Graves Weight Gain

[Abberdabbers22]

Hello,

I’m wondering if anyone could give advice or have had similar experiences, but I’ve struggled really bad with weight gain on Carbimazole and I feel a bit helpless. I started a 20mg dose in July and within a month a put on 1.5 stone (20lbs). I freaked out. Especially since I had told my endocrinologist and GP that I had actually gained weight despite the hyperactive thyroid, but never at this pace+ at that point I was considered “obese” before being diagnosed and starting meds despite diet changes. It took a lot of convincing me to continue, but my Drs assured me that this amount of weight was okay and my GP made me feel bad bc he was suggesting I was being “vain” and it didn’t matter.

Fast forward and I got a personal trainer and started working on my diet, going into calorie deficit, strength training 4x a week, swimming 2x a week, getting 8k-10k steps a day consistently, and trying my best to reduce stress. This held my weight in place BARELY. No matter what I did, the scale still seemed to uptick 10lbs more and it took a mental toll on me bc I don’t have a lot of money in the 1st place and paying for personal training, therapy, and now a new wardrobe bc I no longer fit anything…. Was such a drastic change for me on top of the symptoms I was experiencing from graves. Alas, I was laid off on top of it in November and since then I’ve been trying so hard to balance everything.

I have managed to keep my routine the same despite everything, but I lost it again today when stepping on the scale and once again seeing I’ve gained a little over 1 stone (15lbs) in a month again. I don’t think this is okay. It’s not natural to gain a copious amount of weight in such a short span in spurts. Both my endocrinologist and GP won’t help. They say maybe in 2 yrs it’ll get better…and the thing is that I don’t wanna live like this for 2 YEARS!!!!! I’m young, I’m 26 yrs old and I don’t want to spend this time absolutely miserable. I’m scared the weight gain will only progress as it’s been 8 months and it packs on in spurts no matter if I’ve kept up my diet and activity.

I want to mention that I also have PCOS and in the summer my when I first met my endo, she didn’t believe me, but test results came back that I was high on testosterone (key indicator) but that she didn’t think it was a “big deal”.

Has anyone gone through this? Anyone had anything that worked for them to help? I’m originally from the US, so NHS has been interesting to navigate, but I feel like my drs are acting negligently. They constantly ignore what I say, even though I feel something much more is happening. I live in Gla, is there anyone in Scotland you’d suggest?

[JoMax]

Hi. Unfortunately I don't have any answers. But I have experienced the same. I'm at my heaviest now after 8 months of treatment for Graves. Doctor and endo won't even discuss weight with me.

Have been told its not Carbimazole when I ask. No matter what I do it won't shift either. And I'm 48.

[PurpleNails]

Welcome to forum.

You might like to also post on main thyroid uk forum which is very busy with lots of active / helpful members who can offer advice.

About 10% of us with hyper gain weight. Our energy is low & appetite high so there is some logic to it.

I started on 20mg carbimazole had lots of adjustments eg 10mg, 15mg, 5mg different doses on different days (10 / 5 alternating days). Currently on 10mg per day. I don’t have autoimmune Hyper Graves. I have a hyper nodule, so thyroid levels (FT4 & FT3 - remain elevated but not sky high, which is more often the case with a Graves)

20mg isn’t a high starting dose & it not usually to stay on same dose -have you had regular retests? Eg 6 weekly?

Was you Graves confirmed? Hyper can be transient, so very important to confirm.

Do you have access to your blood test results? Many of us have set up online access to view then or you can obtain printed copies. You need a copy as it must include lab ranges. (Ranges vary between labs, do need for each test. Even if tested in same location / arrange by same doctor. Ranges can change)

Obtain your results & we can explain them to you. For full thyroid function you need the following.

TSH, FT4, FT3

TPO & TG Antibodies TSI & or TRab to confirm Graves

Also important to test

Folate

Ferritin

B12

Vitamin D

Gluten issue common with Graves has this been tested?