I was advised to post under this topic to see if I can reach more people who could relate to my situation. I’m wondering if anyone could give advice or have had similar experiences, but I’ve struggled really bad with weight gain on Carbimazole. 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 because at that point I was considered “obese” before being diagnosed and starting meds despite diet changes and exercising. 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 it was such a drastic change.
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 27 yrs old and I don’t want to spend this time absolutely miserable and constantly having to invest in new clothes or follow some strict dieting . 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” and suggested to workout more and cut my calories more as well. I took the advice and worked out 6 days a week with swimming 3x and strength training the other 3x and fasting and following the cal deficit. I was able to lose 1kg over a month, but it took that level of everything just to lose that. Now, I can barely do any of it and my endo said my thyroid has overactively doubled ( she said my levels should be “under 20 but mine is 45”.
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?
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I have hyper from a nodule, not autoimmune and I gained weight. I did lose some when carbimazole was at right level and I felt well. This is when I have energy to organise good meals and exercise. When levels aren't right (too high or too low) I seem to gain weight. I know how you feel when it takes a huge effort to loose a little.
What are your recent blood test results?
It's important carbimazole is adjusted to FT4 & FT3.
Your Dr may be refering to FT4 being high, but you also need results (and ranges) for FT3.
First please add actual thyroid and vitamin results
Absolutely ESSENTIAL to confirm Graves’ disease with testing TSI or Trab antibodies
Have you had these tested
autoimmune HYPOthyroid disease called Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
This can be misdiagnosed as Graves’ disease
Or if you do definitely have Graves’ disease you may need to fine tune Carbimazole dose
Bloods should be retested 6-8 weeks after each dose change in Carbimazole
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if you have Hashimoto’s
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum. Frequently low with Hashimoto’s or Graves’ disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you so so much for this! It’s more than any info I’ve ever gotten from my Drs!!! I will try to call my dr and get my actual results, but they’ve never explained the difference to me and when I asked my endo she said to not worry, she’d update me regularly… which she never does and if she does it’s just a letter in the post saying my levels are good or bad, not the actual levels. I’ve asked them if they had a portal and they said no to that too.
My endo claims I was tested for Grave’s and it came back positive, so I’ve got that part covered. I don’t think she ever tested me for anything else beside the argument of whether I had PCOS and that came back as positive as well and she didn’t seem to care.
Neither my Endo or GP have tested me in over a yr on my vitamin levels and keep telling me that everything I’m feeling is due to my thyroid, but I’ve had a history or anemia and having the take shots for b12 and vitamin D. Again, they don’t seem to care. I’ve actually changed GP’s recently and the dr I saw ended up being one from my previous surgery, so it was very frustrating for them to know everything and once again invalidate me.
I will definitely be looking into the private testing centers!!!! This will be such an interesting immense amount of help!!
I’ll call tomorrow to push to get my levels and then update here!
Graves is an auto immune disease and tends to only get diagnosed when your immune system attacks your thyroid and / or eyes - and quite why your immune system has decided to turn and attack your body the 64 million $ question.
Graves antibodies can be blocking or stimulating your own daily new thyroid hormone production - causing hyperthyroid or hypothyroid symptoms - and can also ' switch ' from blocking to stimulating or vice versa - and sometimes both antibodies can be present and literally burn each other out - leaving you feeling relatively normal for a period of time -
What were your initial symptoms that originally took you to the doctors ?
You should have there a letter there which confirms your diagnosis of Graves detailing :-
TSH + T3 and T4 result / range and a diagnosis stating :- TPO - TgAB - TRab - TSI - or maybe
TSH - Receptor antibody reading with a number alongside - please share these details with forum members - as it helps us understand better what is going on.
Have any of these been relieved by taking the Carbimazole ?
How often are your blood test run and is the Carbimzole ever adjusted - up or down - and does it make any difference to the symptoms being tolerated ?
The thyroid is a major gland responsible for full body synchronisation - and in charge of your physical ability and stamina, through to your mental, emotional, psychological and spiritual well being - your inner central heating system and your metabolism -
Graves can take you on a roller coaster of symptoms without any of the fun - and considered life threatening if not medicated as T3 and T4 levels can keep rising putting your heart under considerable pressure.
It reads as though your antibodies are predominantly blocking causing your metabolism to have slowed too much and putting yourself through these extremes measures to try and control your weight gain will be totally soul destroying - let alone leave your whole body exhausted.
When metabolism is running too fast as in hyper-thyroid or too slow as in hypo-thyroid the body struggles to extract key nutrients through food no matter how well and clean you eat - and if your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D have nosedived - which is a common issue - this can compound your health issues further.
Be kind to yourself - none of this is your fault - your metabolism is ' shot ' and not working as it should - and all this exercise will negatively impact your overall health and especially since you see yourself as failing in these tasks that may, once upon a time, worked for you.
Was weight an issue for you previously - just interested as it was for me - and now realise I was undiagnosed hypothyroid from a child and had struggled with many symptoms all my life. I was diagnosed Graves after struggling with insomnia and only sleeping an hour a night and so visited a doctor - and looking back this all happened 3 months after an unprovoked attack by a work colleague.
Cut yourself some slack - I know it's easier said then done - stop punishing yourself - your body in a ' heightened state ' - and you need to rest and recuperate - though you may not think so !!
The medication is an Anti Thyroid drug - either Carbimazole or Propylthiouracil - and the role of the AT drug is to semi-block the thyroid hormones rising higher and higher and hopefully off set the worst of the symptoms being tolerated -
while we wait for your immune system to calm back down again and hopefully your thyroid revert to normal without the need for any drugs.
In some cases the AT drug is increased to fully block thyroid hormone production - this treatment is called Block & Replace - as a measured dose of T4 - thyroid hormone replacement is also prescribed -
so then the AT drug fully Blocks your own daily thyroid thyroid hormones but T4 thyroid hormone is also taken every day so your T3 and T4 do not fall too far through the ranges -otherwise your thyroid hormones are liable to fall too far through the ranges with you experiencing the equally disabling symptoms of hypothyroidism.
The AT drug is generally prescribed for around 15-18 months at which time it's encouraged to try and see if your thyroid will reset itself -
at this point in time it would make sense to run the antibody blood test - as if still with ' active and over range ' there's little point looking for remission -
and, or, definitive treatment encouraged - either RAI thyroid ablation or surgery - so it's very much like being between a rock and hard place :
I'm with Graves and post RAI thyroid ablation 2005 - a treatment I deeply regret - but knew nothing back then - having been refused any other treatment but T4 Levothyroine by my doctor / hospital I now self medicate and run my own blood tests and am much improved than how the NHS would have me.
We now have some research you may find interesting :-
I really really appreciate all the info and the cheering up! My Endo has never changed my carbimazole amount and I’ve wondered myself, as my dad has hashimotos and talks a lot about his meds being adjusted (more so before his thyroid was removed).
In a similar level, I do think it’s possible that I had hashimotos in my late teen years and never realized it or I had another autoimmune disease that triggered my Grave’s. During my late teens I gained an immense amount of weight that wouldn’t budge. They diagnosed me w/ PCOS yrs later when I started Uni and was put on birth control. Luckily for me, this worked and I lost over 120lbs with not even stepping foot in the gym. It all just started coming off and I think a lot to do with it was overall yrs of inflammation and hormonal imbalance, now that I’m reading through this forum. I also think my Grave’s was sparked by being harassed and bullied at work at the time. I was under a severe amount of stress.
I will definitely be taking a back seat in the exercising now. I am working so hard bc my Drs say just to work out more and eat less and it made me feel like I wasn’t doing enough.
Thank you as well for the mention of RAI bc that’s where they want to head with me and I’m scared to do it or a thyroidectomy and regret it.
I will be checking out these links! Thank you again, all of this info is so beyond helpful and more than my drs have ever explained to me.
I just want to send you an enormous hug, hide your running shoes and suggest you buy yourself a painting by numbers if daunted by starting off with a totally blank canvas.
You have been so badly advised and treated with little if any understanding of your overall health and well being - when ill we look for help, support and an explanation from the medical profession - not punishing, throw away lines from people who should know better.
Graves is a poorly understood and badly treated Auto Immune disease and yes, there is a school of thought that you will be better off having your thyroid removed, and for some patients this is the reality - but we are not there yet and your deserve to be treated properly.
There is likely a genetic predisposition to Graves which could be your Dad - guess he has his struggles with Hashimoto's - maybe he needs to ask questions about his treatment options especially as he has had his thyroid removed - as it's no walk in the park - especially if he is on T4 monotherapy and dosed and monitored on just his TSH - ?????
Anyway - first off we need to get confirmation of which antibody was found positive and over range in your initial blood test as this is the medical evidence - proof of diagnosis - which then dictates the treatment plan and drugs to be prescribed.
I appreciate nothing I say here is going to be helpful - I gained weight during Graves too and continued once put on more once I started Carbimazole - my dose is much lower than yours. Although I am much bigger than I was, I am mindful that due to side effects of the medication I simply can't exercise as much as I once did, although I still operate in a deficit nothing happens apart from gaining more. It sounds like you're putting in more and more effort and not getting anywhere, and I feel for you, as we all do on here.
I can sit here write a million times about stress management etc etc but ... for me personally, I decided not to think about it too much, now that is a LOT easier said than done, however, I stopped looking at scales and refuse to weigh myself or be weighed. I do exercise that I enjoy and that relaxes my body and mind. I am mindful that I am now going through (albeit a sh!tty) process to be me again. Music, mindful exercise like walking and yoga, sleep, eat well, repeat. Putting ourselves first is really important.
That's me I am not giving advice here as you'll get plenty from much more knowledgeable people than myself. Try and be kind to yourself xx
Thank you for this, I think it needed to be said to me because I felt from my Drs that I wasn’t doing enough and needed to do more. I will be taking your advice and working on stress management to alleviate everything! I didn’t think about it until you wrote, but it’s true in the fact that the physical stress is probably doing more harm and I have to accept that.
Thank you, I really appreciate it and hope everything is good and gets better for you!
I’ve read about the physical stress we put our bodies under through all types of over exertion- emotional, physical, etc and for me I decided to take a gentler more loving approach
I hope you get some improvements to your situation very very soon - sending kind thoughts your way x
No matter what I do or eat or don't my weight gained to a point were I'm now, because of bmi considered obese.
I've been told now by my Naturopath that I won't lose weight while my thyroid is not balanced. It's been over 13 months of nt being balanced now.
I try eat healthy anyway as sugar,carbs and gluten can make me feel worse.
You have age on your side at least,I'm 48. When your thyroid is balanced it may be easier to lose. The less stress you put yourself under the better.
I changed doctors because my old doctor would also not listen or help me in anyway. This new one seems better and I think will help me with weight now.
I’m sorry you’re going through this too! I wish there were more advancements in research on these things so we didn’t all have to struggle through this.
Super glad you changed Drs and I’m looking to change my Endo, but just super anxious about it being the same situation. After reading everyone’s advice on managing the stress and taking it a bit more easy, it all makes more sense to me. Thank you for commenting and I hope your new Dr helps you!
Hi Abberdabbers - your info gave me a light bulb moment - thank you! My situation is similar although different, but I think you may have shed light on the link between hormone imbalance elsewhere and carbimazole for hyper. I was stable on carbimazole for several years with normal TSH and T4 at each 6 monthly test. (I have a benign age-related goitre. ) Then I was diagnosed with oestrogen receptive breast cancer in late 2020 and prescribed an oestrogen suppressant (Anastrozole). Not only did I quickly gain weight and now find it very difficult to keep my weight stable, but my T3 and TSH were all over the place for a couple of years. I blamed the Anastrozole for the weight gain but studies don't show a link. I was a slim size 10 when I started on Anastrozole 3 plus years ago. Now, with lots of walking, swimming and gardening, no sugar or processed foods, fasting and counting calories I can stay just within normal BMI but if I go away and eat normally and/or don't exercise as much, I put on a kilo every couple of days. My TSH and T4 are now normal again after lots of dose changes but I have had to accept that I am no longer slim. My aim is just to keep my BMI under 25 and I have got used to the effort that takes. But your post made me think - hyper treated with carbimazole is much more unusual than hypo. Having other hormonal imbalance - you with PCOS and me with suppressed oestrogen - has not been the subject of any research I can find but we are both struggling not to gain weight despite doing everything possible. This isn't vanity - it's about keeping fit and healthy. I am 73 now but I want to stay as well as I can for as long as I can. You are very young and I am so sorry you are facing this. Could you find another endo - maybe pay for one session - who can look holistically at your whole endocrine system? I wish you well 🤗
I completely feel you MamaWink! Especially with the having to constantly eat right and exercise just to stay the same weight!
You make a very excellent point as well, which is one I didn’t realize at first that I made 😂 thank you for bringing it up! So now that I think of it, for at least me, my PCOS is dominated by my hormones (mainly testosterone) and there being an imbalance. The thyroid form what I understand helps regulate and control your hormones throughout your body… which leads me to wonder that if you have another hormonal issue and the thyroid is out of control, it could then worsen the other problem and while people like me and you who on Grave’s should be either maintain weight or losing, our other ailment spins out of control making a sort of opposite effect happen to us. Something I’m definitely going to being doing research on too! It makes sense in a way!
I also agree on being made to feel vain, a lot of people chop it up to be that, especially my Drs who I think just use it as a cop out. But, it’s different when you are past the point of obesity and you’re putting in the work to be healthy. I’ve gained a total of 45lbs (20kg) just from taking the meds and having all these disruptions and I now sit at a little over 13 stone (185lbs) with height of 5’5. For me, it’s gets to be a lot of weight to carry along with the struggles of my health issues and putting on more brings more ailments in my experience. I don’t want to be a “skinny mini” so to say, but I’d like to feel comfortable, be a medically safe and stable weight, and not continually climb up the scale and be more miserable.
I’m going to look into another Endo soon! I think I’m just not matching up with the one I have and would like even love to have a holistic one! Thank you so much for your thoughts, all of it helps sooo much! I hope you get to feeling better yourself!
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