalia_N profile image
Natalia_N

All your thyroid tests are normal. I don't know if take any thyroid meds. However your B12 is high. To much B group vitamins in a blood is not good. You may want to check your liver enzymes and specially ferritin. Ferritin Serum - how much iron is being stored in the liver. High B12 will also causes ferritin to be high. To much iron in a blood is not good. That might be the answer to your question.

potatohead profile image
potatoheadโ€ข in reply toNatalia_N

Thanks for replying. My B12 levels appear high but not at a cellular level due to malabsorbtion issues. Therefore I need very high amounts to actually feel any benefit. I also supplement Strong Vit B compound and Foliate to complement this, which greatly helps me. Plus magnesium injections. Without any of these I am unable to function at all.

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