I have autoimmune hyperthyroidism, awaiting diagnosis from a consultation with NHS endo but it’s likely Graves given my blood markers.
GP prescribed me 20mg of Carbimazole which have been great for 3-4 weeks, only last weekend I have come out in hives. They are traveling, so one day it’s my breast, my neck, the next it’s my forearm. My hands were itching like crazy at the weekend but thank fully that’s stopped.
I’m reluctant to complain to the docs as I am determined to be a remission case after meds without intrusive surgery.
It would be great to learn from anyone’s story on your experience with Carbimazole and Hives.
Thanks!
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Hungryallthetimes
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I’m straight up hashis. Have had bouts of unexplained allergic reactions/hives my whole life. I have not yet connected them to my thyroid … although everything else is so I am always on the lookout for experience/explanations.
That being said, looks like you are new to the forum, and if I’m reading your bloods right, you didn’t actually test positive for graves antibodies (?) but looks like you definitely tested positive for hashis/hypo. Right?
What Purplenails notes below - you might be hashis with a hyper swing. Which means you should, as we all should, just be vigilant in your symptoms and bloods to ensure you are treating the right thing for the right length of time.
I might have transient hyper but it’s been ongoing for 6 months so probably not. I had a baby 2 years ago and thought it was transient postnatal thyroiditis but again, probably not! I went down to BMI 16 and had mega hand tremors. All this has gone now, which is great.
Just this new itching!
It’s a bit of a rip that the NHS bounced my appointment out a month. Original appointment was next week but they cancelled and pushed me out. Hence losing my mind…
Hi, you have two posts and the advice you are getting is starting to overlap : )
But in response to your “all confusing” comment - this article has always helped me understand all the different antibodies - the ambiguity about some of them and the things that are certain and clear:
I know the internet has lots of different sources of varying trustworthiness. Actually not sure if anyone on the forum would have other opinions. But the article isn’t a bad place to start.
One of my symptoms when I had untreated Graves was awful itchiness, especially on the soles of my feet and palms of my hands, but I didn't have any rash. I was fine on carbimazole.
Urticaria (hives) and angiodema are both associated with thyroid disease and I've suffered with both on occasion throughout my life, sometimes really badly.
My guess is that your hives are a reaction to your lowered thyroid levels and will settle down when your body adjusts.
Came across your post just now and wondered how you were getting on? I have just come out of suffering urticaria 3/4 weeks into taking Carb...seems to be an expected timeline. The itching and hives lasted nearly 3 weeks but has nearly entirely gone now; I remained on Carb and took antihistamines when it was at its worst. Hope you are too better?
Morning, thanks so much for replying-really interesting to hear the similarities. I'm glad your heart has slowed! I too am waiting for my first appt, my third, with the last 2 having been cancelled 🙄. Just received my first set of bloods after starting the Carb and I'm worried to see my liver struggling slightly and my white blood cells starting to drop off. I'm hoping it's temporary, as were the hives, and that my next bloods in 4 wks time will give me confidence to carry on. Have you had yours checked? And are you still Hungryallthetime or has your appetite lessened?!!
I too had my first appointment cancelled. It’s poor form to have 2 cancelled, I hope it is third time lucky.
I haven’t had my bloods retested yet, assuming they’ll do this at the endocrinologist but of course I haven’t had any information whatsoever.
I have heard milk thistle is good to take for your liver whilst on carbimazole, I have some in my Amazon basket so will buy these without delay. How did all your other results come back?
Right I'm back! Hope you're well. Bar the Graves of course.
So I started taking 15mg Carb but when the hives appeared I reduced down to 10mg and have stayed there. My recent bloods are as follows...TSH still rubbish; FT4 just about in range at 20, previously 26 (11-22); FT3 8.7, previously 10.7 (3.1-6.8). My liver enzyme ALT is high, out of range for the first time ever and my white blood cells are dropping with lymphocytes being below range.
My GP must be decent as she ordered my FT3 to be tested without having to be persuaded but she's spoken to the endo who has requested that I increase my Carb dose to 20mg, something which I'm not going to do.... either they haven't bothered looking at my other results, or they don't know the connection 🤦♀️. I'm hoping the slow and steady approach will do the trick.
Are you in the UK? How did your situation compare to mine, and can I ask please which milk thistle you're getting? They seem to be such high doses online! Thank you so much for the tip btw, I'm definitely investing in some...so many to choose from tho, every bit of research takes forever!!
TRAb 3 (ref range 0-3.3) - the Dr’s note read equivocal which means can’t be read as positive or negative
TPOAb 170
TSH 0.01
Vits came back as fine
My heart rate this weekend has been great, down to 60’s! Feel awesome. I wish this could continue, naturally, but I’m worried of what may be in store after meds.
I’m presuming I’ll get a diagnosis of Graves but need to press on this and if my high TPOAb really does mean Hashi’s in store.
I gave birth 2.5 years ago, so the timeline of Graves following this event checks out. I believe (although unofficially diagnosed) that at 6months PPT I had a bout of postpartum thyroiditis that resolved itself but then in August last year Graves kicked in. Joy oh joy!
I haven’t bought the milk thistle yet but will do, I’ll buy an organic vegan one so it’s relatively pure, not sure on dose…
Do you have a view on diets restricting dairy / gluten for Graves and their validity?
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