I`ve gone underactive with carbimazole - plz help with advice.

[Joyliz]

Hi there

I was diagnosed with graves disease 2 months ago. I haven`t any results from that 1st blood test but my GP said I was extremely over-active. With hindsight I`ve not been well for 2 years and think this could all have been down to my thyroid. Anyway I`m 63 and a few days after being diagnosed I ended up in hospital with atrial fibluation (sp?) and put on 40mg carbimazole. After about 3 weeks I started to feel much better, had an appointment with endo who said to reduce the carbi to 20 mg because I`d reached `normal` levels. But my well feeling didn`t last and each day I felt worse, so I went for a blood test and my GP said I`d gone underactive now- he mentioned TSH 8.45, and he said to carry on with 20mg of carbimazole as my levels may right themselves- but each day I felt so ill with dizziness and terrible muscle and joint pains. So about a week ago I lowered the carbi to 10mg by my own accord and haven`t told him yet. I phoned my endo`s secretary to ask that doctor`s advice and was told to cut the carbimazole to 10 mg (so I was right to lower it.) My problem is that I know by my symptoms that I`m still underactive and my body certainly doesn`t like it!! I haven`t taken any carbimazole today as it doesn`t seem right taking something that at the moment is making my symptoms worse. I`ve not moved from my bed for 2 days and this can`t be right? I`m hoping to see my GP tomorrow but I would really welcome the advice of fellow sufferers on here. Also will I get better? This is beginning to worry me- many thanks. x

[Clutter]

Joyliz,

Ask your GP to test your thyroid function again tomorrow. If your TSH is still elevated your Carbimazole should be reduced further or stopped. Your GP can contact the endo by phone or email for advice. You may need block and replace (B&R) ie Carbimazole to regulate your hyperthyroidism plus Levothyroxine to address your hypothyroid symptoms.

[Joyliz in reply to Clutter]

Thank you so much Clutter, I`ve been thinking the same. Also a good suggestion to ask the GP to contact the Endo.

[Fruitandnutcase]

Gosh, poor you. The same sort of thing happened to me when I was first diagnosed with Graves Disease. I spent a month on 20mcg then had a blood test and my endo doubled it (by letter) for the next two months until I had my first hospital appointment. My TSH had gone from less than 0.03 to 7.0

By that time my hair was falling out, my nails had flaked and my fingernails had broken so often they had gone right down to the quicks and hurt so much I could hardly use my hands.

I was fortunate that my hospital use block and replace and so at that first appointment I was told to stop taking Carbimazole for a 'few days' - I stopped for five days in the end - but I was started right away on 50 mcg levothyroxine .

Gradually I started to feel a bit better but every time I needed an increase in levo - usually after six weeks on whatever new dose I was on - I got palpitations. First time I was given amitriptiline by my own GP until it was time to go back to the hospital ( can't take beta blockers) but after that I pretty much insisted I needed an increase in levo and that sorted things out. In the end I was on 40 mcg Carbimazole and 75/100 mcg thyroxine alternating. Then with block and replace - one day you just stop everything and see what happens.

I haven't had any experience of titrating Carbimazole though, which is what they seem to be doing with you but 20 mcg seems to be quite a large dose. Hopefully someone who has experience of that will let you know more about how it works.

You really do need to have regular blood tests and get copies of your results (with the lab ranges). That way you will eventually get to know how you feel at different TSH levels - obviously you feel awful at 8.45! I found I felt best when I was between 0.56 and 0.68. Because I had been everywhere between 0.03 and 7.0 I knew exactly where I felt best and was able to argue my case when I wanted more levo, I could say that I had felt good at a certain point and that I knew I would feel good again when I got back to that level and no, I certainly didn't want to become hyper again either (that was one reason given for not wanting to give me an increase)

Hyper is awful but I found going hypo just as bad in a different way - although first time I needed an increase, I was sure I was going hyper again until some wonderful person on here said - correctly - I was probably needing my levo increased.

My first contact with the group was to ask "Will I ever feel normal again?" And yes I do and I'm sure you will too. It might not feel it right now but keep going there really is light at the end of the tunnel.

Do you have antibodies?I knew I had thyroid antibodies as well as being very hyper but no one mentioned Graves, I found out quite by chance at the hospital. The endo I saw said something and I said "What you mean like Graves?" And he pointed at me and said "Yes, Graves, that's what you've got, Graves" I was left wondering if I hadn't brought it up would he actually have told me.

Do what clutter has said and insist on more blood tests. You really can't go on like you are.

PS - sorry to have rambled on.

[Joyliz in reply to Fruitandnutcase]

Thank you Fruitandnutcase- I love your name Apart from different treatments we`re getting your post could almost be mine. `Will I ever feel normal` - I`ve seriously wondered about that just lately but today without any carbimazole yesterday, I feel a little bit better, a little bit the old me! My body certainly doesn`t like being hypo- but like you, I don`t like hyper or hypo they`re both bad in different ways and I don`t want to go either way again. I couldn`t tolerate the beta blockers either and the same as you I found out mine was Graves by chance, the endo hasn`t mentioned antibodies to me but I did have gritty sore eyes- and I think they based the diagnosis on that. I came here to ask advice and I`m so pleased that a few people have taken the time to answer me with some really good suggestions- thanks x

[Fruitandnutcase in reply to Joyliz]

Gosh I forgot about my gritty eyes - got them too and I often get a sort of double vision / extra image effect when I read to much or watch TV although no one at the hospital I've spoken to seems to think that's a problem - they always say 'no thyroid eye disease, that's good' and I tell them my eye problems - really dry, gritty, itchy, watery, sensitive to light etc but they don't care. I think because if I don't have TED it makes it easier for them to go ahead ( they think!) with RAI should I relapse now I'm off B&R. At the moment I just use masses of preservative free dry eye drops and I hold a hot damp facecloth over them too - that feels great. Also got a thing called an eye bag that I can put in the microwave but the facecloth is just as good.

No prizes for guessing how the name came about - constantly tell myself that a bar doesn't cover my five a day.

Have you checked out your B12, vitamin D, ferritin and folates yet? My B12 was low but in range (just!) so I supplement with Jarrow's sublingual B12, I take vitamin D spray every day to make sure I am high in the range, I take CoQ10 or ubiquinol because its good for you, daily vitamin C because my pharmacist said to take it when I started on Carbimazole I take Redoxon slow release 1000mcg with zinc and I also take 5 Brazil nuts every day (I try to make sure they are not chocolate covered) for selenium. I rattle but generally I feel good

[carefulkate]

When first diagnosed in 2011 I was put on 60 mgs and felt so ill I titrated it myself and was down to 5 mgs within a couple of months I was seeing Endo and told him what I was doing but he never remembered So this time in 2014 when I knew it was back I insisted on starting with 15 mgs now with new much better Endo and he says to do what I feel my body needs so already down to 10 mgs and this bout has been much better Listen to your body and discuss with GP

Good Luck

[Joyliz in reply to carefulkate]

Thanks carefulkate- I believe you are spot on and I`m convinced now that I must listen to my body- I knew immediately that I was going hypo but my GP said to wait in case my levels adjust themselves - and I just got more ill. I`m speaking to my GP later and am going to suggest he phones my endo, and between them support me in altering my Carb myself - I`m supposed to be on 10 mg at the moment, but didn`t take any yesterday- I think 5 mg maybe better and then go from there. x

[carefulkate]

At the end I took 5 mgs alternate days then stopped and got 3 years remission took much less than they thought I would need but was supported throughout as I told them you don't know my body as well as I do x