Please can I have your thoughts

Hi I went to the endo today I have graves my doctor last week did so called thyroid test last week but only did tsh not. Lot of good any way she called me confidently stating that thyroid was normal tsh 3.1 range 0.3-3.94

I did point out to her that with graves you needed to test at least ft4 and ft3 she told me to cut carbs I'm on 5mg a day

However as I was going to endo today I decided to ignore her and carry on until I saw endo the thing is I was diagnosed in July and although I have much improved since then as i was trembling from top to toe no sleep spent most of my time in loo and unable to walk or climb stairs

I have not had one day that I have felt well the symptoms fluctuate from day to day and sometimes am to pm stiff legs hot hands and feet with prickling periodict spells of weeing all the time all the symptoms are intermiitent

Any way I'm rambling

Saw endos locame she was very nice she agreed that there was no way of knowing what was going on without t4 and t3 so she did them today she also said not to cut carb as she thinks symptoms are that it has been dropped to quickly

What she said next kind of makes sense that your thyroid hormones fluctuate through out the day and as my throiyd levels have not stablised yet I will be feeling symptoms as the go up and down and it may be that one day I'm under next over and once they have stablised symptons should settle

She also said she thought there was a chance I have 2 autoimmune Problems but they need to sought this out first to see what symptoms I'm left with I asked for my b12 to be tested again as they said it was ok last time she gave me another blood form for 3 months time to insure I get the right tsh tests and added b12 vitimin d and surprisingly celiac

Sorry for long post but I get a bit tounge tied at hospital and had to go on my own. This time

3 Replies

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  • Sounds like you did ok on your own. Well done. Good that your endo has now tested T3 and T4. I've got Graves but was treated with block and replace so I don't know much about taking carb only. Your endo sounds good in that she is testing for Vit D ( had to pay for that myself) and B12 not to mention coeliac.

    I went right through the ranges in the beginning from TSH<0.03 lowest they could test - to 7.4 when I had been on a legend dose of carb only for too long and became hypo before I started taking thyroxine as well as the carb and I know I felt truly awful when my TSH was above 1 - so I know I wouldn't feel good at your 3.1.

    Your endo sounds ok - stick with it and hopefully one day you will realise you feel ok. It's a hard journey Graves, people don't realise how ill you are and how lousy you feel.

  • Thanks for your feedback I really thought ok they will give me a pill and I will be back to normal did not think it would be overnight but was not prepared for this roller coaster at its worst my tsh was 0.1 and has been up to 8.66 I actually had symptoms I could cope with then stiff legs painfull hips but at least I slept

    My husband bless him bought a memory foam mattress to see if it help only problem is need to be in it long enough for it to rember me lol

  • You've had the same sort of roller coaster ride I had, from reall low to quite high, makes your body feel awful. When that happened to me I remember my endo asking how I felt and before I could get the words out she said 'I bet you feel terrible' and went on to explain that it was because I had gone from being very hyper to being very hypo in such a short time. By that time my hair was falling out all over the place and I was feeling frantic about that. Once I was stabilised it was pretty much ok again.

    Sadly there is not one little pill. Well I was told if I relapse again I can have RAI which is 'one little pill' according to the trainee endo I saw. I've told them I definitely don't want RAI then I checked with my GP who said I can't be made to have it and I can't be refused treatment if I refuse it so fingers crossed. Good luck, you might not feel it but you will get there in the end.

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