Hyperthyroid - just received confirmation I have Graves

Hello, I was diagnosed hyper in May and was taking 20mg carbo for 10 weeks ish and propranolol. Bloods showed no change in tsh, t3 & t4 so endo increased carbo dose to 40mg for 4weeks after which I've to reduce back down to 20mg (in 1weeks time).

I've just had confirmation that I have Graves, does this mean I will definitely go hypo? Also is there anything I can do in helping myself such as vitamin and mineral supplements and is there any additional blood tests I should be asking for?

Thanks so much in advance x

15 Replies

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  • The "going hypo" side of Graves is very often the result of treatment - whether temporarily by carbimazole or propylthiouracil, or more permanently after an operation and/or radio-active iodine ablation. (I say "more permanently" because it is not that uncommon for a thyroid to regenerate.)

    I don't think it is unheard of for someone to have remission from Graves without going hypothyroid.

    Rod

  • Great Rod thank you for your reply. I'm beginning to feel the benefits of the carbo and starting to see glimmers of the old me and desperately want to keep going along that route. Thats a huge relief thank you x

  • I went hypo for a bit because I was Carbimazole for too long before they added in sme levo. Once the levo started I seemed to need another raise about fur weeks after each time the endo raised my dose. I'm now on 40 mcg Carbimazole plus 75/100 mcg levo alternating every day and I was euthyroid last endo visit. I feel fine.

    I have always taken Vit C - pharmacist told me to. Take it when I started the Carbimazole, I take 1000mcg slow release + zinc, I take. CoQ10, my B12 was at the lower end of the range. I take 5000mcg Methylcobalamin and I take a spray of Vit D almost every day, I eat a couple of Brazil nuts every day - used to be more but we had a discussion about that the other day and I have cut down - I also take a one a day A-Z multivitamin pretty much every day too.

    Think that's about it - a year ago this time I was told I needed a holiday - two months later I was on my knees with Graves, I'm pretty much fine now - I think :-)

    Good luck.

    Liz x

  • Hi Liz, good to hear from you and I'm so glad your feeling fine. I think I'll definitely go back to taking my vit c. X

  • Hello Joy

    Helvella has given good information about the results of treatment for Graves. I had Graves and swung between hyper and hypo whilst on carbimazole for a year while my medication was adjusted up and down. I became permanently hypothyroid after Radio Active Iodene treatement. Since then, I have been treated quite sucessfully with thyroxine but only because I make my own judgements about what dose I need. My GP surgery is useful for supplying my prescriptions.

    To answer your questions about supplements is a little more difficult. Everyone is so different and the progress of the treatment and the condition will give rise to different symptoms and possible deficiencies. Consequently, I wouldn't take loads of supplements for the sake of it but rather listen to what your body is telling you and perhaps have some tests taken first.

    For example, I had severe cramping in just about every part of my body. Also, I have been allergic to sushine and within minutes of sun exposure would be covered in itchy red blisters. I had huge cravings for cheese but conversley couldn't tolerate salt so everything tasted too salty.

    I have learnt so much from this site that I now recognise I was low in magnesium, calcium and Vitamin D at the very least. Back then the internet was in its infancy and private testing not so easily available, so I think I suffered needlessly because the doctors were totally indifferent to what I was going through.

    In this last year, from posts on this site I realised my sun allergy could be a result of low vitamin D so I had a £25 test taken and low and behold I was deficient. I have been supplementing and the proof has been that for the first time in 30 years (of both hyer and hypo) since taking vitamin D, I now don't blister after sun exposure.

    So in summary, I would ask for tests for the most common deficiencies that seem to be prevalent in thyroid patients for example: Vitamin D, calcium, B12, folate, ferritin and a blood panel to rule out any possible aneamia. Others may post as I am sure to have missed some of them. It goes without saying it will be helpful to eat a healthy and varied diet to get the best source of natural vitamins through your food.

    Hope this helps and wishing you a speedy recovery.

  • Hi, thank you for your reply. That is so interesting that you had an allergy to the sun. Two years ago, I was exactly the same coming out in itchy red blisters apart from on my face and couldn't believe how quickly it would happen.

    My calcium was tested back in may when first diagnosed and its fine but I'll ask about the others. I've taken up juicing again so I'm hoping this will help too, they are really tasty so either way its got to be a good thing. X

  • Yes juicing is great with veg as well as fruit. I have lots of home made smoothies too - love my Magic Bullet machine for that.

    As for the sun allergy - it was miserable and made family holidays abroad a challenge for many years. How I wish I'd known abut the relationship to Vitamin D.

    Really wishing you well and just know that this site will give you so much help towards getting better as soon as possible. x

  • Although my background is entirely different to editfmrt's, I too believe I have much better sun tolerance with higher vitamin D levels. I feel very ignorant of what Graves' sufferers need so am pleased to see editfmrt in there with a few ideas.

    Rod

  • One day Rod, I will pluck up the courage to write up 'my story' for the thyroid uk website. I have spent the last thirty years making sure I put my experience behind me because I realised that anger and bitterness at my treatment would not let me move forward. That was a good decision so it's a bit difficult to raise the demons again now. Also a bit worried that it could make people worry unnecessarily as there is less reason for them to go through the same journey now there is so much more information and help available from sites like this.

  • I really do understand all that you say.

    I'd not want anyone to suffer from trying to write their experiences up.

    We do see people worrying about the experiences they read - and that worry/anxiety seems to be such an inherent part of thyroid disease. It is difficult.

  • I truly understand what you are saying editfmrt. Only when your ready, and you'll really know when, will you put pen to paper which may have a positive impact on you. I would agree on the worrying side of things for a few but as the saying goes knowledge is power.

    My mother too, which i can understand now, had horrendous experiences for over 30 years, swinging hyper/hypo, TED, thyroid storm and when I look at her many physical ailments now, i am certain some if not all are directly attributable to her thyroid. She hasnt been on any treatment for years but continues to swing and wont go to her gp as she felt 'scunnered' by it all and wants to forget it. I have been slowly giving her information learnt from this site x

  • Hi.I am in remmision from Graves.2 years in october and havnt gone Hypo yet,I feel really really good too.I take centrum multi vit and mineral tablets one a day plus a vit c 500mg per day.I am 52 so take the womans 50+ centrum.Good luck with your Journey Joy.

  • Thanks Kashka, that's great to hear x

  • Hi I am currently in remission too. Just take the carbimazole and see how you go. Good luck.

  • Thanks Greenginger, hope your doing well x

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