I have a toxic nodule and on carbi 10mg. I'm due surgery for a hemi thyroidectomy in a couple of months after 3 years of hyperthyroidism. During that time I have gained over 4 stone. Even while in full blown t3 toxicosis I was gaining weight. I also gain weight if over medicated and hypo. I can't win. I'm trying to lose some of it before surgery but I can't make it budge. I'm on 1200 calories a day now, after dropping my calories due to more and more weight gain and I'm not losing, and slowly gaining most weeks. I'm obese. I should be losing fast on that. The studies show weight gain after thyroid surgery and I just can't gain any more. Any other hyper patients not able to lose weight? My endo is not interested. The only time I lose weight is fasting, 750 calories a day for a full week and I lost 2 pounds. I'm beyond fed up with it. I also have uctd/lupus.
Hyperthyroidism and weight gain: I have a toxic... - Thyroid UK
Hyperthyroidism and weight gain
How were you diagnosed as Hyper ? Which anti-bodies were tested ?
Your post from 2 years ago ...
My t3 eventually went over their upper limit, my t4 was just within range, my Tsh was 0. After months of walking around with sub clinical hyperthyroidism, they tested all my antibodies which were negative, and diagnosed me with t3 toxicosis from a 6cm toxic nodule. As its not going anywhere I would need to be on anti thyroid meds for life, hence the hemi thyroidectomy. They have recently retested my antibodies just in case, and still negative.
Which anti-bodies were tested ? Do you have copies of the results ?
I was looking but I can only find copies of thyroid level tests. But after this long, I'm told autoimmune hyperthyroidism would usually have gone into remission at some point, even for a few months. Mine never has. plus t3 toxicosis, with "normal" t4, is not the usual progression of autoimmune, but is common with toxic nodule. apparently they don't see many toxic nodule cases though. They weren't so sure what to do with me, and it's hard to keep the thyroid balanced as my nodule keeps adjusting and making more t3. I now have atrial fibrillation from being hyper for so long.
This is all I have and an ultrasound report on my nodule ibb.co/i0uPCK
Yes they say consistent with being Hyper on the form - but it can also mean you re going through a Hyper phase with Hashimotos - when you can swing from Hyper to Hypo until the thyroid is no longer able to produce thyroid hormones and people go Hypo. This is why it is so important to have anti-bodies tested - TPO & Tg for Hashimotos - and others for Graves.
We have seen more than one case here on the Forum when members have been mis-diagnosed and mis-treated.
Without anti-bodies being tested no-one can categorically state what it is you are suffering. AF can also be a Hypo symptom - the heart is very sensitive to thyroid hormones - both too much and too little. When the Thyroid is struggling it can produce additional T3 in an effort to keep the body going I have read.
Are you in a position to have Private Testing through Thyroid UK website - see below and click onto About Testing. Medichecks have Special Offers on Thursdays !
I could of course be completely wrong - I am not a medic - just a Hashimotos gal with a B12 issue and Crohns.
I've never had any hypothyroidism, except when over medicated. And it's been 2 years, I would expect to have been quite badly hypo at some point with my current meds. But when I am over medicated, my t3 is often still high, as you say, attempting to compensate. I know the antibodies were definitely tested, as they wouldn't operate until they had done them, and then repeated them. I am also monitored every 6 weeks, and my thyroid, on my meds, is often just borderline hyper, I have to take 5mg of anti thyroid twice a day, for two days and three on the third day, to keep it steady. They would rather do radioactive iodine but I have young children. Plus the nodule is causing breathing issues. I'm not in a position to pay for testing, but I can get my medical records and see what they tested.
SeasideSusie SlowDragon - please can you help me here - do not want to persue if I have it wrong 😊
happyp I have called in the cavalry in case I have not been accurate with my advice. Both are experienced Administrators here.
Unfortunately it's beyond my experience Marz - nodules and hyperthyroidism. Hopefully SlowDragon might be able to contribute.
I was wondering about anti-bodies ?
Marz - I would say exactly the same as you - test both types
TPO and TG for Hashi's
TSI and TRab for Graves
We have seen far too many mistaken diagnoses without testing on the forum lately, it's very worrying.
Thank you for your input ...
when I am over medicated, my t3 is often still high,
Well, that doesn't surprised me. If the extra T3 is coming from the nodule, antithyroid meds are not going to stop it. They only affect the thyroid.
It's perfectly possible to put on weight when you have too much T3, just as it is when you don't have enough. However, if you get rid of the nodule, it's possible that the remaining half of your thyroid will tack up the slack, and even out your hormones. When you have the right amount of T3 - not too much and not too little - you could very well lose the weight.
But, your diet worries me. You can have too few calories, and not only will that send your body into starvation mode, but it will also affect your conversion of T4 to T3. There's not a lot you can do at the moment, I realise, but once the nodule has gone, I think you really ought to revise your diet and eat a bit more. On such a low calorie diet, it could be that you also have nutritional deficiencies, so it would be a good idea to get your vit D, vit B12, folate and ferritin tested, just to see if they're OK.
greygoose what do you think about the lack of antibody testing ?
I supplement b12, and vitamin d as my lupus means I can't go out in the sun, and my iron levels are unfortunately borderline low no matter what, but once my thyroid is removed, I hope to be able to eat a more "normal" diet. My current diet is simply trying to stop any more weight gain before surgery. It's risky enough with all the issues. They tell me that touching the nodule could cause thyroid storm, so it's important my t3 doesn't get too high before surgery. I haven't seen my t3 in an optimal range in a long time, but they are happy if my t4 remains good and my Tsh isn't 0. Hopefully you're right, and maybe I'll lose weight once my nodule is gone and my t3 back to normal. I know, at times, I'll suddenly lose a load of weight, and I reckon that's probably when my thyroid is temporarily really good, and then it's off again and I'm gaining 7 pounds in one week. I'm going to ask for my medical records too. So I can see what's been done.
Thanks for all your help.
If you are gaining 7 lbs in one week, that is not fat. Fat does not go on that quickly. That is water-weight, which is common with thyroid problems. It's also quicker to lose!
That's what I initially thought, but it doesn't come off. I just gain that, then nothing for a couple of weeks, then gain more. It really frustrating as I'm hungry damn it.!!!
Then eat! You're not going to do any good starving yourself. You have a sick body, it needs nourishing, not punishing. And what you eat has nothing to do with water-weight.
It's not so much punishing but I'm concerned about how much extra weight I'll gain before surgery. I'm already obese and have gained a lot of weight, and probably will gain more after, I don't want to add what could be another stone before surgery. I'm trying to just eat as healthily as possible and exercise, if only to limit the weight gain a little.
Yes, I understand that. But you shouldn't be going hungry. I didn't mean you were deliberately punishing your body, but going hungry is a punishment. I hope you haven't cut down too much on healthy fat.
No, I eat a moderate amount of fat from coconut milk and oil. And from nuts and olives with salads. Hopefully I will be able to slowly eat more after surgery.
This is the last 3 months of weight while dieting. ibb.co/mL1uEz I'm getting nowhere, but am determined not to get any fatter
Wow! That graph swings wildly! And, do you feel that it bears any correlation to what you were eating during that time? Or is it totally unrelated?
I haven't been able to find a consistent correlation. Obviously I know if I have a day of homemade pizza, I expect some water weight, but even that isn't consistent. I weigh myself regularly to try and see any pattern. But I really don't know.
Sounds as if you haven't proved that eating makes you put on weight, then. When is your operation? Do you have time to experiment?
Not sure. I had my pre op two weeks ago and my endo nurse said it normally means surgery is within 8 weeks. Thats all I know. But I have some time before surgery since I don't have a date yet
I'm not sure I know what a pre-op is. I would have thought it was something that was done just before the op, not 8 weeks in advance. That sounds rediculous.
OK, well as you have the time, why not try eating more - good, clean food, obviously, not junk food - and see what happens. Are you a meat eater or veggie?
Meat eater but no dairy as I'm allergic. I'm not sure how I feel about eating more. Worried about more weight gain I guess, but obviously eating this little is having no real effect on my weight, its just up and down and up again. I was originally eating 1650 calories, and not losing weight, so kept just dropping the calories. And yes in theory a pre op should be done right before surgery, but frequently isn't. It just checks your suitability for surgery and general health, iron levels etc.
Yes, I understand how you feel. Obviously it's up to you to decide, and yours is rather an unusual case. But, surely it's worth a try, no?
I seem to just gain weight although I barely eat. I've been on 100 thyroid tabs for 15 yrs. I'm also on iron twice a day. No matter what I do I just gain weight it gets be so down
This is an 2 year old thread your comment might be missed.
Suggest you start a new post with a bit about your history and what medication you currently take.
Do you have any test results? You may be under medicated.
It certainly doesn’t sound like typical Graves’, although my endo says it’s not unusual for FT3 to take longer to come down within range than FT4 (and this happened to me).
In theory, it’s possible to remain on low dose Carbimazole for the long term, but your current dose isn’t particularly low.
The problem with a TRAb test at this stage is that the Carbimazole could be helping to keep your antibody levels under control. Iit would be worth pressing them as to why they are so sure it isn’t Graves’, because if it were Graves, removing half the thyroid might not be enough.
I have been warned that there is a chance that the surgery won't stop my hyperthyroidism. They say they are fairly certain it's not graves, but they cannot be 100% sure. Just like I've been warned that they can't be 100% sure it's not a cancerous nodule. I've and two fna and both were negative, but it's a complex nodule, very large, growing behind the sternum, and I have enlarged lymph nodes around it, so they say the fna is not 100% definitive, it's only a fine needle, and can miss cancer, but as its a toxic nodule, it almost always benign. Guess we'll see what happens after surgery. I'm just hoping to not need my anti thyroid meds, even if I end up needing thyroid meds. the nurse said she would choose being on thyroxine over carbimazole any day.
Have you had a diabetic test recently? With that sort of weight gain, there is a possibility you maybe. If you are diabetic or pre-diabetic, Metformin or Byetta should assist you in losing weight and feeling better.
Only undiagnosed type 1's lose weight, that is not the case with undiagnosed type 2's.
I was tested a couple of years ago, and they were fine. I also test my fasting levels at home periodically, and they've been great. I do have pcos, so I expect some level of glucose Intolerance but probably due to my pretty healthy diet, my numbers aren't even in the prediabetic range any more. They were a few years ago.
See if you can get a proper Glucose Tolerance Test. This is about two hours as it involves drinking glucose and bloods drawn before and after. Fasting tests at home may not be the best indication as the level of HbA1c is an average of 3 months blood glucose reading and more accurate. Good luck x
I had a gtt 3 years ago due to previous gestational diabetes and it was perfect. But maybe a follow up of at least hba1c might be good. But knowing my numbers from two pregnancies of testing regularly, they are currently really good.
I had 2 insulin-dependant gestational diabetic pregnancies as well. I was diagnosed with diabetes (during my annual test) a few years ago, HbA1c was 48 and I weighed just 10st. I was put on Metformin due to family history. I upped my exercising and went on Cambridge Weight Plan, after researching the results of the Newcastle Diet on reversing Type 2 diabetes. My diabetes went into remission, HbA1c is now 35 for the last 3 tests (almost 4 years). Next test in December. My sub-clinical hypothyroidism was diagnosed last December during these routine tests.
Similar story here (in UK) I put on weight before and after radio iodine for hyperthyroid and toxic nodule, (i then went hypo, now with a small dose, 50 of levothyroxine which they say is enough but doesn't feel like it), no doctor EVER interested in weight gain, they practically laughed and said "have you never heard of middle aged spread?"
They also did blood tests, for Cushings I think, (I have cysts on the adrenal glands but they said they didn't seem to be growing) but they lost that blood test before the result was known,no one apologised I refused to redo it when the consultant's secretary suggested it, because I felt really ill for two weeks having to give up some BP pills to take the test, my G.P. said to go back on my pills, forget the test, but I took the test one day early and took my pills to the hospital to restart immediately.
I tried to diet on my own and failed, kept going up, but I have lost 1 stone 6 lbs on The Cambridge diet in 6 weeks, only 2 stone more to go...to 9 1/2 stone, to my ideal BMI. But I couldn't live the way I was going, so uncomfortable and depressing... and I didn't get any help at all from the NHS. BTW, I gave up worrying about losing weight too fast or getting (more) wrinkles...it has just GOT TO GO. even if I have to live on the diet for ever. And, many of the hospital staff who I mentioned weight (fat) problems too said not to worry about it... but they badly needed to lose weight themselves!