hi just joined today. So last summer I was sweating profusely and getting out of breath. I thought it was due to weight gain so enquired to my gp about wegovy! He declined saying bmi wasn’t high enough and sent me for full bloods and discovered my thyroid was overactive (38 with normal range being 12-22). As I say my weight has actually increased which I know isn’t the norm for overactive.
He referred me to endocrinology when I rang them to see how long the wait is they said it could be 12-18 months. So I went private and was started on 20mg Carbimizole while I wait to be seen by my nhs hospital for scans etc. I’ve been on carbimizole for roughly six weeks. I had my first bloods done and it’s gone right down to 12.7. The T3 is still showing as abnormal. My next bloods will be due in about a week so will be interesting to see if it’s continued to drop below 12 into the underactive range.
But over the last few days I have developed a rash all over except for my head. It’s really angry looking almost like measles some very large circles but thankfully not itchy. Not sure if I’m meant to use anti histamines or stop altogether. I’m new to all this so sorry if missing any crucial info.
Any advice welcome.
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20mg dose almost certainly needs to be reduced now or FT4 will continue to fall at too fast a rate.
Sometimes FT3 can be disproportionately high. This means your FT4 will drop below range before FT3 is normal.
If it doesn’t balance you may need use “block & replace” higher anti thyroid to fully block thyroid producing & an added replacement hormone (levothyroxine).
You can take an anti histamine along with carbimazole.
Alternative antithyroid PTU is side affect to carbimazole severe.
Hyper can be transient. With Autoimmune thyroiditis ( Hashimoto’s) this can begin with hyper. the immune system attacks thyroid & the damaged thyroid cells release store of hormone resulting in temporary rise but ultimately the function is reduced.
Carbimazole is wrong treatment.
Graves causes thyroid to be stimulated continuously. Most lose weight but 10 % gain weight likely due to low energy / increased appetite.
Thyroid Antibody test help confirm cause but dr do not always test the correct ones. What antibodies tests were completed?
Ranges can vary between lab machines. So can vary in same area.
FT3 now in range, ask if you can reduce carbimazole by 10mg. Doctor likely focusing on TSH - it will take time to respond. That fact it’s risen a tiny bit is good sign. In some cases it remains at 0.01 permanently even if FT4 & FT3 within range.
You should have a patient information leaflet with your prescription it advises what to do with possible side effects. See below, I’ve cut and pasted part of the PIL for you.
I would say you need to consult whoever prescribed your carbimazole straight away. Just to be on the safe side.
It could be nothing- it could be something. I used to get sore throats, first time I worried and had blood tests, second time we adopted a ‘wait and see’ policy which was fine.
4. Possible side effects
Like all medicines, this medicine can cause side effects, although not everybody gets them. The side effects usually happen in the first eight weeks of your treatment. Do not be alarmed by this list of possible side effects. You may not get any of them.
Allergic reactions
If you have an allergic reaction, stop taking Carbimazole and see a doctor straight away. The signs may include: sudden rash, swelling or difficulty breathing.
Stop taking Carbimazole and see a doctor straight away, if you notice any of the following side effects:
Any infection such as a sore throat or mouth ulcers.
Fever.
Unusual bruising or bleeding.
Feeling unusually tired.
You are feeling generally unwell or think that you may have on infection
Angioedema, a serious allergic reaction with symptoms that may include swollen tongue, lips, face or throat
Stevens-Johnson syndrome, a serious illness with blistering of the skin, mouth, eyes and genitals
In addition, if you experience any of these symptoms while taking Carbimazole you should also contact your doctor immediately:
Liver problems such as yellowing of the skin or white of your eyes (jaundice).
Nerve pain
Muscle pain or weakness.
Swelling of lymph nodes.
Swelling of glands in your mouth.
Feeling faint (low blood sugar).
Kidney problems, with symptoms that include a reduction in the amount of urine passed, fluid retention and blood in the urine.
These could be signs of muscle problems, jaundice or inflammation of the liver and under medical supervision your doctor may want you to stop taking the medicine and carry out some blood tests on you.
Do not stop taking Carbimazole until you have consulted your doctor.
Carbimazole can sometimes cause bone morrow depression which causes a reduction in the number of blood cells and reduces the ability to fight infection. If it is not treated as soon as it is detected the condition can become life-threatening. Your doctor should carry out tests to check for bone marrow depression before restarting your treatment.
If you get any of the following side effects, they normally go away while you keep taking your medicine.
The following side effects are reported with a not known frequency (frequency cannot be estimated from the available data):
Other side effects include:
Feeling sick (nausea).
Headache or feeling dizzy.
Skin rashes, including urticaria (nettle rash)
Itching.
Stomach upset.
Painful joints.
The following side effects have also been reported:
Hair thinning.
Changes to your taste.
Inflammation of the pancreas (acute pancreatitis)
Lung problems, with symptoms that include shortness of breath or a cough
Thanks so much. Seems like I should stop immediately. And speak to gp. Many years ago, like 20, my thyroid tests came back abnormal and I was sent for ultra sound and the dye scan. With the ultra sound he said it was lumpy and bumpy but we’ll leave it be. I wonder if it’s more a case of nodules ie they need burning off or whatever it is they do rather than medication? Sorry I really am not knowledgable on the topic.
Sorry can’t help you with nodules, but I’m sure someone else on here can.
I had straightforward Graves disease in 2012. I was treated with block and replace - it took a year all in. I was started on 20mcg by GP - like you and after a blood test at 4 weeks I got a letter from my consultant who I didn’t see for three months from my GP’s diagnosis telling me to get more carb and double the dose. When I saw the consultant I started on the replace part with thyroxine.
I’d speak to either the consultant you saw or your GP about the rash as soon as you can and go from there - one things for sure if you stick with this site you it won’t be long before you become very knowledgeable about the thyroid. 😉
It means you're not really hyper. It means you have Autoimmune Thyroiditis - aka Hashi's. It means your doctor is a donkey! You should not have been prescribed carbi.
What carbi does is drastically reduce production of thyroid hormone production by the thyroid. It has no effect on the thyroid hormone that is already in the blood. So, if you have Hashi's, as the high levels are only temporary, they will come down by themselves and as your thyroid is no-longer making hormone, you will go hypo pretty quickly. But doctors don't understand any of that, and don't know the differences between Hashi's and Graves'. Your FT4 was high but about the right level for a Hashi's 'hyper' swing, not high enough for Graves'. You need to speak to someone rapidly and get off the carbi or you are going to become very hypo.
So you have autoimmune HYPOTHYROID Disease called Hashimoto’s
Carbimazole should not be prescribed for hashimoto’s
Yes your results were HYPER …..but this was only a very temporary hashimoto’s flare …..where as thyroid cells breakdown after after an immune attack they release a TEMPORARY excess of thyroid hormones
After each hashimoto’s flare your thyroid will be a bit more damaged and more hypothyroid
Your Ft4 now too low
Get an appointment with GP
Carbimazole needs to be stopped
You also need coeliac blood test
Rash could be gluten
NICE guidelines that you should be tested for coeliac at diagnosis of autoimmune thyroid disease
Depends what went from 32 - 28. If it was FT4 (12 - 22) the variation is slight. Levels will fluctuate daily in any case.
Graves tends to have very high levels. 3x norm & can only be confirmed by testing TSI or TRab antibodies. TPO & TG can be positive with but hashis & graves, both are autoimmune.
If dr not tested TSI or TRab they are assuming Graves by funtion levels without evidence.
The other possibility if one of the nodules if over producing. This can cause gradual continuous rise is levels. I the cause on my hyper. This can occur with or without autoimmune
Having positive TPO is more likely mean you are heading to under active levels.
a rash can be caused by all sorts of things and I would have thought an allegic reaction to carbimazole would have occurred sooner. Need to see GP with rash.
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