How to cope with Graves years after diagnosis

Hello everyone, I was diagnosed with Graves Disease in 2014. I have now been off the meds for about 2 years. However I am constantly catching infections, feeling weak and unwell, it is hard for me hold down a job as I get sick easily and it takes me a long time to overcome even a cold/flu. I really would like to know if there are any Graves Disease sufferers who have been dealing with this disease for years and if they have felt the way I have? and if they have found a way to cope.

Many thannks

10 Replies

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  • Miss cassa I have had graves for 20 yrs and had Rai 7 yrs ago, so now hypo. When I was first diagnosed I kept getting awful chest infection which would take ages to go many times I was on strong antibiotics. Couldn't really solve the problem for years, but now I don't get them anymore and this last year have had hardly a sniffle I think this is due to getting my vitamin levels up to optimal levels and take vitamin c every day

  • Dear Raventhorpe thank you for my first reply! That sounds like some good news at least. I am glad you are doing much better now, that gives me some hope. Can I ask what Vitamins you take?

  • After I had the levels for vits checked I got advice from the forum as to what dosage I should take as everyone is different in what they might be low in. I take B12 that you spray under tongue 1200 ug and B complex, and vitD which I took 5000ug daily for 8 weeks then reduced dose to maintenance, you should have vit D checked first before supplementing as too much is toxic then have it checked a couple of times a year,when taking vit D then you should also take k2 and mk7 as this directs the vit to bones, also magnesium. I also take 1000mg vit c which very good for thyroid and helps with constipation which I suffer from. I don't have to supplement iron as my levels are high but lots of people on here do as it's quite common to be low in iron although eating liver is very good to up your iron intake. Iron should also be checked before supplementing as high levels can be toxic. Seaside Susie is very good at giving advice on supplements and dosages.

  • Thank you so much that is so helpful. I am new to this online community and generally at my wits end with this disease. Feel helpless and I don't feel doctors understand it all themselves. I will have my vitamin D and Iron tested I have heard too much can be toxic. hopefully I will see some improvement!

  • When did you have your thyroid levels tested last? I have Graves, went into remission, then my levels started dropping and I have been diagnosed with Hashimoto, so now on Levo - exact opposite to how it all began!

    Agree with Vit/min deficiency, see if GP will test.

  • I was taken ill at work last week Thursday. I was worried it was my thyroid so asked the doctors to check my levels and they said the hormone that suppresses the thyroid is low but my thyroid level is 20? and the cut off point is 22? as in anything anything above this is deemed high. I didn't 100% understand, anyway they said I was fine and sent me home.

  • Thyroid problems of any kind often leave sufferers short of vitamins and minerals. In the case of hypothyroidism it is because sufferers have low stomach acid and don't absorb nutrients from food. In the case of hyperthyroidism it is because the metabolism is running so fast that nutrients get used up very quickly.

    The best thing to do is to actually test nutrients and then supplement accordingly rather than supplement blind. Some nutrients can be toxic if taken in too high a dose. On the other hand, some standard doses of supplements are so low they won't fix a deficiency.

    I'm assuming that your thyroid condition is tested annually. And I would hazard a guess that the only thing measured is your TSH, but I may well be wrong. You would know more about how your thyroid is functioning and your nutrient levels if you got a private test done, if you can afford to.

    Some people with Graves also have Hashimoto's Thyroiditis. Knowing whether or not you have Hashi's can help you to understand your symptoms.

    Private testing generally, see :

    thyroiduk.org.uk/tuk/testin...

    The most popular private tests on this forum are :

    Blue Horizon :

    bluehorizonmedicals.co.uk/T...

    bluehorizonmedicals.co.uk/W...

    Medichecks :

    medichecks.com/thyroid-func...

    medichecks.com/how-it-works

    medichecks.com/dl/Medicheck...

    Both companies above have regular special offers. If you register with both you will be notified via email about such offers.

  • Just wanted to add :

    If you do get private blood tests, once you have a copy of the results you should post them into a new post, complete with reference ranges, and ask for feedback from the members.

  • Okay yes I will definitely do this !

  • Thank you so much for all that information, I am very grateful!

    Yes my thyroid is tested annually from now on. I had my final thyroid check earlier this year I think it was in January and they said I was fine and it was likely it would not return so I just need to have the test done annually. Prior to this I was having it done every 6 months. But I just don't feel right and my moods and energy are all over the place and I am constantly getting viral infections so it is really affecting my work. When people look at me they say I look fine but they don't see the internal struggle. Doctors tell me I'm fine but after they have done a generic thyroid check, as was done last Thursday of my TSH level. These links look promising, my friends have all graciously raised some money for me to go private so I will have a look at my options. It has been over 3 years with this disease I am 28 and I just want to feel well again.

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