graves disease

[suzie2004]

my thyroid has gone from overactive to underactive but my doctor is keeping me on 10mgs carbimazole & 40 mgs propranolol. Why is what I would like to know?

[greygoose]

Probably because he has no idea what he's doing.

When you say 'over-active', what exactly do you mean? Suppressed TSH with well over-range Frees? Or just a low TSH? Were any antibodies tested?

[suzie2004 in reply to greygoose]

They done a scan when it was over active said it was graves disease done tests for antibodies etc and put me on 40mgs carbimazole & 80gms propranolol. When the endocrinologist sent a letter 2 months later to reduce meds my gp read letter wrong and did not reduce my meds now its underactive & and feel awful again. Should I stay on reduced meds or come off them. Sorry I have not much information I didn't realise the thyroid could make you feel so ill. I have complained for years about the same symtoms but always told every year my bloods were fine

[greygoose in reply to suzie2004]

I would suggest that your next step should be to get copies of your blood test results, from and including, the time you were diagnosed. You need to know exactly what was tested and exactly what the results were. If you live in the UK, it is your legal right to have copies. Then, you can post them on here, and people will be better able to answer your questions.

Thyroid can make you terribly ill. It's a pity that doctors don't realise that, either. So, I would suggest that you go back to your doctor and get him to reread that letter from your endo, and act on it! Never ever take your doctor's word for things being 'fine'. That is just his opinion, and doctors are notorious for getting things wrong. Always get copies of results to see for yourself.

[suzie2004 in reply to greygoose]

Thank You I am learning a lot since I joined this group and will get copies of all my tests which have been done over the last 5 months. You are right I feel as if my voice has not been heard for years and I need to speak up until they listen to what I have been telling them for years. Thank You so much

[greygoose in reply to suzie2004]

You're welcome.

[Valarian in reply to suzie2004]

Hi Suzie2004.

I have Graves, it's a nightmare, and even when the endo and GP are on top of what needs to be done, it can take a while to work out optimum dosage. For the best chance of achieving remission, you will need to take the carbi for quite a while - probably 12-18 months from the first prescription, although your dose may be reduced over time. The aim is to see whether your Graves will go into remission (unfortunately, it is remission rather than cure) and your thyroid will start behaving itself again.

It would be helpful to see your recent blood tests, including the ranges and antibody results. hopefully including TSI (as Greygoose says, it's not unknown for doctors to misdiagnose !), but from what you say, you were diagnosed with Graves somewhere between two and five months ago, started out on 40mg carbimazole, and are now down to 10mg. The first step is to get your thyroid levels back within range - you should have had both FT3 and FT4 checked, because they may not both come down at the same rate. Since you probably only have blood tests every 6-8 weeks, it's not uncommon to overshoot and end up below range. Now that you are within/below range, the endo will probably continue to 'titrate' (reduce) the carbi, until you are down to 5mg, or possibly 2.5 - this is known as the 'titration' approach. There is another regime, known as 'block and replace', where the carbi dose is kept high throughout, with the addition of levothyroxine to replace your natural thyroid hormones. There are pros and cons to both, but apparently no real difference in final outcomes.

Titration can be a bit hit and miss at first - I swung from being below range at one appointment to back over again at the next - so the carbi dose may need to be brought down in quite small stages. I'm currently on 20mg, having started out on 40mg in June - I did go down to 10mg for a while, but that was a step too far, too soon. In general, being underactive is less of a strain on the body than being overactive, plus they want to keep your thyroid in check, so it may be your endo thinks it's too soon to go down to 5mg, and is waiting to see if things stabilise on your current dose. Have you asked them to explain ?

Carbimazole suppresses production of thyroid hormones, so hopefully, when your dose is reduced, your levels will start to come back within range pretty quickly - if you are still below range, it's almost certainly because you are over-medicated on carbi rather than truly hypo. If your symptoms continue to get worse, you could ask for the next blood test to be brought forward. It's worth getting to understand the difference between how you feel when you are over range as opposed to under - that way, you will be in a stronger position to argue for your tests to be brought forward or your dose amended if you think the dose has overshot the ranges.

Unless there is another reason for prescribing a beta blocker, the main purpose of the propranolol will have been to take the edge off your symptoms (eg anxiety, tremors, palpitations...) until the carbi kicked in, so I don't think it's surprising the dose has been reduced. I was prescribed something else myself, but others will be able to comment. You may be able to come off it altogether.

By the way, did you get the lecture on sore throats and carbimazole ? endobible.com/investigation...

[suzie2004 in reply to Valarian]

Hi Valarian thanks for the reply and yes I did get the lecture on sore throats etc. Why do I still need to take 10mgs carbimazole when I am now underactive thyroid I do not understand that

[Valarian in reply to suzie2004]

The recommended length of therapy with carbimazole on titration therapy is 12-18 months - it's been prescribed for many years, so there is quite a bit of research, and they've worked out that this duration is optimum for getting the thyroid properly controlled, and having the best chance of avoiding a relapse. There is a bit about it in this article ncbi.nlm.nih.gov/pmc/articl.... The duration of therapy may be shorter on the Block and Replace regime, but the dosage remains high throughout, which appears to increase the likelihood of side-effects.

You said you were on the 40mg for longer than the endo intended - presumably that helped put your figures below range, which isn't quite the same as saying your thyroid is actually underactive, as its productivity is being suppressed by the carbimazole - at this stage, without the carbimazole, there is a chance it would go on the rampage again ! There is always a bit of trial and error involved, but it looks as though the endo thinks that on the reduced dose of 10mg, your thyroid will still be sufficiently active to bring your levels back into range. Depending on how quickly this happens, they may keep you on the same dose at your next appointment, or reduce it further.

Do you actually see your endo every couple of months, or is all the interaction via your GP ? You'll have gathered from other posts that endos can be a mixed bunch, as many of them are more interested in diabetes than the thyroid, but I still think it's worth asking your endo to explain their rationale. I had a similar question when they raised my dose at a recent appointment, but the endo showed me the graph of my FT3 and FT4 levels, and it all made sense.

All of this presupposes that you do actually have Graves. This may seem a silly point to make, but as Greygoose said below, there have been a number of posts here where Graves has been diagnosed simply on the basis of thyroid levels, whereas the posters had another autoimmune disease which is predominantly hypOthyroid, with occasional hypERthyroid 'flares'. Obviously, it's up to you whether you post your results here or not, but as you appear to have quite a set, I suggest you at least check that at some point, you had a test showing (very) elevated TSI antibodies. This will confirm that you do indeed have Graves. You may also have other positive antibodies, eg TPO. If this is the case, I suggest you post them with the thyroid levels from the same test, and your most recent levels so that someone can interpret them for you.

[suzie2004 in reply to Valarian]

Thanks for all the information I am finding it all very hard to understand it . I see endoc every 3 months which should be beginning January but because my GP didn't read the letter properly from endoc and didn't reduce the carbi middle of November my GP said I am now under and got to go and get bloods done again 25th January and see what happens on 10mgs carbi before I see the endocrinologist. Its a right mix up and I must admit I am furious through no fault of my own that I feel so ill. It doesn't give me much trust or faith in the professionals

[suzie2004 in reply to greygoose]

meant to say it was thyrotoxicosis sorry about spelling my memory is zero spelling etc which I was always really good with til the last 4 years

[greygoose in reply to suzie2004]

It would still be a good idea to get your results and post them here. It's not unknown for doctors to mis-diagnose thyrotoxicosis!

[suzie2004 in reply to greygoose]

Thank you greygoose for all your help & advice its much appreciated