Is this all thyroid linked?: I have... - Thyroid UK

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Is this all thyroid linked?

Maggiet profile image
14 Replies

I have hypothyroidism treated by Levo. TSH is less than 0.1, FT4 is 18. Also have fibromyalgia, depression, small fibre neuropathy and I'm in endless pain. Have blisters on my head with unbelievable itching. Dermatologist suspected skin condition connected to coeliac disease but biopsy showed inflammation of the scalp with no treatment or further investigation planned. Also having terrible hip joint pain. In the last 12 months I've had laryngitis twice, urticaria, chronic vaginal thrush, facial shingles twice and sinusitis - that's on top of my chronic conditions. I'm currently trialling a GF diet at the instigation of the pain clinic. Sorry to go on, but I'm desperate for some relief from all of this. Thank you for reading.

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Maggiet profile image
Maggiet
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shaws profile image
shawsAdministrator

I wonder if you have a sensitivity to levothyroxine? It's obvious that once on levo we cannot stop unless we have an alternative but Dr Lowe suggested this and I wonder if it would help you.:-

Dr. Lowe: Your wife may be having an allergic reaction to some constituent of the thyroxine tablets she is taking. It is extremely unlikely that thyroxine molecules themselves are causing the reaction. Thyroxine is what we call an "orthomolecular" substance. This means that thyroxine is natural to the human body and necessary for health. Allergic reactions to orthomolecular substances are incompatible with health and extremely rare.

Your wife can test whether she's having an allergic reaction by taking an antihistamine, such as 50 mg of diphenhydramine HCL. She should take the antihistamine an hour or so before taking her next dose of thyroxine. If after taking the antihistamine, the thyroxine preparation doesn't cause the reaction, it’s safe to conclude that she’s having an allergic reaction to some constituent other than thyroxine in the tablets. In this case, her doctor should switch her to another brand of thyroid hormone.

***

After I was given levothyroxine, I had pain which I had never experienced before, so much so that I could barely move and was so stiff as well as severe palpitations. Once I changed to T3 alone there was no looking back.

This is a link which may be helpful to you:-

web.archive.org/web/2010103...

There is also a hypo-allergenic natural dessicated thyroid hormone but would usually have to go private as GP's wont prescribe.

Maggiet profile image
Maggiet in reply to shaws

Thank you so much for all this. The only specialist I haven't seen is an endo! Strangely enough I am side effect sensitive to all drugs and all the docs want is to keep giving me more!

shaws profile image
shawsAdministrator

Hypothyroidism and depression can go hand in hand.

healthunlocked.com/thyroidu...

Maggiet profile image
Maggiet in reply to shaws

Yes I think that is so true as I started with the depression and hypo at the same time

Hennerton profile image
Hennerton in reply to Maggiet

It occurs to me that you may not be converting inactive Levo to active T3. The only way to know is to have a blood test for free T3 along with free T4 and TSH. If your T3 is low or under range and the T4 is high or over it may be that this is the problem. I have had this and also had all the recurrent infections like you, until I made a big fuss one day and got the T3 blood test done. It came back under range, so I went to an endo privately, who prescribed T3 to be added to my Levo. Sadly not the end of my woes but more the beginning as I needed to get all vitamins and minerals at high levels, before I could manage to take T3 but I am slowly getting there, after a long period on T3 only like Shaws above.

Have you had any tests for Iron, Ferritin. Folate, B12, Vit D? These are all needed to help convert Levo and to deal with T3 if you get it prescribed. It is a bit of a journey but you have come to the right place. Good luck! xx

Maggiet profile image
Maggiet in reply to Hennerton

I have b12 injections every 12 weeks. My Vit D is good. Last year my folate was low but doc said not to worry as it was just out outside range! Funny how ranges are important when it suits them! Gp told me to get folic acid supplements from the chemist! I just feel that there is one thing wrong that is affecting everything else but I may be clutching at straws as I just want to feel better.

Hennerton profile image
Hennerton in reply to Maggiet

A full iron panel? This is what I had that showed that although I was just inside the ref range with most, taken as a percentage my iron saturation was low. Would never have found it on straight serum iron test.

Maggiet profile image
Maggiet in reply to Hennerton

I've started taking Spatone iron supplements, but yo be honest I've had that many other meds to take for shingles and sinusitis, plus levo, tramadol and citalopram that I've not been taking it for fear of my stomach rebelling. I'm going to ask to see an end next!

Hennerton profile image
Hennerton in reply to Maggiet

Yes, I understand. It is very difficult fitting in all the various doses, so as not to conflict with one another.

Maggiet profile image
Maggiet in reply to Hennerton

Sure is and I'm trying to vit D, soluble aspirin

and selenium into the mix as

well!

Hennerton profile image
Hennerton in reply to Maggiet

Two Brazil nuts give a day's requirement of selenium, so I eat those every day, which is easier I think, unless you don't like them.

Maggiet profile image
Maggiet in reply to Hennerton

No I love them! I'm off to the shops shortly so I'll get some. Thank you for the tip!

Maggiet profile image
Maggiet

Yes I did that over 2 weeks and it was normal.

nobodysdriving profile image
nobodysdriving in reply to Maggiet

normal as in minimum 36.5 and max 37 at waking? Also just the temperature does not give a diagnosis of hypothyroidism or inability to process thyroid hormones properly.

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