6 months

Hi all I'm now 6 months after diagnosis I'm yo yo ing on my dose of levo but getting used to the symptoms and beginning to know myself when things are not right. I have now developed hypertension and am getting mouth ulcers frequently . I did have a month where I thought things were getting better but it was short lived. I am lucky in my GP takes me seriously and sympathetically I am being monitored quite well

As I've said previously I also have hyperparathyroid and this gives me high calcium levels my endo has sent me for every necessary test. I have a 2cm adenoma on one parathyroid but at present they say it is ok to sit and wait. Because the symptoms of both are similar I rely on my bloods to determine which gland is playing up

My thyroxine was started at 50 then increased to 100 next reduced to 75 and now increased to100 again I feel like I'm on a roller coaster. I know I just have to get used to it but it is hard I've joined slimming world to try to reduce my weight I know it's probably futile. But I have to try. I have tried to go gluten free but find it difficult I have started taking VIT B and VIT C so heres hoping back at endo clinic in August so will hopefully have a plan of action

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11 Replies

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  • I think, if I was you, I'd forget SW until your meds are sorted and balanced. It took me about 18mths to find a balance of T3 when I started on that some years ago (after 20 yrs failing on T4). About 3 years ago, feeling better than I ever had but still stuck with weight gained over years, I joined SW - I lost 4st in 11 months, and found it quite easy. But if you are struggling with your meds, and try to 'diet' you may find your metabolism slowing further and it becoming a vicious circle. Not saying don't do it, but be careful. I'm not sure I agree with all the aspects of SW, seem to push too many 'sweet alternatives' bit obsessed with chocolate! But if you can work around it and make it work for you...

  • Thanks I know what you mean I did 12 months before I found out about my hashimoto I only lost 10 pound even though I stuck to the plan my friends wieght was dropping off her I was gutted but did feel better when I realised it wasent me but my condition I'm not expecting much but without I'm too tempted to all the foods I shouldn't have x

  • I've stopped again now, had a lot of issues last year, stress adrenals/ metabolism slowed - was piling all wrong things into food trying to keep ailing mother going. So eating all wrong things for me - but up to that point was doing so well. But got a couple of stone to lose again now, but struggling because meds not quite right, but getting there and will go back to it.

    Good idea to be aware of limitations, and don't put too much pressure on yourself. Just the careful not to let it affect your metabolism further. Eat plenty of the right things -

    I swore by eating the berries and having some salad each day.

    Best of luck.

  • Which B are you taking and how much ? Have you had your B12 and Folate checked ?

  • No ive not had it tested but I work with a surgeon who advised me to take V B strong/compound to help absobsion and immunity I also take VIT C x

  • Does it contain all the B's ? If so then it is possible there may not be enough B12. Folate or B9 - works with B12 in the body. Any testing now will be skewed by the supplement - so needs to taken into consideration .....

  • Have you any recent bloods? Sometimes doctors aren't too good at reading them. If you could postcthem and the ranges we can may be pick up why you aren't very stable.

  • T4 11.6 ( 10-20)

    Serum THS 7.3 (0.35-5.5

    These are when I was on 75 mg now increased back to 100mg

    VIT D 38.6 following a week in the sun (50-125)

    Calcium 2.62 (2.20-2.60)

  • Well these show that you are ubder medicated. When you have been in the higher dose for 6 weeks could be helpful to post the next ones.

  • Mtraynor

    If I were you, I would not wait to see what happens. I'd get my doctor to take out the tumour that's growing on your parathyroid glands now if not sooner. And it is a simple operation. Here is a very good site and video that shows the short surgery..

    parathyroid.com/parathyroid...

    The reason I know about this, is that my husband was diagnosed with hyperparathyroidism but too late.. way too late. Too much damage had been done by the small strokes he'd had over the years.

    What it is. is because of the tumours on your gland, it fails to regulate the calcium in your blood and that's why it reads high and that means that instead of the calcium going to help your bones, it is all going into your blood stream, hence high blood calcium. Good luck....

  • Thank you so much I will speak to the endo and tell them I prefer to have it removed

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