Hi, recently diagnosed as having hypothyroidism and given Levothyroxine( Mercury Pharma) by my local GP, i started a 50mg per day dose in mid November and by Xmas/New year had come out in a severe rash and itching, so stopped the meds and reported to my GP eventually the side effects started to subside.
After a discussion with the GP it was decided to try a smaller (25mg) dose alopngside anti histemines, but unfortunately again after about two weeks the itching and rash/skin issues returned, but so bad this time i had to go to A & E due to the effects.
Has anyone had or heard of this kind of reaction ? Any advice from anyone?
Thanks in advance
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chundummy
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what where your thyroid and vitamin results BEFORE starting on Levo
Which brand of Levo was 50mcg tablets
Many people find they can only tolerate one or two different brands
Most common one that causes issues is Teva
50mcg is only the standard STARTER dose
Levothyroxine doesn’t “top up” failing thyroid, it replaces it ….
You will need higher doses over coming months
25mcg too low and more likely to exacerbate symptoms
Do you know if your hypothyroidism is autoimmune
Has GP tested thyroid antibodies
Very common to initially get all sorts of reactions
Hives is common
Gluten intolerance can become more apparent on Levo and can cause itching/rash
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
My Weight is @ 97kg, my GP hasn't provided anywhere near that level of detail in regards vitamins etc, but that's good info I can ask for.My blood tests have been taken randomly at various times of day with no advice about eating/drinking etc
Mercury pharma for both, I put a 'yellow card' in after my trip to A & E, hope its OK to add a photo...This was also on my shin, spreading across my back and left arm and it did get worse
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
While offering antihistamines alongside that levothyroxine wasn't totally ridiculous - I would have taken rashes, etc., very seriously and switched to an entirely different make.
It is not as if there are no options - there are several. Including prescribing two 25 microgram tablets rather than one 50 microgram tablet. My UK medicines document (linked below) lists ALL UK levothyroxine products. Including listing all ingredients.
Are you aware of any sensitivities or intolerances? Maybe lactose? Or acacia? Or anything else? Some people are sensitive to apples, latex, or other things and such sensitivities sometimes transfer to other broadly similar substances.
We do see quite a number of members with intolerance issues but usually not as bad as you appear to be describing.
I think you need to try to see what might be causing the issues. Then see what can be done to try a make that avoids those ingredients - but very, very carefully and with support from your GP or whoever.
I would also file a Yellow Card report. In fact, I would file a separate report for each product.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
helvella - World Desiccated Thyroid
Contains details of all known desiccated thyroid products.
helvella - Thyroid Hormone Medicines - RotW
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Hi, no, i haven't suffered from any intolerences to anything so far in my life ( apart from mild hayfever), my GP hasn't been great with options/information, this is the main reason i joined Thyroid UK, to try and learn more, so i am very grateful to eveyone for responding to my post.
my GP has been pretty dismissive to be honest"i cant be allergic to levothyrixine.." , i have another appointment this Wednesday so i'll see what comes of that.
also, despite being diagnosed i'm not sure how i'm supposed to 'feel' i dont think i suffer from the symptoms ive read about, other than feeling less tolerant about being cold and possibly fatigue, but as a shift worker it's not always easy to identify illness/symptons over just being worn out.
Do you have the blood test results on which you were diagnosed?
(And any others - before or since.)
Being allergic to levothyroxine itself is unlikely but every actual real product has other ingredients (excipients) and impurities and breakdown products.
And some don't do well on levothyroxine but that can be, and would be expected to be, due to other issues rather than allergic reactions.
Levothyroxine appears able to make us more sensitive to some allergens. But I'm not thinking that looks likely in your case.
No, but i will ask at my next appointment, as i said the only information ive been given is 'your thyroid levels are low' but until now i've had no idea what i should be asking for and looking at blood test wise, at the moment i'm not keen on taking anything as its taken two weeks so far for the side effects to start to recede.
can i ask for a print out of my last blood test results from my GP?
Start of my thyroid journey 13 years ago I had reaction to any form of tablet thyroxine which started an hour after taking my very first pill. But i also couldn't tolerate thyroxine after 14 months of every trial and error combination. My reaction was severe tongue swelling with every brand ( which I'm funnily going through at the moment)Still not sure what in the tablets caused it as they say you can't be allergic to thyroxine it's self and it's the fillers and binders that cause the issues.
I can't take antihistamines due to knocking me out cold within an hour and still floored day after. That is even with non drowsy prescription ones.
Liquid thyroxine might be what you'll need if reaction carries on when trying other thyroxine brand.
i did read there seems to be two types of reaction, one that occurs very quickly within hours or, like mine after about two weeks or so, the annoying part is that it takes just as long for the efects to subside,
I think it is going to be trial and error to see which brand you might be ok with. I know Mercury pharma was the worst for me and wockhardt the least. If they all give you this reaction then gp will have to look at liquid thyroxine.
You may find this post useful. It shows the extra ingredients in different brands of levothyroxine, taken from the patient leaflets. These are brands in the UK last December - still valid, I think, but gives you an idea.
Hi chundummy, I think I had a very similar path to you. Took blood tests for something unrelated and I was diagnosed with under active thyroid (whatever that was) without too many serious symptoms. Anything that wasnt quite right with me I put down to getting old and grumpy.
I started taking the Levo and having blood tests without any guidance on when to have them, when to take or not take meds etc etc.
Gradually started too feel crap.......miserable, thinning hair, the sorest itchiest rash across my back and chest and I stopped taking the Levo cold turkey (as it turned out not my cleverest decision).
I came on here and was given a load of fantastic advice and guidance.
Long story short.... I got my doctor to prescribe liquid levothyroxine instead of tablets and I split the dose. Half at bed time and half in the morning. Not perfect but I am coping with this better.
The doctor also gave me Elocon ointment for the rash and this was fantastic, cleared the rash up in no time.
Below is a link to my original post, there may be info in there that helps you. I know how you feel.
Hi, yes! a very similar path indeed, it may sound wierd but i have no idea how i'm supposed to feel having hypothyroidism, i started losing my hair years ago( cheers dad, also bald😆)energy levels and sleep patterns rise and fall, but i can put this down to shift work, i've been off shifts for a few months due to an accident(which is how the hypothyroid was detected )and started sleeping well,i still have enough energy to get to the gym a few times a week and try to catch up with friends and family, i do seem to feel the cold quite a bit more though.
the rash/reaction to whatever was in the tablets became intolerable to the point i had to A & E, with what i can only describe as what felt like severe sunburn as well as feeling cold inside.
the effects have gradually subsided after stopping the meds and the prescribed creams have helped hugely with the rash/spots.
Yeah. Unfortunately had a pretty bad motorcycle accident in Germany, the results were picked up in routine bloodtests, then I got myself retested once I got back to the UK.Previously to that, haven't been to the DRs for years, and can't remember when, if ever I had blood tests before.
Definitely share the exact results (with ranges) here.
There are two kinds of people - those who have hypo undetected and doing damage for years until finally getting the blood tests need, and this start to get the treatment they need.
Then people like you - accidentally getting tests revealing something about thyroid before any symptoms. Caveat - depending on the blood tests you may or may not have a thyroid issue and may or may not need treatment now or in the future!
But if you share your bloods, this forum will share its collective wisdom and give you valuable insights on thyroid.
At the docs on Wednesday for a review & chat, thanks to everyone like yourself on this forum I'm armed with a lot more information. I'll see if I can get more detail on the last blood test results, there doesn't seem to be that much (on my NHS app)compared to some details people have posted .
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