I was diagnosed with Graves Disease Feb 2019. Was on Methamazole to regulate went to hypo and slowly got off medication. Been off meds for about 6 + months now. Been checking blood work every 5 weeks or so. Image shows my April and June results. TSH is now borderline Hyperthyroid My Endo said. I cannot gain weight and I am in menopause. Weighing about 109 at 5’ 5” tall. I am eating more than 2,000 calories a day. My Endo did not put me back on medication now and wants to wait 4 more weeks to re-test blood. However, I feel awful, not sleeping, heart palpitations, TMJ, gastritis and headaches! Should I be put back on meds or wait? I’m not sure if I should just take out my thyroid. Could this be all due to menopause?
Any advise is appreciated!
Thank you!!!
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Kim327
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No way are you borderline hyper. Your FT4 is only 58.06% through the range. Your TSH is low, but not under-range, and as you have Grave's, it might never rise very high again. I really don't think you need to be on carbimazole with those results.
You're probably gaining weight because your FT4 is too low, and your cholesterol is slightly high, so that could indicate that your FT3 is also low. But, it is true that people with hyperthyroidism can put on weight. They don't all lose it. Trouble is, doctors tend to divide symptoms rigidly: this is hypo, this is hyper, and never the twain shall meet! Whereas, in reality, a lot of the symptoms can be of both hypo and hyper.
I'm not an expert on Grave's, but if it were me, I wouldn't want my FT4 to go any lower.
Thank you for your reply. I’m actually losing weight. I’m about 15 lbs below normal now. With menopause I’d expect to gain now. Wasn’t sure if this could be my thyroid even though I’m slightly hyper according to my Endo.
You might need to take a low dose of Levothyroxine to help you to go into remission. My levels were very low after I stopped taking PTU. I am not an expert but I do have Graves' so I am speaking from experience. Elaine Moore advised me to do this and it worked. Have you seen her site? If you haven't I would join and ask her advice. She helped me get diagnosed when my GP thought I was suffering from the menopause for over 2 years. You can read my story on my profile page if you are interested.
I’ve been trying High protein drinks and healthy fats and haven’t been gaining or losing now. Just staying at 109 for a couple of months now, unfortunately. I drink over 1000 calories in Kate Farms shakes meal replacement and tube feeding Alone plus meals to bring me over 2,000 calories a day and some days 3,000. I do workout on the treadmill but just 30-45 minutes slow on an slight incline to keep myself moving and sane. It helps my mind tremendously!
I'm so sorry you have had a difficult time this past year and think I remember you are positive for both Graves and Hashimoto's ?
I don't have any answers I'm afraid, but it might be worth contacting Elaine Moore in the States - she is a much respected and leading authority on Graves and auto immune thyroid disease health issues and as having the disease herself has collated, researched and advised many people over the years, dealing with, and living through, this poorly understood auto immune disease.
I was only diagnosed positive for Graves. It’s been a rough year and a half that’s for sure
I’ve heard a lot about Elaine Moore. I definitely will look into getting in touch with her for help. There has to be someone with answers. I feel like I’m a guinea pig to just test, wait and see and not helping with all my pain and symptoms. It’s no way to live.
Endo said I was borderline hyper. He is retesting in 4 weeks. The thing is my TSH went from 1.31 to .264 in two months. I am concerned since my weight is low, headaches and heart palpitations started again and I can’t sleep. Some mag be due to menopause but these last few days have been worse than before.
No, she didn't misread what was said about weight, it just didn't register because where I am, we measure weight in kilos. Pounds mean nothing to me. I just took it the OP had put on weight because that's what most people complain of.
Yes, doctor stopped because in was going to hypo . He tapered me off My antibodies were tested when diagnosed to show Graves. I get my blood tested every 5 weeks. My TSH was 1.3 in April and then dropped quickly to what it is now.
Graves antibodies are used not only to diagnose Graves, but also to decide if one is ready to completely come off the methimazole.
In April last year, your TSI was still high. Antibody levels may not move in tandem with TSH FT3 and FT4 levels. So even as the rest of the levels are headed towards normal or hypo, your Graves antibody level could still be above normal, and that would be an indication that u should not come off the methimazole completely, as chances of a relapse are high, and the Graves has not yet run its course.
I think you are very fortunate with your endocrinologist as it reads as though you have been given the time and expertise to learn and understand the nuances of Graves Disease.
At my very first hospital appointment with Endocrinology in 2004 I was told I was to be given RAI treatment in about 15 / 18 months time. I mentioned that I was now ok on the Carbimazole, and back at work, but advised AT drugs were only prescribed short term and that RAI was the better option and I would be better !!!!
Hey ho - I guess it's down to the people and how they " see " their job / profession.
Because I didn't have a single good doctor throughout, that pushed me into having to read up and research when the GP kept pressuring about RAI at every appointment. A similar experience to yours.
The breakthrough point was finding the 2018 European Thyroid Association Guideline for the Management of Graves’ Hyperthyroidism. Reading it thoroughly, offered CRITICAL info on how to manage the Graves. It's a wonder doctors don't bother to read the official research?!
The thing in this thyroid journey is never say never. I don't rule out the day I might need to destroy my thyroid if it causes more problems than is sensible to keep it.
These 6 years have bought time to understand this thing and to know what brings stability and what does not. And hopefully, the ability to make a better decision when the time comes.
Am I moving towards hyper because my TSH is 0.38? It was 0.28 when the consultant in A & E tested it in February but this was after I had eaten so that might have affected it. I actually feel very well at the moment and I don't think the TSH is a good indication of thyroid function. I think the OP should ask Elaine Moore because has a lot of knowledge about Graves' disease.
Graves antibody testing is a great way to guide treatment. However, few endos seem to know this, which results in patients being taken off methimazole too early to try for remission, and many ending up relapsing and thinking the only solution is to have their thyroids destroyed. In some cases, ya sure, maybe.
But in other cases, had the methimazole been given sufficient time to work its immunomodulating effect on the Graves, who knows, chances of staying in remission could be a lot higher.
Great info! Thanks so much for helping me with this. I was definitely thinking about getting rid of my thyroid if I relapsed. It’s been a very hard year and a half for me. I really appreciate your advice!
But know this. Everyone comes to this disease with different states of health so it interacts with the Graves differently, and causes different symptoms. Should the day come when the Graves is causing u more problems than it's worth keeping the thyroid, u might then need to seriously consider getting an RAI or thyroidectomy.
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