Grave's disease help

SouthernSkylark · June 2019

Hello 🙂
This is my first post, really hoping that this great community can help.
I was diagnosed with Grave's disease in February and since then have been on the different medications to control the symptoms: Carbimazole, Levothyroxine and propranolol.
I have gained nearly six kgs since then with no signs of it slowing down ☹️ and I am unable, for the time being, to do exercise that raises my heart rate significantly.
I take need to lose weight before something like diabetes is added into the mix!
Is there anyone with experience of this that has successfully lost weight? What worked for you?
Thank you🙂

canadjineh · June 2019

You've gained?? Are you sure it is Graves' disease, as that most often causes weight loss even when eating a normal Standard American Diet? Have you already had radioactive iodine to reduce your thyroid output? Levothyroxine is used for hypothyroid disease, not generally for Graves' disease. Do you have an endocrinologist - very important in Graves' disease as the heart & vision symptoms can be very serious?

Anyhow, I am not a doctor, nor do I play one on TV.... although I do have a medical & physiology background.
I am hypothyroid due to autoimmune issues as well, and taking very low dose dessicated thyroid which works for me. I've lost weight using a low carb diet (under 50g daily net). That kind of diet is also better for hyperinsulinemia/blood glucose - preT2D issues if you are concerned about that. The beta blocker you are taking for Graves' can worsen blood glucose control.

Here's the Mayo Clinic site on Graves' Disease if you'd like more information: https://mayoclinic.org/diseases-conditions/graves-disease/symptoms-causes/syc-20356240
and the Pharmacy Times website for more info on all the meds/treatments for Graves' (It's a bit technical as it's mainly aimed at licensed pharmacists:) https://pharmacytimes.com/publications/issue/2009/december2009/hspthyroid-1209

Good luck! Keep in close contact with your health providers and I'd ask why you are getting levothyroxine. Just a thought.... Hashimoto's Thyroiditis (Autoimmune Thyroiditis) can be hard to balance with meds and can swing back & forth from one extreme to the other. Here's more up to date info 2016 from the National Institutes of Health (US Gov. site) on both autoimmune conditions hypo & hyper: https://ncbi.nlm.nih.gov/pmc/articles/PMC5053048/

SouthernSkylark · June 2019

Thank you for your reply 🙂 definitely have Grave's. I initially lost 12 kgs amongst all the other symptoms, and my endo has put me on the block and replace treatment hence the carbimazole and levo. The weight gain had been since being on medication, I've put on what I lost and more! At the moment my symptoms are not adequately controlled.

I'm not suitable for rai due to my eye symptoms. I am in the UK so I don't know if advice on this varies compared to the U.S.

I'm interested in looking more into your diet suggestion, and the impact on blood sugar control because of the beta blockers.

Thanks again

simmonsbees · June 2019

I have Graves disease that has been in remission for several years now. RAI is unfortunately the “standard of care” in the USA, and I had to change doctors due to unreasonable pressure to utilize this treatment. I also had eye issues, which is a contraindication for RAI. Thankfully my ophthalmologist was supportive in resisting RAI. My eye issues have eased over time and continue to get better the longer my thyroid levels stay stable.

Is your doctor basing your replacement medications on the TSH? That takes a while to normalize (maybe not ever based on the antibody levels). They should be dosing on the Free T3 and Free T4 levels. You can be hypothyroid based on the Free thyroid levels but appear (inaccurately) to still be hyper based on TSH levels that are affected by high antibody levels. Maybe speak to your doctor about your lab levels and see if you need to adjust the carbimazole blocking or increasing the replacement.

skinnyutahgurl · June 2019

That mix of drugs is killing off your thyroid and your metabolism, that explains the weight gain. I was diagnosed with Graves disease in ‘94 or ‘95. Before that dx I could eat everything I wanted and was a size 3/4, that part was fabulous! The dry eyes, rapid heart beat, raging irritability & sleepless nights were miserable. I chose to go the least invasive route and use the medicine to kill off my thyroid. I gained 20 pounds in six months because I continued to eat the way I did when I had Graves and didn’t realize this medicine would completely destroy my metabolism. Eventually my thyroid died out. I had a short span of normal lab results “remission” and then it went the other way. I now have Hashimoto’s and hypothyroid. I have gained quite a bit of weight and have lost some weight too. I have found that the best way of eating has been to reduce white breads, pastas and sugar. I try not to eat gluten as it causes inflammation for me. If I stick to lean meat, fruits, vegetables, a little dairy like cheese and yogurt I lose weight, it’s slow but it happens. I feel a lot better too. Also, if I watch my portion sizes it really helps. It’s pretty standard but in 24 years after trying all the things, it’s what works. Oh, and patience, it’s a must. All the best-

SouthernSkylark · June 2019

@simmonsbees and @skinnyutahgurl - your replies have been super helpful! Thank you! My TSH is still really suppressed at 0.05 but my T4 crashed to 8! I've just had another set of bloods done so should get the results this week. 🙂

louisevmulqueen · August 2019

I have Graves (Sept 2018) many other symptoms prior to that. I was shocked - I expected the Low Thyroid diagnosis because I put on weight super easy. I am on Carbimazole current 10mg per day. I am following a strict diet regime Following Auto immune Protocol overlayed with FODMAP and Intermittant fasting. What I eat Vegetable and MEat/Fish I don't eat Flour/wheat products Dairy Potatoes (Sweet Potatoes OK) Legumes (so no Rice or beans) I have done a fair bit of reading and trial and error. I pay attention to my whole body symptoms I believe i am in a histamine overload state and inflammation Currently reading The autoimmune Fix by Dr Tom Obryan - It is bringing my trial and error insights back to medical reasoning. So I do feel that I am on the right path for me.

lynle0423 · February 2022

I have Graves (2017) and have gained weight. According to my endocrinologist, 10% of patiets will gain weight. You also gain when you are on the Anti-Thyroid as it slows your metabolism but doesn't curb the appetite.

I will not be able to do RAI as my goiter is 7 times its size. It will be surgery for me. I also have Hashimotos which doesn't cancel out the graves symptons. We can only treat the graves for now.

I am doing a Lot of different diets trying to find what will work for me.

Grave's disease help

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