Hi! I'm new here & relatively new to being hypothyroid too (Dec 2022) & I'm so glad I found this forum for help! Sorry for long description & awful pics, but I'm desperate now & need this lovely forum's opinions. I have searched the site for similar issue to my own too. Began on 50mcg Levothyroxine (Accord), recently increased by 25mcg alternate days since Sep 2023 (various brands). Since then, I've developed an intensely itchy & increasingly spreading rash. Started on one arm & now covers most of my body! Nothing had changed in my life but the drug brand, so I narrowed down the 'filler' ingredients to only two differences (Acacia & Sodium Citrate). GP said it wasn't that? He tried me on various stuff - all to no avail.. washing my body in anti-dandruff shampoo, washing in dermol500, a course of steroid cream, no change. I've had to beg for a blood test to see if anything else is going on & he's finally agreed & will test for B12, Liver & Kidney functions. I've also found (myself) a chemist who's ordered Accord & Wockhardt brand which doesn't contain Acacia or Sodium Citrate, been taking them for a week now, but rash is getting worse. Just wondering if anyone thinks this could be the levothyroxine active drug causing this, rather than the inactive fillers & my body has just been tipped over my tolerance levels since the increased dose. Thank you so much if you've read to the end of this!!
Itchy Rash Help Please!: Hi! I'm new here... - Thyroid UK
Itchy Rash Help Please!
You poor thing.
You might want to look at Dermatitis Herpetiformis. Its linked with thyroid disease and also coeliac. Removing gluten from the diet strictly can bring it under control.
hopkinsmedicine.org/health/...
Thank you so much!! I will definitely look into this. Considering just stopping the drug altogether for a little trial, just to see if it made a difference, would rather have the symptoms than this.
To get tested for coeliac and the associated dermatitis you do need to still be on a gluten containing diet.
Ahh, ok thank you@
This could be urticaria (hives). Have you tried any antihistamines?
'wondering if anyone thinks this could be the levothyroxine active drug causing this,'
Levothyroxine isn't a drug. it's a replacement hormone. It's not alien to the body, in the way that actual drugs are. Sometimes, it can take time for the body to get used to receiving a hormone that doesn't come via the normal route (i.e. from the thyroid).
There is a connection between urticaria and autoimmune conditions, especially thyroid.
Here's an article that might help.
The Connection Between Urticaria and Hypothyroidism verywellhealth.com/thyroid-...
I'm taking cetirizine, maybe need a different one.. but thank you very much, I'm just so grateful for any suggestions to understand & help manage this .
Try chlorphenamine maleate - you can get this at a pharmacy counter. If that doesn't help, there are stronger antihistamines that your doctor can prescribe.
Oh my goodness, thank you! Im going to chemist first thing in the morning to get some! I was told I could take antihistamine with my Levo, but not told which to try, so very grateful!! 😊
There's also Loratidine, and Fexofenadine available from the pharmacy. Just try different ones as we're all different and the one that works for one person won't necessarily work for another.
It looks like what I've got! I've been on thyroid hormone replacement for over 20 years, but I don't take levo. I'm on T3 only. And this rash suddenly appeared earlier this year. So, not the same circumstances as you, at all. But looks the same. I put it down to stress because I've had a lot of stress this year, one way and another. And, it gets worse whenever the person that is causing this stress contacts me. I immediately start itching, even if I haven't itched for over a week. So, is there any unusual stress in your life at the moment?
Arrr, I'm sorry to hear that! Must be horrendous to deal with your stress as well as this on top! 😪Nope, I count myself very lucky that the only stressor in my life is this itch & rash at the moment!
Everything crossed that your situation improves for you 🤞🏻🤞🏻
Your dose could be too low. Brand changes won’t have helped possibly, but I suspect the dose as skin issues are common in hypothyroidism and may reemerge or emerge during treatment optimisation for some as has happened to me.
Recheck TFTs.
Meanwhile, I recommend the Eucerin brand products and a good friend recommend hydromol ointment.
Thank you! I'm learning it's a complex condition!
It’s certainly no walk in the park. I believe the complexities exist solely due to the lack of knowledge and care within the medical community for thyroid diseases.
I’m surprised the serioud cream didn’t work unless it was a rubbish dose. Mine was prescribed by dermatologist (the good stuff she called it and she wasn’t wrong) and GP has kept prescribing it occasionally. Though steroid use isn’t perfect either.
Good luck!
Hi, I understand how you feel as it reminds me what I am going through at the moment. I also take Levothyroxine 100 ug (Accord) since my full thyroidectomy . Since August, rashes, itchiness, severe dizziness and tiredness. I had so many blood tests including TSH which is now in range after having been out of range for 8 months despite tetration x4. Though I went swimming all year now I am covered with a rash with faintness after a few mn .
The mast cells seem to release too much histamine and overreact unnecesarily. Are you anxious and stressed? For me, it seems to be a big trigger.
I hope your antihistamines will work well. Take care.
it looks like urticaria to me. I have been diagnosed with cold urticaria with anaphylaxis (blood pressure drop, dizziness and also fainting).
Acacia is an horrible additive ingredient and your GP is wrong it can cause issues if you’re allergic to it.
Must admit, it was my first thought that it had to be down to one of the ingredients.. seemed logical to me, but Im no expert, just researching my own thoughts. Wonder if theres a test you can get...
I know in my case that it was Acacia because I switched to a brand that did not use this acacia and my issues cleared up.
No way!!! That's awesome you found the cause 👏🏻 How long did it take your itchies & rash to settle after you'd switched please, if you don't mind me asking Batty1 ? I'm sooo hopefull it's that for me too, & I might see an improvement in a few weeks.. 🤞🏻🤞🏻
I'm with Batty1 on it being to do with Acacia Powder. My son and I have been suffering skin problems because of a change of Levothyroxine in 2010. There has been no let up with the skin problems since then, although I am now on NDT and have been since the beginning of 2018.
Thats shocking! Im so sorry you've both been suffering..pardon my ignorance, but what's NDT?Did you & your son manage to get meds without acacia added? I've finally got some, but have read it can take around 3 weeks for the body to flush the suspect allergen out of your system once it's been stopped, no idea how accurate that is though 🤔
NDT is Natural Dessicated Thyroid Urbanski . It was the original thyroid medication from the late 1800's until a synthetic one was brought out in 60/70's (I think). It was more than an allergy to our problem, and I think it may be to do with the fact that heat treatment of Acacia Powder was changed, although I am not sure when this was. We have now been suffering with this problem for 13 years.
That's just so hard for you's!!! 😪 It doesn't seem a big thing to ask, in this day & age, with all the medical knowledge, for something to help & not cause massive 'other' issues to deal with 🥺🥺
Hi Urbanski
That's a really bad rash.
I get that sort of rash with maize corn. And maize corn is the filler for a lot of/most standard levo.
That's why I have to get mine compounded (NDT) without maize.
Then I developed a reaction to the microcrystalline filler.
Now have levo compounded with sugar and no reactions so far.
It's not fun having to deal with an allergic reaction in addition to calibrating your dose.
Wish you luck, Urbanski.
Thank you for this. What a carry-on trying to sort it all out, wish the GP was as helpful at making suggestions as the folk on this forum are!How long, if you can recall, did it take for your rash to calm down after you'd switched? Did it take a few weeks? Thank you!
I never took standard levo due to past reactions to maize corn.
Last time I had corn was so long ago at a Mexican meal where I took care to avoid corn. But it must've been in the food somewhere as the next day came out in an all-over body rash. Can't remember how long it took to clear, sorry. But I've always had this reaction to corn plus, I get irritable -liver reaction?
Still have a box of standard levo at home, untouched, due to assuming dr wouldn't prescribe anything I was allergic to. And he made me wait weeks before he would then prescribed NDT.
Totally agree with you, Urbanski about wishing our drs were as helpful as people on this forum!
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