Carbimazole & hives

[ParisianNight]

Hi, new here. I was diagnosed with Graves disease from a thyroid scan two months ago. I've been on Carbimazole for three weeks ( didn't want to deal with side effects so delayed taking it). Yesterday I woke up with patches of hives on my legs and hips. They spread through the day until they were all over my body. I took three Piriton through the day but they didn't help. 111 sent me to A&E who also suggested Piriton but ended up giving me a different antihistamine. The itching was driving me insane! From the threads I've read on here this seems to be normal. I don't want to keep taking Carbimazole if I have to take Antihistamines as I seem to be immune to them!

[RedApple Administrator]

ParisianNight, Hives are often a sign that your thyroid hormone levels are too low. This might be because your carbimazole dose is too high for you at this stage.

Please say what dose of carbimazole you are taking, and add details of your thyroid blood test results at the time you were prescribed this dose.

[ParisianNight in reply to RedApple]

Hi, I'm on 10mg. They didn't tell me the test results, only that the monthly blood tests should a steady slide in to hyperthyroidism. The blood test was negative for Graves but the thyroid scan showed I have Graves. That's all the info I was given.

[PurpleNails Administrator in reply to ParisianNight]

Did you have ultrasound scan or uptake scan?

Uptake scans shows function through thyroid but ultrasounds don't distinguish function, they evaluate size & health.

Ultrasound do show swelling and vascularity for example but these aren’t features unique to Graves you would see with other autoimmune.

Recommend you obtain both a copy of scan report & your blood test results to see what’s been tested. You may not have had all the relevant antibodies tested.

10mg is a very low starting dose. I suspect you’re being treated for low TSH. Your FT4 & FT3 may not be abnormally high & we do learn of example of members given carbimazole for low TSH even when FT4 & FT3 are low/abnormally low.

If antihistamines do not help your hives, you may need to switch to the alternative antithyroid. Second option is PTU, propylthiouracil. You may need to take more tablets when taking PTU.

nhs.uk/medicines/carbimazole/

bnf.nice.org.uk/drugs/propy...

The link to carbimazole will give a link to yellow card report where you can report your side affect.

About antibodies.

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies) TPO & TG “autoimmune” - Hashimoto’s (also present with Graves)

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

TSI (Thyroid-Stimulating Immunoglobulin) Graves.

[ParisianNight in reply to PurpleNails]

I had two tests done. The uptake one where I drank the iodine then they did a scan, which I think might have been the ultra sound one cos it looked like an MRI scanner. Then I think she measure something with a metal rod. I then had another thing done which again I think was measuring. They didn't explain anything, nothing about what levels were, or what the scan showed other than they showed Graves disease.

[PurpleNails Administrator in reply to ParisianNight]

The uptake or nuclear scan is where radioactive iodine is taken either by drink or injection and after a set time a CT image is taken.

With ultrasound scan you have a transducer like a wand pressed against the area being scanned.

Terrible you had nothing explained. Doctors rarely volunteer all the information, as a full explanation might result in questions from you.

You are legally entitled to your records. You can always contacting the hospital depending directly and requesting they post you copies of blood test - especially if recently & date known.

If there’s any obstruction there are other formal ways to request copies of hospital records.

Look on the hospital website as most have a contact email for data or health records coordinator. It might be listed as health records department / library. If not on website would try the switchboard and ask it there’s a medical records department.

Hospitals usually have their own application form (this is similar to subject access request- SAR) where you can request single, or entire record. I have done both. The single record was emailed back quite quickly. The full record being a larger record was posted. ID and a witness signature is required which I was able to submit via email. Photo copies via post can be used too.

GP surgeries can offer online access which is useful to set up if available.

[ParisianNight]

Ok, I had both the ultrasound and the uptake scan. I've asked for my records from the GP and she issued more antihistamines. I'm going to phone Endo clinic tomorrow and ask to be taken off Carbimazole

[pennyannie in reply to ParisianNight]

Hello ParisianNight and welcome to the forum ;

Graves is said to be life threatening if not medicated - so ask to be switched to Propylthiouracil - PTU - for ease of speech - and at least have a back up plan while we wait to see exactly which antibodies were found over range and positive in your blood.

Arrange on-line access wit your local surgery and then you have an up to date of where you are in the system, what's been tested, the results and ranges, and what needs following up.

Graves is an auto immune disease and something has triggered your immune system to turn and attack your body rather than defend it.

All the AT drug does is put you in a ' holding position ' like a plane waiting to land while we wait for your immune system to calm down.

What symptoms were you dealing with that made you seek medical advice and presume you are still tolerating them ?

If you do have Graves the most recent research is suggesting that the longer you stay on an AT drug the better the longer term option :-

pubmed.ncbi.nlm.nih.gov/338...

[ParisianNight in reply to pennyannie]

Hi, I had zero symptoms. I asked for a blood test to check if I was perimenopausal as women in my family start the menopause at 39 and I was 39 at the time. They did the blood test and it showed my thyroid levels were out. I had monthly blood tests for 6 months before being seen by Endo and they told me the blood showed a steady slide into hyperthyroidism but that the antibodies were negative for Graves. I had the uptake scan and ultrasound to check for nodules and they said the scans were positive for Graves and issued me Carbimazole. There was no explanation for anything and the meds didn't even come with an info leaflet about side effects. I looked it up online. So I'm a bit bewildered by it all.

[pennyannie in reply to ParisianNight]

Ok - so yes, read up on the Patient Information Leaflet and ask to be switched to PTU the alternative AT drug and your dose might be higher than what you are on now, but don't worry about that, it's just a different strength - no worries.

You need to get details of these blood test results that show you ' sliding ' into hyperthyroidism - and share the TSH, T3 and T4 results and ranges on here with forum member.

Hashimoto's is another thyroid AI disease that starts off in a very similar way to Graves and in some people the only way to know the difference is through the antibodies found in the blood :

Graves is positive and over range TR ab or TSI :

Hashimoto's is positive and over range TPO or Tg AB :

[ParisianNight in reply to pennyannie]

Thank you! You have been so much nore helpful and informative than the Endo clinic have!

[pennyannie in reply to ParisianNight]

Ask for copies of these blood tests - you are legally entitled to them - and ask to be registered for on-line access so you can see everything as it happens going forward.

The receptionist should be able to give you copies and a form to fill in for on-line access.

[ParisianNight in reply to pennyannie]

Ok, Update. Finally, Endo clinic phoned me back. He immediately suggested radioactive iodine or surgery. I said no so then he suggested PTU. It's a little worrying that they're already suggesting surgery when I was only diagnosed a few months ago and was on Carbimazole for three weeks! He's putting the prescription in the post, so hopefully things will be sorted now.

[PurpleNails Administrator in reply to ParisianNight]

I do hear of Doctors tending to push for definitive treatment early on & rushing to reduce antithyroid - causing “relapse”.

I was told RAI would likely be my recommended treatment and given leaflets to “answer all my questions about it” during 1st consultation. I do not have autoimmune, I have a nodule which was strongly suspected but not confirmed at that stage.

I thought that was quick, but I have heard from a member whose 1st appointment was postponed and they were told over phone before 1st appointment they would recommend RAI as next step.

Strongly recommend you obtain not only blood test records but scan reports.

There are often details in reports which don’t get passed on.

[pennyannie in reply to ParisianNight]

Ok then - hopefully you will feel more comfortable on PTU :

Have you now registered for online access so can see the original blood test readings showing you ' sliding into hyperthyroidism ' ?

If you have, then I suggest you start new post with these blood tests and ranges so all forum members can ' chip in ' and support you through this phase of hyperactivity.

It seems at this point in time the name of the game seems to be to reduce O/P waiting list times and move patients through the system as quickly as possible and I'm saddened that you have already been offered definitive treatment, without there even being and a formal blood test diagnosis of over range and positive Graves antibodies - let alone a thought being given to saving your thyroid and giving the AT drugs a chance.

ncbi.nlm.nih.gov/pubmed/306...