Graves disease treatment

[markland]

Hello

My husband diagnosed with Graves about 6 months ago and has been on 20mg of carbimazole daily since then.

The results have been mixed. His cognitive function is better but his TSH levels have stayed very low (0.03) and although his T4 and T3 were beginning to drop from the original levels of 22.9 for T4 and 7.7 for T3 (September) they have now started to increase again.

In November T4 was up to 19.2 whereas in October it had been 16.5.

T3 was 6 in November but in October had been 4.7.

I am rather concerned that after 5 months on carbimazole the levels of T4 and T3 are still quite high even if within the 'normal' ranges. Concerend too that TSH levels are still so low.

The specialist said that if the next blood test didn't show improvements that he would increase the dose of carbimazole. He has been reluctant to do this because my husband has urinary problems and now has to use a catheter.

My husband also has mild anaemia and is having trouble gaining weight and has only gained 8llbs since August and is still underweight.

He has been extensively checked for any other health problems.

I am wondering if he is being given the correct treatment?

I read that Propylthiouracil (PTU) is an alternative that some people find much better than carbimazole.

I don't think that he has had his thyroid antibodies checked but don't know if this is necessary.

His vitamin D levels were found to be low some time ago and he now takes prescriptionn sypplements.

I would be grateful for any comments on the most appropriate type of treatment. My understanding is that carbimazole is usually given for 12 to 18 months in the hope that the thyroid starts working normally and that failing this surgery or a radioactive pill to knock out the thyroid is the next course of treatment.

[SlowDragon Administrator]

He needs B12, folate and ferritin tested too

How much vitamin D is he supplementing and has level been retested?

Has he tried strictly gluten free diet?

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

As others have said m has he had TSI or TRab antibodies tested to confirm Graves' disease

[markland in reply to SlowDragon]

Thanks for your comments

[Karen321]

Hi I’m 3 years into my graves journey and only just beginning to stabilise. Your husband needs to be tested for graves antibodies TRAB and also his D3 and B12 need to be at the top side of normal as we don’t absorb vitamins and minerals from our food as it travels through our systems too quickly. Under no circumstance allow any doctor to talk you into RAI or TT until you have done extensive research on the condition as you do not want to swap one set of symptoms for another. I’ll be very honest and tell you this is a marathon and not a sprint of a journey and I have yet to find one GP or Consultant that knows how to treat Graves’ disease without destroying your thyroid. Has your husband tried splitting his dose into 2 and taking 10mg every 12 hours? You can cut the 20mg pills in half and what brand is he on? I can only take the white pills from lime pharma/accord as The amdipharm brand make me poorly. This disease does not have a linear recovery pattern hormone levels see saw for many reasons such as diet, environmental and stress levels. You need to limit iodine in your diet so things like fish, dairy, eggs etc need to be limited as excess iodine makes the condition worse. Also on a bright note there are drugs on trial that if successful will ‘kill’ the antibodies and therefore ‘cure’ the disease. As others have said there are other causes for hyperthyroidism so your husband does need to know the cause so he needs the antibodies test and an ultrasound of the thyroid.

[markland in reply to Karen321]

Many thanks

[pennyannie]

Hello Markland

If your husband has been given a diagnosis of Graves Disease there must have been an blood test showing - TSI and or TRAB - Graves positive antibodies.

Graves is an autoimmune disease and as such it is for life.

The thyroid being the victim and not the cause of the problem.

Living without a thyroid can have it's own set of problems and this is a serious decision.

RAI maybe the Nhs treatment of choice but this may not be in the patient's best interest.

It's a quick fix 20 minute outpatient appointment and then discharge back to your doctor.

RAI is a toxic substance that goes through your whole body - not just your thyroid.

Surgical removal is, at least, contained to just one area of your body.

Either way - living without a thyroid has it's own set of problems for many people.

As mentioned by Karen321 there is now the possibility of a drug that will kill off the antibodies and that has to be better than killing off your thyroid.

It's a major gland and is there for a purpose.

Now there is the chance of treatment that deals with the antibodies I would try and stay on the medication and keep my options open.

In my experience there is very little understanding or acknowledgement of Graves Disease

within the Nhs. To some degree you may need to become your own doctor.

I am with Graves Disease, post RAI 2005, and now with Graves Disease, thyroid eye disease and hypothyroidism.

Elaine Moore - Graves Disease A Practical Guide is the only book I found relevant -

she is an American lady who has Graves and there is also a comprehensive website -

it is stateside though and so some of the medical protocols are different,.

[markland in reply to pennyannie]

Thanks and thanks again for the Elaine Moore info

[Fruitandnutcase]

I started on 20mcg carbimazole and after my 4 week blood test there was so little change that I got a letter from the endo I was booked to see two months later telling me to increase the dose to 40 mcg. I had two months on that with no blood tests in between and when I arrived for my first ever endo appointment I had gone from being hyper to being hypo!

I always took my carbimazole in the morning but I know some people split the dose - an endo did ask if I took it all at once - I said I did, he said that was fine and that was that.

My hospital treats with block and replace so when I saw my endo after the three months on carbimazole I was started on levothyroxine straight away and that was increased throughout my treatment. My treatment took almost exactly a year from the day I first saw my GP.

My pharmacist told me I should take high strength vitamin C at the same time as the carbimazole- so I took 1000mxg slow release vitamin C plus zinc every day after that. It wasn’t mentioned by my endo or anyone else but I was glad I took it because I kept very well - well apart from having Graves that is.

Like the others say he needs his ferritin, folates, vitamin D and B 12 to be well up in their lab ranges for his thyroid to work well. You need to ask for and keep a paper copy of his blood test results with their lab ranges and don’t settle for ‘your results are fine’ if he isn’t feeling well. They might be within their ranges but your husband isn’t at his optimal point.

Like the others say - don’t let your endo push you into RAI unless it is what you actually want.

[markland in reply to Fruitandnutcase]

Thank you for your help. Can you tell me why your hospital uses block and replace as opposed to trying a longer period on the Carbimazole? My husband has been on the Carbimazole for 5 months.

[markland]

Many thanks

[Fruitandnutcase]

I don’t know. I didn’t ask. The endo just outlined all the different ways of treating Graves including RAI and Total Thyroidectomy, then he said ‘we use block and replace which is the fast way’ and then he went on to say it takes a year! I didn’t think that was particularly fast but it obviously is.

I found it really good. Sort of takes all the guesswork out of it all. The carbimazole stops your own thyroid production and then it is replaced with thyroxine which is then built up until it is in a good place. For me it was really easy. I always think titration seems a bit like guesswork - but I’ve not had experience of that sort of treatment and people who do have think block and replace seems strange.

[markland in reply to Fruitandnutcase]

Thanks very much because now I can ask the endo about this type of treatment

[ling]

Hi there, how's your husband doing?

[tromashka]

Hello, how is your husband these days? Hope you got the proper medical help.x