Graves disease

[Rosie2-2]

Hello,

I have Graves disease and saw a endo doctor last Monday, I seem to have gone round in a circle as I started with this endo a year ago and still I feel ill. One I am so fed up with doctors saying I shouldn't feel as ill as I do and am I depressed. I am on PTU my T3 and T4 are in normal range tsh is slightly low at (0.32 range 0.35 - 4.94) but antibodies are really high. I have relapsed 3 times now in the last 12 years. The PTU doesn't seem to make me feel any better. The endo referred me for RAI May this year, I still do not have an appointment and was told to chase it up which I did to be told that they have no slots and I wont be seen this year to which I burst into tears as I am so fed up with feeling like this, I feel like I have flu every day and chronic heartburn and indigestion just to name a few symptoms. My question is should feel this ill and do high antibodies make you feel ill? Thank you for any help.

[bantam12]

Hard to believe the hospital has no appts for RAI this year, it takes a few minutes to swallow the pill so hardly a long appt needed. I would call again and say you can't wait that long, if they won't help then ask to be referred to a different hospital.

[Rosie2-2 in reply to bantam12]

Thank you, I asked that today and was told by the secretary she would speak to the doctor next week and get back to me. I wonder?

[K1k1_belle]

Hi Rosie2-2 , sorry to hear you're feeling rubbish, at least people understand and will listen here!!

It's not your antibodies that are making you feel rubbish but the damage that is being caused by the antibodies.

If I was you in would look up Amy Myers, she has put her Graves into Remission. I love to hear what anyone one has successfully managed to reverse their disease has to say on the matter 👍🏼

[Rosie2-2 in reply to K1k1_belle]

Thank you so much, I am looking now.

[K1k1_belle in reply to Rosie2-2]

I hope you find it of some help 🙏🏻🙏🏻🙏🏻

[Fruitandnutcase]

It's very difficult. I felt really, really ill when my Graves was at its worst. I've been in remission for a few years now. I was taking carbimazole which is an antithyroid drug similar to your PTU. My hospital treats with 'block and replace' so I was taking 40mcg carbimazole then I worked up to 100mcg Levo along with the carb.

Once I was on the correct amount of Levo I felt good. My problem was the opposite of yours, I felt the hospital couldn't wait to give me RAI should I relapse and I really didn't want that unless it was a total last resort. I have since spoken to my GP who said I can't be forced to have RAI nor can the hospital refuse to treat me because I want to go back onto carb etc.

I decided to do everything I possibly could to help me feel better, I checked that all my vitamin levels were good - B12, vitamin D, ferritin and folates - all up at the top of their ranges. I even went totally gluten free, I eat lots of fish, chicken, vegetables. I don't snack or eat junk food even though I used to love the odd McDonalds. I've cut out sweets, cakes, biscuits etc - junk food is junk food even if it is gluten free. I stick with water, decaf tea and coffee and the odd glass of red wine - no more Diet Coke which was my favourite. I've found that my antibody count has massively reduced. One was still over what it should be but was half of what it used to be so I'm very hopeful.

I looked at Amy Myers' book and agreed with what she said but I just found some aspects of her diet a bit extreme for me, I felt that had to like the food I was eating if I was going to stick with it and I didn't think I would be able to stick to her diet so I worked out my own version.

It was hard cutting out my favourite things - I was helped in a way as I became T2 diabetic as a result of a course of steroids I was given for yet another autoimmune condition so that really focused my mind. The T2D has gone now and hopefully when I do my bloods again the antibodies will be better too.

I also found that giving up chocolate - fruit and nut was two of my five a day - cakes, biscuits, fizzy drinks - well basically sugary foods - the heartburn / reflux I was suffering from disappeared and I was able to give up the Omeprazole I wad taking every day.

Good luck and I hope you feel better soon.

[Lvcur in reply to Fruitandnutcase]

Fruit&nut, can I ask are you still taking meds eg carbimazole? I have to have a hemithyroidectory because I have a thy3 lump that has to be removed. I also have the option of having a total thyroidectomy. I don't like the sound of being hypo & was wondering if there is much chance that block & replace will work for me after my surgery if I only have hemi (I have graves and may be hyper still). Thanks

[55lindylou in reply to Fruitandnutcase]

Hi fruitandnut case

Just read your very interesting post.

I was diagnosed with Graves' disease in 2007, and was treated with carbimazole. I wasn't given an option about block and replace at the time so had RAI in 2008. Since then I have had yearly TFTs, which I have been told are within normal limits. I have just accepted this, I have not felt well at all. I have gained weight, cramping in feet and legs. Recently my neck has started to ache and it feels sometimes as if I can't swallow. I just feel rubbish no energy ext. I'm going to the Drs on Friday to have my yearly TFTs done and BP check. Reading your post has inspired me to take a more pro active approach to my health. Could you tell me what blood tests I need to have

Thank you

Lindylou