Weight gain with block/replacement treatment

[grace86Ams]

I was recently diagnosed with Graves' disease and was put on 30mg strumazol. 5 weeks later my T4 levels were at 15 and I started 25mcg levothyroxine. However, I started gaining weight a couple of weeks ago and after a week on levothyroxine I am still gaining around 1-2 lbs per day. Has anyone else experienced this and could tell me if/when this will level off? I already eat a very healthy diet, and have cut my calories to 1300 a day but I can't seem to stop the weight gain. I wondered if my levothyroxine dose is too low - I have seen articles suggesting that 50-100 is a normal starting dose. Its a real concern for me and I'm considering whether a few days not taking the strumazol/halving my dose would help the situation, although I'm sure this is not advisable from a doctors point of view.

[grace86Ams]

That should be FT4 levels at 15!

[greygoose]

How was your Grave's diagnosed? Did you have a positive TRAB or TSI test? Were your TPO antibodies tested? How about TSH, FT4 and FT3, what were they on diagnosis?

[grace86Ams in reply to greygoose]

Thanks for replying! I went to the GP with symptoms of fatigue and mood swings and they did some blood tests for hyperthyroidism. I had a positive TRAB. I don't think TPO antibodies were tested. TSH was unmeasurable (-0.001 mU/L) and FT4 was 51.3. They didn't measure FT3.

[grace86Ams in reply to grace86Ams]

I should add that I am an expat living in the Netherlands so I have struggled a bit to understand everything due to the language barrier

[greygoose in reply to grace86Ams]

Yes, I understand. But, they did test the TRAB, so that's the main thing. All too often doctors don't do the right tests, and just guess at Grave's because the TSH is suppressed. Pity they didn't do the FT3, though.

[SlowDragon Administrator]

You will need bloods retested 6-8 weeks after each Levothyroxine dose increase

Likely you are on too small a dose Levothyroxine

TSH is especially unreliable after Graves, frequently remains suppressed long after FT3 and FT4 have dropped

So you need both FT4 and FT3 tested

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common

[grace86Ams in reply to SlowDragon]

Thanks for this. I am trying to arrange a call with my endo so will request that I have all these tests done next time. In the meantime, I have read that some people stop taking their strumazol for a few days to combat the weight gain. Do you think this would work?

[pennyannie]

Hello Grace

Graves is an autoimmune disease that happens to attack the thyroid, and the thyroid is a major gland responsible for full body synchronisation, your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.

I am presuming the medication you have ben put on is an anti thyroid drug and is intended to block your own production of thyroid hormones during this difficult period of trying to stabilise you, bringing you back into balance and enabling you to get on with your life.

Whilst the AT drug is blocking your own thyroid hormone production the introduction of the Levothyroxine is to try and restore some balance and increase your level of well being.

Its a balancing act, and imagine difficult to gauge correctly until some stability is found.

Is there a possibility of a medical review of these two thyroid medications ?

To just simply stop and start as you see appropriate will reflect in your blood tests which is what the doctors and endo are attempting to treat and medicate on.

Please ensure that you do actually have Graves Disease and that you get written confirmation for your TRab and or TSI Graves antibody blood tests.

It will be to your benefit to keep all copies of your blood tests alongside the dose levels as you will, no doubt, have to become more knowledgeable and active in your Graves journey, as it does seem to be a poorly understood autoimmune disease.

You might like to take a look at the Elaine Moore Graves Disease website.

This lady has the disease and is a medical researcher. Initially writing books on the subject, she now runs this Stateside website, it is a very well respected and researched platform with an open forum, much like this amazing site, where you can post and receive answers from the community and Elaine herself.

I m with Graves Disease diagnosed in 2003 and treated with RAI in 2005, a treatment I regret - you are better placed as your ability to access information is boundless.

There is a lot to take in, and suggest you try and relax during this difficult period where you maybe feeling exhausted but unable to sleep, eating for England but loosing weight and generally feeling wired and tired but unable to relax and uncomfortable in your skin.

P.S. I was only given AT medication when diagnosed and monitored by the hospital, so can't really comment on the pros and cons of block and replace treatment, but read of people that are doing well, on this treatment regime.

I do however think it preferable to try and stay on medication indefinitely, rather than be taken down the route of surgery or RAI ablation, since the thyroid is such a major gland.