I had my first appointment with my Endocronologist last week, it was a phone call. I have another appointment sent through for July, another phone consultation. I have only had telephone consultations with my doctor and bloods taken by practice nurse. I have been on Carbimazole for exactly 4 weeks and have developed hives on and off throughout the last week. Read that this can be a side effect and treating myself with antihistamines, which just about takes the edge off. Don’t really know what to do next.
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What is really important is to confirm what the doctors have tested & ensure they have determined the cause of your hyperthyroidism (by testing antibodies).
Often doctors treat all low TSH as Graves, but there are other reasons to be hyper sometimes the hyperthyroidism is transient and carbimazole drives down thyroid levels too fast & you become unwell with hypothyroid symptoms.
Have you been retested since starting carbimazole. What dose have you been given?
Hi thank you for replying. I have no result figures. I developed swollen ankles and feet and extreme muscle weakness after Xmas, had never happened before. As this didn’t improve after two weeks I got in touch with the doc who did full bloods for anything and everything. The test came back as very high thyroid hormone she stated 34, a week later whilst she was waiting to hear back from Endo the level had gone down to 30. A week or so later after doc spoke with a Endo I was put on 30mg Carbimazole. A week After starting med doc called me saying she was concerned with my liver function test and spoke with Endo and they decided to drop the dose to 20mg. The Endo called me for telephone consultation last week and told me to have bloods done every 4 weeks. At that point I had no rash, it arrived the evening of my telephone consultation. The hives have appeared 3 weeks into starting meds, antihistamine takes the edge off. I have luckily never had any medical issues in my 57 years. The experiences from others on this site are both useful and scary. Not sure what I should be doing or asking. I have another Endo telephone app in July. The swollen ankles and feet went down about 2 weeks after starting meds, the tremor I was experiencing has also settled down and I feel much stronger and more like myself. I haven’t physically seen anyone due to Covid restrictions on appointments. Sorry if this is long winded, keeping a diary now as I won’t remember all of it 🙄
Keeping a diary an excellent idea. Note down any symptoms, medications and any supplements you take. Recording appointment discussions and other things you need to raise and follow up. Get into the habit of obtaining test results to keeping track of your levels. Learning how to understand them and how medication is affecting them will help be your own advocate.
You can obtain blood test results in 2 ways. Online access is ideal. All practices in England should offer, other locations may also offer. Once full access set up you can view results & letters without involving practice staff. This can take time to set up so in the meantime. Contact reception, ask for print out of results from when you were diagnosed. Ask if you can collect a few days later if they need time to print out or if they need to “check with doctor” Don’t accept verbal or hand scribbled notes you need a copy with ranges (ranges vary between labs). They shouldn’t ask why but if they do just say for your records.
Adjusting dose is the norm. As the levels stabilise the dose must be adjusted to keep levels in range.
For full thyroid function you should have previously been tested for
TSH
FT4
FT3
TPO & TG Antobodies
TSI and or TRab is Graves suspected
Folate
Ferritin
B12
Vitamin D
Once you have your results start new post & we can offer lots more advice.
Thank you for all this, so helpful going forward. I have already set up online limited access with my practice, will make sure it covers all my info. Appreciate you advise 😊
I have spoken with my pharmacist, he said it is a known side effect and antihistamine is advisable and of course speak with doc. I have someone from the practice calling me back today, I have sent photos of rash to them. Thank you Prothero 😊
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
GP/endo should ALWAYS test TSI or Trab antibodies to confirm Graves’ disease
Have you had TSI or Trab antibodies tested
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid. Carbimazole is not correct treatment for Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, with both Graves and Hashimoto’s
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Thank you, I have registered for online access and need to request enhanced access which I will do when I go for my blood test next week. I will make sure I get a print out of my blood test. I am pretty sure I have only had a thyroid function test and liver function test so far. I will look into the further tests required. I have a lot to learn I think and again thank you for all this information 😊
Just to add that there is an alternative to Carbimazole - Propylthiouracil commonly referred to as PTU :
Do you have a Patient Information Leaflet with this anti thyroid medication as this, should be mentioned there, along with other possible side effects that may occur ?
Please do get confirmation of the diagnosis and the medical evidence needed before medication should be prescribed.
There are a few reasons why you have seemed to have gone " overactive " but not all reasons mean that you need to be prescribed an anti thyroid drug.
The antibody blood test ascertains which thyroid disease you have and this should have been run from that very first blood test you had taken at the surgery.
Just post everything back up on here, including the ranges, and it will all be explained to you as it is a very confusing time and I just hope your symptoms have now eased a bit.
P.S. You might like to start reading up and suggest you go to the Thyroid UK website which is the charity who support this amazing forum : there are various sections and also just reading other peoples posts on here helps " things " fall into place, as initially it's all a bit daunting.
Hi, I know there is an alternative drug that can be used. The doctor is calling me this afternoon to discuss possible rash reasons. I will find out my results and maybe they will make things a bit clearer. I would hate to be taking meds unnecessarily and need to know that they are beneficial and needed. Appreciate your help on this and feel a little more confident in asking questions regarding my diagnosis 👍🏼😊
My only symptom of something was wrong was that my ankles swelled up in the first week of January and my legs were very weak. Had never had ankle swelling for any reason. Since beginning Carbimazole my ankles are about back to normal and my legs are much stronger. I developed a tremor during diagnosis, Cutlery and mascara were tricky 😂 but the shaking seems to have subsided now. My weight has dropped in the last month, I would rather not lose any more 😊
I was diagnosed from the blood test result, taken the previous day and called at work the following day to return to see the doctor same day.
The doctor said I had Graves Disease and asked to hold my hands - he then recognised the clinical symptoms of sweaty warm hands and a fine tremor in the middle finger.
I went to the doctor with exhaustion, insomnia and dry gritty eyes - interesting how we all seem to show different symptoms.
The anti thyroid drug should be blocking your own thyroid hormone production so your symptoms shouldn't get any worse, and start to reduce.
Your metabolism, is in reality, now out of your control as the AT drug has over ridden your own body and your own thyroid hormone production.
This should also apply to your weight loss - your metabolism is running too fast, you are loosing weight though maybe eating for 5 - with an increased appetite and possibly a looser than normal bowel - this too will calm down.
When your metabolism is running too fast or in fact too slow you may well have weight issues : hyperactivity generally = weight loss whereas a slow metabolism is generally associated with hypothyroidism and a weight increase.
During this phase it's essential to keep your core strength strong and solid and when your metabolism isn't " spot on " it's harder for your body to extract all the essential nutrients it needs from your food, so it's a good idea to maintain your ferritin, folate, B12 and vitamin D at optimal levels to support you through this period.
Hi your symptoms sound horrible. Can’t say I had any problems except the swollen ankles, weak legs and then a tremor. Although I did have a couple of panic attacks shortly after starting Carbimazole, never had anything like that before. No heart racing, sweaty palms, night sweats or anything. I haven’t slept well for near on 20 years so can’t say that sleeplessness is new to me and a possible symptom.
My appetite has not increased at all, eating same quantity I always have. Should I be taking vitamin supplements, I never have because I have a very varied healthy diet and never felt the need. Don’t really want to start supplement at the moment as I have not had my first blood test after starting Carbimazole so don’t want to mess with any readings. I know some supplements are not advisable with medication 🤔
Well, just see how you go - yes Biotin used in some supplements can distort some blood test readings depending on the assay used at the laboratory :
No worries - let's just see exactly what you have been diagnosed with first and then we know what we are dealing with and it will all start to make sense.
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