Hi everyone I was diagnosed with Graves in May 2020 when my heart rate was over 150 for 3 days and went to A&E. My blood results were TSH - 0.01 and my T4 - 42.2 therefore showing hyperthyroidism. I was prescribed carbimazole 20mg a day, but in August my blood test came back showing TSH - 46.99 and T4 - 5.6 and that I had become hypoth. I was told to come off carbimazole but then went hyper again in September, so went back on 10mg carbimazole a day, started going hypoth again in October and went on 5mg carbimazole every other day.
But now I’m hyper again and on 20mg carbimazole but I’m become really constipated and generally feeling unwell. My endo has said that I’m just really sensitive to carbimazole and we have to keep trying to work out the right dosage.
I wanted to ask if there is an alternative to carbimazole or is there anything else I could do or take to help? Thank you x
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It’s possible to have both Hashimoto’s and Graves’ disease at the same time
If you do, then endocrinologist would likely prescribe block and replace....block with Carbimazole and replace with levothyroxine
What test results have you got
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 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 Hashimoto’s and Graves
Ask Endo 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). But these can be slightly raised due to Graves’ disease too
Thanks Slowdragon. I’ve just ordered a test from medichecks and will see how that goes. I did ask my GP for vitamin checks but was told it wasn’t necessary
Ive noticed most ( not all) GPs just go strictly according to the protocol and even see testing for vitamins and regular blood checks as unnecessary use of the HS resources.
It's a question of finding a GP who will go extra mile for you or test privately.
Hi Slowdragon. Any thoughts on my results? I got my medichecks test result back and my vitamin and iron levels came back fine and within range. But my thyroid levels were:
TSH 0.005
T3 7.68
T4 23.6
Thyroid peroxidase 42.4
Thyroglobulin 10.4
So still hyper but slowing dropping. My doctor has also prescribed laxido as I’m still constipated, I’m having flu type symptoms with aching joints and headaches at the moment so I’m just seeing how it goes and if it gets worse will contact the doctor again. My Endo has just changed my appointment to May as well, which means I won’t have seen him for 5 months. Thanks
TSI & or TRab should be tested is Graves suspected. Doctors often treat all low TSH as Graves without confirming cause.
20mg is a moderate dose some start at 60mg. Were your levels checked after 6 weeks. Allowing you TSH to rise to nearly 47 is very poor care. Were you not checked for 3 month?
Your endo might be dosing you by TSH which can lag behind the ft4 & ft3 causing your levels to drop too low.
If you are sensitive to carbimazole then the dose should be adjusted accordingly. I think what is happening is your levels are fluctuating unexpected (you may have hyper from autoimmune thyroiditis or Hashimotos) and you might do better on block and replace regimen. Higher dose of carbimazole ( to block the thyroid completely and replacement levo to control the level)
Stopping carbimazole so soon would not have helped of you were close to remission a very low maintenance dose of might have helped keep you stable. (Assuming you do have Graves)
There is an alternative anti thyroid (PTU) but carbimazole is first option as considered safer unless allergic to carbimazole or 1st trimester pregnant. Carbimazole doesn’t impact on conversion of FT4 to FT3 where as PTU does. Which can be useful when hyper.
Were you offered propranolol to help with symptoms. This also has an mild anti thyroid action.
Apart from anti thyroid medication the other options Endocrinologist recommend are to permanently disable the thyroid. By way of surgery or Radio active iodine. This was suggested to me at my first appointment but these option likely leave you lifelong hypothyroid and this can be as difficult to manage & more difficult that primary hypothyroidism. Specialist pass you to GP to manage once hypo, they deem it easy to treat.
Also important to test B12, vitamin D, folate & ferritin. Often low when hyper or hypo.
Thanks purplenails, your response is very helpful. All the changes to my dosage were made by my GP, but they did refer it to my Endo for confirmation. Conveniently I have just received a letter from my Endo with my next appointment and saying I have thyrotoxicosis but doesn’t mention Graves. Is this different?
I see my Endo every 3 months, but when I have been feeling particularly unwell then I’ve gone to see my GP and then they give me a blood test. When I went hypo, I was feeling sleepy and fuzzy all the time. I would have tingling in my fingers.
I did take propranolol to begin with but started to feel depressed and moody, and so my GP told me I could stop taking it
Did you collect your blood test results each time?
If you don’t already you might find it helpful to start keeping a diary of your symptoms, medications and any supplements you take. Make notes of things you plan to discuss with your doctor and get into habit of obtaining test results to keep track of your levels. learning how to understand them and how medication is affecting them will help be your own advocate.
Hi. SlowDragon has offered great advice. PTU is an alternative drug to carbimazole. You could post a question on elainemoore.com. Elaine is a Graves’ disease dedicated website. Antibody testing is crucial. Getting all of them tested will give a clearer picture as well. Vitamin testing is also needed.
Hi Tromashka of course I don’t mind. We are in it together 😊 This website has been really helpful. Yes my Endo agreed to all the changes in my dosage, and yes I was told to stop my medication when my TSH went to 46.99. I’ve ordered a private test so will see how that goes. Good luck on your journey too
Hello, I have graves disease and was oficially diagnosed in september 2018.I started on 40mg of carbimazole per day.My t4 was 57 when diagnosed and should have been between 10 and 18.7.My endo tried the titration method first but I kept yo-yoing up and down.My t4 was 23.8 at the beginning of oct2018 then was 9 in Dec 2018.He therefore lowered my carbimazole to 20mg.By June 2019 t4 had crept up to 29.4 so I was back on 40mg carbimazole.By Nov 2019 my t4 was down to 10.I had been diagnosed with thyroid eye disease by this time and this was exacerbated my constant fluctuations in my levels.My endo decided to try block and replace on Dec 19th 2019 and I have been better on that.I ended up on 40mg of carbimazole and 100mcg thyroxine which was good for me.It took till March2020 to slowly increase my thyroxine to that level.However you can only stay on block and replace for so long so in september 2020 I was told to stop all tablets to see if I was in remission.Feeling unwell again I had a blood test on 13 october 2020 to find my t4 was back up to 63.I am now back on the merry go round of block and replace.Still only on 50mcg of levothyroxine.Looking back my endo appointments were too far apart to successfully manage titration and why did I go from 40 to 20 carbimazole, what about 25, 30 mcg.Tweaking more subtly may have been more effective.Of course I can say that now with what I've learned along the way but here I am again waiting by the phone when I had a blood test on 22 march knowing I need an increase of levo but having to wait in line.So frustrating but what can you do if you csnnot afford to go private.Sorry for long post but it may help you in some way.
Cavapoochonowner, re: tweaking the dosage by 25,30 mg... I suggested doing that to my endo . As ive been on 40 mg when my T4 was 47. And now its down to 26 ( range 10-22). I suggested going down to 30 and down by 10-5mg each month. My suggestions were ignored. I was told to keep taking 40 mg and then down to 20. Do they know something better but not telling the patients 😂?
I know , so frustrating.I've sat by the phone again all day today, no phone call.I'll give him while friday then I'll telephone his secretary again.I know he has other patients, but a 5 minute phone call surely isn't much to ask.Best wishes to you.
Hey tromashka. I’m ok thanks. I got my medichecks test result back yesterday and my vitamin and iron levels came back fine and within range. But my thyroid levels were:
TSH 0.005
T3 7.68
T4 23.6
Thyroid peroxidase 42.4
Thyroglobulin 10.4
So still hyper but slowing dropping. My doctor has also prescribed laxido as I’m still constipated, I’m having flu type symptoms with aching joints and headaches at the moment so I’m just seeing how it goes and if it gets worse will contact the doctor again. My Endo has just changed my appointment to May as well, which means I won’t have seen him for 5 months!
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