hyper thyroid and can't lose weight

Hi jan.h, before I started with Graves/Hyper I was an ok weight but couldn't afford to be any less, however, by the time I was diagnosed I'd lost 1.5 stones taking me to just under 7 stones (positively skeletal - especially at my age 59 at the time - just makes you look older !).  Since being on 40 mgs Carbimazole and 100 micrograms of Levothyroxine I've only managed to gain about 6 lbs (not enough) and I've been stuck at that since being diagnosed 2.5 years ago.  I too have also had issues with anxiety/palpitations/breathlessness especially at night but also when I am going out whether that be just to the supermarket or a social event.  I discussed this with my GP and I suggested to her that I thought it could be due to over medication of the Levothyroxine or the fact that these symptoms were part and parcel of the condition itself !  She, however, decided that I should have "therapy" despite me arguing the fact that I had NO anxiety issues PRIOR to having Hyperthyroidism/Graves disease.  I had hoped that she could/would prescribe something to help with the anxiety as many patients on here have.  Anyway, I agreed to have counselling, a 12 week course of speaking to a mental health therapist once a week for 45 minutes.  Half way through the course, I was discharged because the therapist realised that it was in fact my condition AND medication that was causing my anxiety problems - we decided that I was being over-medicated with the thyroxine - the therapist read that one of the side effects from taking Levo was heart palpitations which in itself was causing me to get anxious and breathless !!  Just a couple of weeks into the therapy I reduced my Levo from 100 micrograms per day to 75 micrograms every other day and within a couple of weeks the anxiety etc had almost disappeared completely.  I see my Endo on 4th April and I have kept a diary since the start of the therapy and I'm looking forward to hearing what he has to say because I have never felt particularly well since being on both Carb and Levo and have a feeling that Levo just isn't for me (I have read that there are many patients who don't do well on Levo).  I am hoping the Endo will stop the Levo and try me on the Carbimazole titration treatment instead of the Block and Replace treatment that I have been on for nearly 2 years and not yet had remission.

Like you and many many others, I also feel alone sometimes because apart from the extreme weight loss, people just don't understand what we are going through !  I'm sure they get fed up of hearing about it but it causes so many problems with all its symptoms and we just aren't the people we used to be.  I cannot believe how much my life has changed - sometimes I feel as though I don't actually have much of a life !  I can't do the housework like I could before, my social life is getting less and less a) because I feel "safer" at home and b) I hate the way I look now !  My daughters say I'm crazy too !!  My husband does his best to help but  they only have a little idea of how bad it is.

Here's hoping we all improve even if they are small steps towards it.

Take care

Christine

Hi Christine,

I find it interesting that the Block and Replace method is mainly used in the UK and not in North America.  It's the same disease in both countries.  For myself, I was diagnosed relatively early in my disease course so I only required 10 mg of Methimazole (same as Carbimazole in England) but though that normalized my thyroid hormones (FT3 and FT4) my TSH would not rise until I added the supplements (L-Carnitine, vitamin D3, magnesium and Acetyl-l-Carnitine).  That has really helped my disease go into remission.  The only thing that is similar to Block and Replace here is something called "Add back therapy" first used at the Cleveland Clinic where they use very low doses of methimazole and levothyroxine to help people get into remission and stay there.  Usually this is done though when your thyroid levels are low enough to institute this and it is not the usual treatment pattern by most docs.

Hi Linda,

yes, I think I drew the short straw regarding receiving the Block & Replace treatment rather than the Carbimazole Titration treatment which many others in the UK receive including many patients in the same area as myself.  Obviously depends which Endo you are referred to.  After I recently lowered my dose of Levo from 100 mcgs to 75 mcgs and take that every other day instead of every day, I had a blood test which showed my TSH was 0.95 (0.34 - 5.6)  and FT3 of 5.31 (3.0 - 5.0) so just over but both the best it has been since May 2014.  The blood test prior to the latest good one showed TSH of 6.42 in October 2015.  Unfortunately the testing isn't consistent in that sometimes FT3 and FT4 are not tested at all, just TSH.  As I explained to you in another post I am only taking Vit D (large dose for 8 weeks and then maintenance dose for life) as all other results were ok.  When I remember I also take a slow release Vit C tablet as this is recommended when you are taking Carbimazole.  I'm looking forward to seeing my Endo on 4th April, I have kept a daily diary of how I have been feeling and I'm hopeful he will agree to me stopping the Levo completely and trying Carbimazole Titration.  The last 2 appointments made for December were cancelled due to him being ill.  The previous appointment in October I was seen by one of my Endos colleagues who was pushing me to have RAI, well trying to scare me into having RAI by telling me that Carbimazole is a dangerous drug and 1 in 300 patients die because of the affect it has on white blood cells !!  However, I have researched this and it is documented on several sites that if Carbimazole is going to cause a white blood cell problem, this will happen within the first 3 months of taking Carbimazole !  I have been taking it for 2.5 years and have regular WBC blood tests.  There are some patients who have been taking Carbimazole for up to 20 years.

I agree with you Christine about the safety of Carbimazole.  It seems to me that the people who have problems with it only have the problems on very high doses.  People who are on 10 mg or under don't seem to have blood count problems or liver problems with it.  My Endo told me last appointment that they no longer check WBC, especially if prior checks have been normal.