Grave's Disease and Hyperthyroidism

Hi there, have not read all messages in this thread fully but thought I would post my story. I don't have Graves but do have an underactive thyroid.... When we investigated I had more symptoms than I realised and the doc was pretty sure that my blood test would come back low... I had previously had 3 tests in the past 10 or so years which had all been borderline low. This time however the reading was low with the enzyme level high. Apparently this means they are trying to stimulate the thyroid but not having much luck.. ;-) My other symptoms were a very low pulse rate.... I'm not super fit but my resting pulse is 60... Splitting and flaking fingernails and dry skin (both of which I put down to changes after menopause) no weight loss despite diet and exercise... my fingers often puff up at night and become stiff. Waking me in pain during the nights.

I've been on 1200 for over 12 months now. In the first 4 months I easily lost 10kg. Since Feb however I have been eating the same healthy 1200 calories and still not dropping any more weight. Feeling frustrated I went to the doctor who sent me to a dietician. The dietician couldn't work out why I wasn't dropping weight. She suggested a couple of changes which I tried and acutally one... which was eat purely protein caused me to put on 2kg in 2 weeks. CHanged that to protein and vegs but no carbs.. Lost the 2kg I'd put on but not more... She ended up deciding it must be medical.... Back to the doc. Blood tests showed that my thyroid is not functioning properly. The enzymes are high but they are not being successful in stimulating the thyroid function which is low.... SO I am now on a very small dose of thyroid medication for 8 weeks to see if that helps.
It is good to finally find out that it probably wasn't my diet and exercise plan that was not working.

Blood tests again in 6-8 weeks to see what is happening.

Hey Micqs,

I don't personally have Grave's Disease but I've looked after my mother-in-law for two years, since just after she was diagnosed. Her personal journey has included:
- massive weight loss. She's been a small-ish size her whole life, but went down to a tiny 38kg at 158cm tall. She was hospitalized for her weight.
- She struggles, daily, with fatigue and exhaustion. Getting out of bed is such a trouble.
- Even with the fatigue, she struggles with severe insomnia. She cannot sleep or rest easily, at all. She has tried many different therapies for insomnia but to no avail.
- She often has 'heat waves' or in normal terms, spikes a fever quite frequently. There are times when her fever means she overheats; has chills; feels extraordinarily clammy; uncontrollable sweat and flushing of her facial nerves.
- She struggles with a lot of pain. I don't quite understand how it stems from the Graves' Disease, but she suffers a lot of muscle and bone aches.
- Contrary to her high fevers, she also has cold times. She cannot maintain a regular body temperature and either sweats excessively or has uncontrollable chills and shakes.
- Probably the biggest, and most intrusive symptom to her disease is the amount of doctor visits she's had to make. Last month she had her thyroid removed as medicine to maintain healthy T3 and T4 levels were ineffective. She's been doing a million times better since then, but that's definitely a last resort and surgeons and doctors will avoid that route unless necessary.
- She has a lot of nausea and occasional vomiting/diarrhea episodes.
- She also has heart palpitations which can occasionally be painful.

Graves' Disease is a harsh disease which is greatly underestimated by the general public.

I wish you best of luck, and hope that you find a brilliant endocrinologist who can really help you with your terrible disease.

God bless!

I know this is a little bit old but I thought I would contribute. I was diagnosed Grave's in 2008. I was put on methimazole and quickly gained a lot of weight (about 35 pounds). I tried going off the med, checked my levels and they just barely went above normal so my endo recommended I go back on the methimazole. After taking it for 6 months I asked if I could try going off the medicine to see if I had gone in remission. At that point I stopped the medicine and stopped seeing my endo. My primary dr checked my levels for me regularly and they stayed stable for a long time. During this time I was eating healthy and exercising regularly, I lost 25 pounds of the weight I had gained. This August I noticed I started having the rapid heart rate, palpitations, and heat sensitivity. I went back to my old endo and he ripped me apart for not just going through with the radioactive iodine......so I found a new endo. She said there is no reason I can't just continue taking methimazole and not do the RAI. I have my uptake and scan scheduled for this Monday and Tuesday because she said I have nodules (something my old endo never mentioned or addressed?!) She doesn't think my diet and exercise could have any effect on my thryroid....but this is how most doctors feel unfortunately. I do want to go on the methimazole just to get my symptoms under control but I do intend to taper off of it after I feel I have made a decent effort of increasing my cruciferous vegetable intake, lowering stress (meditation and yoga!), and eating as anti - inflammatory as possible. I'll keep you posted!