Coming off carbimazole
I have been told to stop carbimazole as I don't need it anymore and it causes all sorts of other issues. When I stop it the lump in my throat swells so much I struggle with air and panic. Endo. Wants me to stop then call 999 to get sorted 🙄 I don't want to do this. Anyone else had issues coming off or any advice PLEASE
Can you add a bit more background?
What is your carbimazole dose? Are you on block-and-replace and also taking levothyroxine?
Have you got a confirmed diagnosis of Graves disease? Or something else?
How long have you been taking carbimazole?
Are you stopping suddenly - full dose one day, none the next?
I really cannot understand how anyone can know, beyond doubt, that you do not need it until you come off it. The evidence might well be that you do not need as much and, after suitable tapering of dose, you might be shown not to need it. But that is something which needs to be done carefully.
If you have many other issues from the carbimazole, has anyone ever considered prescribing you propylthiouracil (PTU) - another anti-thyroid medicine?
Has anyone ever done an ultrasound or other imaging of you neck/throat?
I have been taking carbimazole for 18 months and because of covid have never seen any specialist, they keep cancelling my phone appointments. All been done through GP. I have been brought down to 5mg every other day but sometimes I have to take everyday as my throat swells if I don't. It is obvious that carbimazole is keeping the swelling controlled. My bloods say all but T3 are back to normal. No proper diagnosis for anything. I am very frustrated with the whole thing. GP doesn't want to get involved and specialist doesn't seem bothered. I am up at night panicking when I can't breathe.
I requested a different med due to issues with carbimazole and thats what started this 'come off altogether, you don't need it'
Something is not right but I feel like I have to go and find it myself. Sorry ranting on now. I am so stressed.
In my experience the endos are mainly interested in blood hormone levels not the actual gland itself.I have a throat that swells. My endo has finally told me without ever seeing me that it is not thyroid and to get referred to ENT.
A kind GP then explained to me that endos look at hormones, ent look at the physical throat and do surgery
I would ask for a referral to ENT.
That is the route I'm now taking after 2 years of getting nowhere with endos.
Strongly recommend getting full thyroid and vitamin testing done
What test results have you got from diagnosis and subsequent testing
Please add any results and ranges
if not got copies will need to get hold of them.
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.
Link re access
healthunlocked.com/thyroidu...
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
For full Thyroid evaluation you need TSH, FT4 and FT3 plus
TSI or Trab antibodies tested to confirm Graves’ disease (autoimmune hyperthyroid)
TSI or Trab antibodies should be tested BEFORE starting Carbimazole
both TPO and TG thyroid antibodies tested for Hashimoto’s disease (autoimmune HYPOTHYROID)
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid. And can be misdiagnosed as Graves’ disease is all antibodies aren’t tested
Carbimazole is not correct treatment for Hashimoto’s
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, with both Graves and Hashimoto’s
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)
Is this how you do your tests?
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
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Graves Disease antibodies test
Hello Squid and welcome to the forum :
What symptoms were you experiencing that took you to the doctors ?
Do you have your original blood test results and ranges and remember what you were told you were dealing with and why you needed to take the Carbimazole ?
If it were Graves Disease - which I have - it's said to be life threatening if not medicated - so I doubt you would have been told now, that you don't need this AT medication.
It could be another thyroid AI disease called Hashimoto's which initially presents in the same way with similar symptoms bit which isn't treated with an AT drug, like Carbimazole.
The only way to tell these two AI diseases apart is by an antibody test as Graves has the unique antibodies expressed as either a TSI ( a thyroid stimulating ) or a TR a ( a thyroid receptor blocking ) antibody : so do you have any paper work mentioning antibodies ?
As for the Carbimazole, you could cut your remaining tablets into half and take the same amount everyday.
Any more information you have would greatly help us understand and advise you better.
Stopping carbimazole, will overactive thyroid come back?
Coming off block and replace
Coming off Sertraline
Coming off omeprazole 
Coming off Levothyroxine?
