before Christmas my thyroxine was put up from 150 mg to 200 mg a few weeks later my eyes swelled up that bad I had to go a and e they said I’d had an allergic reaction to something so they gave me steroids to take 8 a day for 5 days when I finished them I’ve noticed they are still at it and I’m scared there going to do it again , I put my thyroxine back down to 150 thinking this could be the cause if anyone has any knowledge of this please could you let me know I know I have also got some inflammation in my body which I found out through a stool test but nothing ever came of it thankyou
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Baileyleigh123
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I suggest you consider the possibility that it is the precise formulation of levothyroxine and you are suffering an adverse reaction.
It might be worth seeing if you can get hold of another make which has different exceptions (inactive ingredients). But keeping on with the ones you have looks like a very bad idea.
Which make are you taking?
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK-licensed products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), British National Formulary, NHS Drug Tariff, etc. PLUS how to write prescriptions in Appendix F.
Now also includes latest pricing information from dm+d..
Also includes links for anti-thyroid medicines (but not product details).
Although lactose is a problem for some, most people seem OK with the rest of those ingredients. Some find lactose-containing levothyroxine is a problem even if they have no other evidence of lactose intolerance.
I suggest asking if you could at least try Aristo Vencamil. It is lactose-free and quite a number of members find it better tolerated than others.
It reads like an allergy to something - any new products ?
A couple of months ago your eyes were red and sore - was this the same issue now worse or a different problem ?
I'd try an optician just to be sure -
I was told by my GP I was dealing with conjunctivitis and given a tube of heavy duty grease - when no better after a week I travelled back to see my own optician who after looking behind my eyes -put me in a Taxi - to go directly to Moorfields Eye Hospital -
I'm not saying this is your problem - but an optician is more likely to have seen more to know how to help you - otherwise its A & E ?
Thankyou if they come back I will try that I put a picture on how bad they were but someone turned posts off on it was just showing people so they had an idea x
I only switched off replies there to avoid comments being split between two threads. When members have two threads at the same time, we often see confusion and repetition of questions, suggestions, etc.
I added a link from that post to this thread. And from your original post in this thread to that one with the photo. So members should find it quite easy to jump between the two posts.
oh my goodness you poor thing they look incredibly painful. Surely you need a steroid injection then course of steroids to get that inflammation down ? They steroids should h have been tapered down very slowly with those eyes id say ? I’d be going to A and E xx
optician would prob send you straight to eye clinic at local hospital so it wouldn’t be a bad idea to go opticians if can get in today especially if you think A and E is going to be a long wait . I would say You definitely need bloods done to see if they can piece together what’s going on 🤔
Ps I’m not dr 👩⚕️ but had exactly same thing with eyes and it wasn’t an allergic reaction . I really hope you get some help soon 😘
They have gone down now that’s what they were like when I went to the hospital but I’m dreading them going like that again they have still been a bit red and itchy what was yours caused through instead of keep giving me tablets they need to get to the bottom of it thanks for the reply x
Well .. very long boring story but they thought it was dermamyositis but now 5 years on I’m Undifferentiated connective tissue disease on lupus spectrum . Did hospital do you bloods ? X
Your eyes actually look quite like mine do when I have eczema around my eyes. I never found a cause for it and it has been happening occasionally since long before I was ever treating my thyroid.
I first developed eczema when I was 9 years old and I'm now in my 60s. I (mostly) got rid of the eczema in my 50s and the things that helped were increasing my Vitamin B12 level to top of the range or over, despite the fact my serum B12 was never low. But the important thing for me was I had to supplement with methylcobalamin which is the active form of B12. I had previously supplemented B12 with cyanocobalamin which is the cheapest form of B12 there is and it hardly exists in nature.
The other thing I need to keep my eczema at bay is methylfolate which is the active form of folate. I had previously taken folic acid which is an artificial form of folate. I aim to keep my folate level at the top of the range but not over the range.
So to summarise - my eczema and my skin generally has massively improved since taking :
Methylcobalamin - I take my B12 to top of range or over - it isn't poisonous at high levels.
Methylfolate - I take this to top of range. If there is no top of range I aim for 20 micrograms/L.
Both the above supplements can be bought without prescription. If you decide to try these I wouldn't buy a lot the first time you buy if you haven't tried them before, just in case it doesn't suit you.
I don't know why doctors do this - it is far too big an increase all in one go. Your dose wasn't low at 150mcg, so increases should have been done at a slower rate.
I would have suggested adding 12.5 mcg per day then getting tested 6 - 8 weeks later. If your results were still too low when tested I would then have added a further 12.5 mcg per day for another 6 - 8 weeks, and then another test.
Some of us suspect that big increases in dose all in one go are given in order to set the patient up to fail so they stop asking for increases in their dose - but then I'm cynical and don't trust doctors.
The closer you get to an ideal dose the smaller the dose changes should be, up or down. Some people have found that they miss their "sweet spot" by raising (or dropping) dose too fast.
Your eyes look identical to mine did a couple of years ago. Dermatologist diagnosed periocular dermatitis and prescribed Tacrolimus which cleared it up in a couple of days. She told me to use it at the first sign of them flaring up again. I blamed it on a reaction to the Covid Jag but I could be wrong. It hasn't come back thank goodness. I have TED but this was different. It was the skin around the eyes that was red and inflamed.
Yes I can empathise with you. I was amazed how quickly the Tacrolimus cleared it. GP sent photo to Dermatologist who sanctioned it as I don't think GP can prescribe it. You may want to check with your GP if he would do this for you.
The ones they gave me were really good I had to take 8 every day for 5 days but when I finished them I noticed it coming back a couple of days later they had give me extra so I’m just finishing them at 10 mg a day where the original dose was 40 mg I really hope it doesn’t come back haven’t got many left x
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