Hey, I recently developed a lump of my thyroid gland shortly before starting carbimazol, my GP confirmed this issue & contacted my endocrinologist who has not responded,
I was wondering if it’ll go away once my medication starts working or am I supposed to do something about it?
Hello & welcome to the thyroid forum
How long have you been taking carbimazole? And what dose?
What symptoms did / do you have? Have they improved or changed at all?
Your GP needs a specialists agreement & guidance to start carbimazole and advice about what dose/s you should be given. You also need referral to a specialist to determine the cause of your hyper.
What tests have you had to establish the cause of you hyperthyroidism? Thyroid antibody testing. Ultrasound of thyroid? Uptake scan?
You also need frequent testing of your TSH & thyroid levels FT4 & FT3 as your carbimazole dose will need to be adjusted to prevent your levels remaining too high or becoming too low. 6 weekly is standard until stable. Has this been scheduled? What have your results been like?
Thyroid lumps, nodules & swelling are common even in people without thyroid dis-function so It may be not be connected. Or it may be the sole source of the hyper levels. I have a hyper functioning (hot / toxic) solitary nodule a 5cm swelling to one side of my thyroid. My nodule did not reduce in size or stop overproducing. I have now been on carbimazole for over 2 and half years.
The other reason for overactive levels is Autoimmune. Thyroiditis can cause transient hyper levels but ultimately the Autoimmune attacks leave the thyroid under active. Graves causes continuous hyper and needs carbimazole treatment with the aim that the condition goes into remission. Nodules are common with both conditions. This is why antibody testing and finding the cause is important.
Carbimazole doesn’t treat the underlying thyroid issue, whatever the cause. Carbimazole works by prevents production of new thyroid hormones. It’s doesn’t affect existing levels, the body has to metabolise existing stores and your doctor must help you find the right balance to keep you stable.
Thanks for all the info! I’ve just started seeing an endocrinologist after abnormal TSH , T3 & T4 results & was diagnosed with Graves’ disease & started a 20mg dose of carbizmazol, it’s been hard to figure out which symptoms are linked to this or my connective tissue disease other than a fast heart rate which has not improved so far, hopefully I can get a scan sorted soon to figure out where we’re at.
Hi. Do u have any copies of your blood tests for TSH, T4 and T3? How long have u been on the carbimazole and when do u next see your specialist or have your next blood test? It can take 4-6 weeks to see symptoms go and it takes that time for the body to use the excess T4 and T3. I have Graves confirmed by antibodies TSI, TPO and TRAB.
Do ensure that your Graves diagnosis is confirmed by positive Trab or TSI. TGab and TPO antibodies which are often tested first can be present for both autoimmune conditions - Graves & thyroiditis (Hashimotos) . Medics often see low TSH and high FT4 & FT3 and treat all hyper as Graves without confirming.
At diagnosis my TSH was suppressed (found out later it had been for over 4 years) and my FT4 was a little over range, my FT3 was nearing double the norm. With Graves it’s typically much higher eg 3 or 4 times the normal range.
I was started on 20mg, higher levels start on 40mg up to 60mg if very high. Within 2 months my levels were in lower part of range & dose was halved. I think you need to get a hold of your results so we can help explain what they mean.
Does your practice offer online access? Very useful if available if not obtain printouts of your results via reception (don’t ask doctor) & don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist providing just say they are “for your records”. You are legally entitled to them.
From the sounds of it they have began treatment for your levels but not addressed the lump/swelling. This needs to be investigated & it may be done separately eg by ENT and not by your endocrinologist. If you have any swallowing, breathing or voice issue keep reporting it.
I had an ultrasound and fine need aspiration before my over range levels came to light.
Are you aware to be vigilant for potential serious side affects from carbimazole use and to have a full blood count arranged if you develop sore throat, mouth ulcers, unusual bruising? Also to be aware of eye issues which are associated with Graves’ disease?
Make sure you read the information leaflet which would have been dispensed with the medication.
Do you take 1 daily dose or 2. It may be beneficial to split the daily dose at least for the first few months until stable.
Please add most recent results and ranges
You need to know if you have had all thyroid antibodies tested
Have you had TSI or Trab antibodies tested
Have you had ultrasound scan of thyroid to see if cause is hot nodule
You are legally entitled to printed copies of your blood test results and ranges.
Bloods should be retested roughly 6-8 weeks
For full Thyroid evaluation you need TSH, FT4 and FT3
plus both TPO and TG thyroid antibodies tested (for Hashimoto’s)
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) or with Graves’ disease
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)
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Graves Disease antibodies test
medichecks.com/products/tsh...
Good info on Graves’ disease
ncbi.nlm.nih.gov/pmc/articl...
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms, so needs ruling outb
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). But can be mildly raised with Graves’ disease
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
I would get your GP to chase the endo. I had a lump on my thyroid, but my results were as normal as could be. There was no endo at the local hospital and my GP was content to leave the lump alone, but it was quite big. Long story short, after several tests, it came back as an encapsulated tumour and I had surgery. Your nodule is probably nothing, but please keep pushing until that is confirmed.
I have Graves and had a pea sized lump visible on my thyroid which disappeared after starting Carbimazole. I had an ultrasound scan and Ra uptake scan which showed it was not a hot nodule or a tumour. Like others have said you need to have more investigations and the correct antibody tests to confirm Graves if these have not already been carried out.
Come back with new post once you get hold of your results
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