Diagnosed with graves April 2011 levels have been all over the place since.
Am on maintenance dose of 5mg carbimazole as I won't have RAI. Consultant is happy to keep me on this. Latest results TSH 1.98 range 0.30 - 5.50. FreeT3 4.4 range 0.0- 7.0
Free T4 14.8 range 11.5-22.7.
Feel really guilty writing this but just don't feel right although consultant says results are normal. Am not enjoying life and feel sad all the time, hate myself for this as I have 2 beautiful grandchildren a lot to be thankful for. Do you Think I am depressed or is it just fall out from graves. Keep myself busy but feel as though I am just going through the motions. Any advice anyone.
Hugs to everyone out there
Ali
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ali56
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Have you heard of modified block and replace? You continue taking carbimazole to keep the Graves' antibodies in check, but also take some levothyroxine to bring your T4 levels up, since carbimazole keeps your levels purposely low. Some people have stayed on this protocol for years: tiredthyroid.com/graves.html
Unfortunately your results are within the ranges which means your GP and endo are probably quite happy with your progress - doesn't mean they are optimal for you though.
I've got Graves and was treated with block and replace. I took 40mcg carbimazole daily which totally blocked my own thyroid production then I took ever increasing doses of thyroxine until I was taking 75/100mcg levothyroxine a day. I stayed on that until I was euthyroid then all medicines were stopped at once and everyone waited to see what happened.
Gradually my TSH has crept up to about what yours is - I'm convinced I'm heading towards becoming hypo but because I'm within the range no one is interested.
In the meantime, have you had your vitamins D and B12, ferritin and floaters tested.
You want the results of all of them to be high in their ranges to feel good. I also take 1000mcg vitamin C plus zinc every day. CoQ10 or ubiquitous whichever is the best deal when I order. I use a vitamin D spray every day, take a sublingual B12 tablet, five Brazil nuts (for magnesium) and I'm working hard at being GF because I understand it helps reduce antibodies. I try to stick to a healthy diet with fruit and vegetables, fish, chicken, not too much red meat etc avoid fizzy drinks, caffeine all that sort of stuff.
I know exactly what you mean by going 'through the motions' - I was thinking that just yesterday I'm just like you, I have a lot to be thankful for - don't have the lovely grandchildren but lots of other good things, I'm pretty sure I'm not depressed yet I kind of feel my get up and go has got up and gone at the moment.
Check out your vitamins and minerals and see what they are like - then go from there. Have you kept notes of all your blood tests with comments on how you felt at the time? I know from doing that where my body felt best ( definitely NOT where I am now unfortunately even though I'm within range!)
It was my pharmacist who told me to take the vitamin C as soon as I started the carbimazole but I was already taking it after I had a tooth out and the patient information letter had that written on it - helps promote healing apparently - so I just continued to take it and all the things listed above even though I've been in remission for quite a while.
Thanks for your prompt reply, will get my vitamin d levels and ferritin bloods taken. No one in the medical field has given me any advice on which vitamins to take to support graves in fact I find them all to be dismissive of how you feel and too obsessed with levels. Have cut out sugar and am giving gluten a wide birth.
I eat a balanced diet plenty of fruit and veg.Suppose bottom line is it's all trial and error and down to me. So many conflicting theories out there on do's and don'ts were thyroid is concerned.
Will get some vitamin C. I don't touch fizzy drinks as I don't like them
Snack on Brazil nuts, almonds and walnuts downfall is tea.
You say you are in remission but sometimes feel your motivation has gone
So it must be something to do with graves as it can never be cured.
You're so right about all the endos and doctors are interested in being levels. I said that to one. She apologised about the wait and I said I didn't know why they bothered to have us all in when all they were really interested in was out blood test results. She looked at me and I said that they make their decisions based on our bloods do why not just invite the people with problems in and leave the rest as they were. So funny, she was amazed I think but I think she knew what I meant. Generally they ask how you are but I'm not sure that is anything more than a formality.
I found the same with vitamins, they tested my B12 and it was barely over the lower end of the range - endo was quite happy but my mother had pernicious anaemia so I wanted it much higher - hence the Jarrows sublingual B12. One endo I saw said he thought all this fuss about vitamin D was. Just fashionable - if I could give him any supporting evidence then he would test it for me - I was new to it all, didn't know what I know now and was speechless anyway. I've since started using. City Assays as listed on the Thyroid UK website - they are good, not too expensive and efficient.
Don't take more than five Brazil nuts a day. Too many aren't good for you.
I think you have to be kind to yourself, as much rest as you ca get and don't feel pressured to say 'yes' to people when you are saying 'no ' inside. Be a bit selfish and do what you want to not what you feel you should do or what other people think you should do.
My first post on here was 'Will I ever feel normal again?' And yes apart from feeling a bit aimless at times, I do feel normal.
If you click on my name at the top here you will find my profile and I think there is a helpful YouTube video that explains all about which vitamins help your thyroid and how. 😊
You might not feel it right now but I'm sure there will be an upwards.
I don't want RAI either. It was always being mentioned at endo appointments every time I said I didn't want it I was told things like 'It's only a little pill' endo held her thumb and finger up to show me how small the pill was 😁 That one also said 'Oh you won't become hypo' Hmm! Can't agree with that one. Spoke to my doc to find out if I could be forced to have it - No, could they refuse to treat me if I declined their offer - No. So I relaxed and concentrated on keeping relaxed and stress free.
Just watch the carbimazole to make sure you don't become hypo - too much and that can happen like it did to me although that was before my thyroxine was added and I was taking 40mcg carb a day which was a lot 😊
Hi not sure if this helps. I suffered from graves disease for nearly 3 years was on carbimazole myself so know how you feel.I was told by my consultant that it's harder to control an overactive thyroid and they don't like anyone being overactive permanently same symptoms as you.Felt drained nearly all the time.Which didn't help my mood.I did eventually have RAI. It took them so long though to decide to give it as I had and still do a lot of other conditions. Although I did end up with being underactive. I certainly felt better than I did.And only have to take 25mg of thyroxine.I know everyone's different but I'm glad I went ahead with RAI.Cos really couldn't go on feeling the way I did with it
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