I started on Thyroxine 25mcg a year ago. 3 months ago my GP increased it to 50mcg. I'm due another test next month, but recently my weight is surging upwards with no change in my eating habits, and in fact I'm cutting down and it still goes up. I have other symptoms too such as tiredness, pins and needles, hair loss.
Has anyone else had this happen to them, is it really possible to have a rapid weight gain if the levels are low, or am I just making excuses?
No you aren't just making excuses, and yes, it is possible - more than possible, you've proved it!
Your doctor has been negligent leaving you on 25 mcg for such a long time. That isn't even a starting dose - 50 is a starting dose. And the result will have been that he's made you more hypo rather than less so.
The protocol is to start on at least 50 mcg - sometimes 75 - and test after six weeks, then increase by 25 mcg and wait another six weeks to test. And continue like that until all symptoms have gone - including weight gain - which is a symptom.
Leaving you on 50 for four months is also negligence! And I'm really not surprised that you Don't feel well and have put on weight.
BUT reducing your calorie intake is not the way to go. In fact, that could make you put on more wieght because it will affect your ability to convert the T4 you're taking into the T3 your body needs, making you more hypo.
Also, cutting back on what you eat will reduce your nutrients, and you need those to be optimal for optimal conversion. So, go back to eating well. Cut out processed food but eat plenty of protein, good fat and fresh fruit and veg. It is not calories that are making you put on weight - I can't stress that enough - it is low T3.
So, if I were you, I would go back to the doctor now, and ask for blood tests - Don't wait another month, there's no point in that.
Ask him to test :
TSH
FT4
FT3
TPOab
TgAB
vit D
vit B12
folate
iron
ferritin
He might not do them all - he sounds a bit of a lunk-head - but get what you can and make it clear that you expect to get all of them. He's obviously taking advantage of your lack of knowledge in the subject to do some lazy doctoring!
Make sure your appt for the test is between 8 and 9 oclock. You need to have it done early. On the day of the test, Don't have breakfast - water only, but drink plenty of water - and make sure you leave a 24 hour gap between your last dose of Levo and the test. If you follow that protocol, you will get the most accurate results.
Afterwards, ask your doctor for a print-out of the results - it's your legal right to have one - and post the results on here (in a new question). And we will be able to help you understand them. Knowledge is power! And you need to start taking charge of your own health if you want to get well.
If anything, it's your doctors fault you've put on weight, because he has neglected you!
Take care. 
Great advice from our wonderful Grey Goose as always. P.S. you mention getting your bloods drawn between 8 and 9am, is earlier better if possible? I have managed to get mine drawn at 7am, is this better or worse than 8 - 9am? Baggiebod x
Oh, much much better! As far as the TSH is concerned, anyway. But most people aren't able to do it that early, which is why I say between 8 and 9.
I was put onto 25mcr in April then up to 50 a few weeks later. Since then although my THS came down to 1.79 I had all the symptoms I started with plus severe flu like symptoms. I suggested it was thyroxin that wasn't working and causing the problems so,cut down to 25 and they disappeared. Since then I've seen Dr Peatfield and he said that the t4 was making me toxic because it was not converting to t3. He has started me on a new regime and says I will get better.
Certainly sounds like you weren't converting it. Remember the blood tests only test what is in your blood, not what is getting into the cells.
So, can you tell us what your new regime is?
I was left for four years on 50 mcg T4, became very ill and paid to see an Endocrinologist in the end who put me on T3 and told me to increase my T4. I gradually improved and became more stable but I have M.E too and I feel that I suffered with underactive thyroid for many years before I became ill with M.E so it's difficult to fully recover now.
You need to know your levels and symptoms and take control. Doctors seem to know very little about thyroid problems and NICE guidelines on this are not fit for purpose really.
Karen
I suppose you know that there is a school of thought that says M.E. is actually un/Under-treated hypo. So, yes, staying of 50 for four years could have made your symptoms bad to that extent. But it is possible to recover to a great extent. I doubt if much permenant damage was done in four years.
What are you taking now? How much? Have you had your nutrients tested? vit D, vit B12, folate, iron and ferritin - and add selenium to that list, too!
I think that, for me, being underactive, even many years before I became ill with M.E (even throughout my twenties) did contribute to my becoming ill with repeated viral illnesses which then led to M.E when I was 32. It wasn't just the four years I wasn't on sufficient thyroxine but the years even before that.
I have felt that, for the past 9/10 years, I have been more optimally medicated which has led to some stability in my health but I can't seem to improve any further. I'm unsure why. I have been tested for some of the nutrients you list and take a good multivitamin, including Iron, as my Ferritin is always low, and B12. My doctor isn't bothered about the Ferritin, amongst other things, unfortunately. I don't really know where else to go or what else to do to help myself further so any suggestions will be gratefully received.
Thanks, Greygoose.
Karen
Your doctor isn't bothered because he knows nothing about nutrition. You're on your own on that one!
A multi-vitamin - no matter how 'good' - isn't going to contain enough of anything to treat a deficiency. You need to know the levels - do you have a copy of your results - so that you know how much to take of each element individually. That's the only way to do it.
I would say that your first step would be to get copies of all your blood tests - and if you haven't had a TFT recently, get one done - then post the results on here and people will be better able to advise you.
I think you were probably hypo a lot longer than you think - certainly long before you were diagnosed as such.
Yes, I think so too. My TSH is 0.05 which the doctors don't like but which I think is 'me' as, even when I've decreased my thyroxine slightly it stays the same. I'm on around 150/175 mcg T4 and was on 10 mcg T3 but have cut that down to two halves over a week now. I was over-medicated slightly, I think, as my heart-rate was getting higher. My T4 was within range but that the top of the range. I'll have to dig out my nutritional results as I don't have them to hand.
I did used to give myself B12 injections, courtesy of Dr Myhill, but had to be careful with 'false' energy which then made me overdo it; it also affected my sleep badly.
The one thing I haven't had tested is selenium.
Thanks.
Karen
My doctors know very little about the thyroid either!
None of them do!
TSH is of no importance at this stage - unless it's high. FT4 of little importance. What is important is the FT3 - which, of course, they Don't do!
It's very likely that you aren't converting - especially if your iron is low. And that would cause the symptoms. I Don't understand the logic of reducing your tiny dose of T3 because your FT4 was high in range. Why did you think you were over-medicated?
Taking two doses of T3 a week - if I've understood that correctly - is of absolutely no use. It doesn't stay in the blood like T4, it's gone very quickly, so the rest of the week, you have nothing.
I think you need to get your FT4 and FT3 done at the same time, so that you can see if you're converting. If you aren't, increase the T3 and reduce the T4. Unconverted T4 sloshing around in your blood isn't good.
I should say I'm not a doctor, but... lol
My heart rate was higher than now and I just feel I was a little overmedicated. I decided myself to cut down as I want my doctor to continue giving me the T3 and T4 in case I want to increase again. Even when on 175mcg T4 and 10 mcg T3 I still didn't have 'normal' energy. I will attempt to get my FT3 and FT4 tested but my doctors aren't that go-ahead so I'll have a battle on my hands.
Most people Don't bother beating their heads against brick walls, and do it privately.
A racing heart can be due to low T3, too. If you were going to reduce something, it should have been the T4, IMHO, because that's a very high dose of T4 for someone taking T3.
If your T3 is low, you won't have energy.
Maybe I will decrease the T4 and start regularly taking my T3 again. Thanks. Where would you recommend me having my FT3 and FT4 tested?
This is all very interesting. Though I have to confess, I don't understand most of it!! What is interesting is the possible connection with anaemia. I have regular Ferritin checks as it drops very low and I then need iron infusions. Probably due to poor absorption as I have no large bowel - I have an Ileostomy. I have a lot to read, digest and try to understand about what seems to be a very complex subject. Thanks to everyone for all the advice on here.
Hi Helen
I'm sorry to tell you when I was first diagnosed I was overactive I had radioactive iodine to kill my thyroid off I was then put on 150 mg of Levothyroxine (more recently 100 mg) within twelve months of taking the Thyroxine I gained three stone in weight I've tried Weight Watchers, Slimmers World nothing works, very frustrating and depressing. If there is anyone out there with suggestions in how to lose the weight I am sure Helen and I would very much appreciate your assistance. Oh by the way I am a very determined person I gave up smoking thirty years ago with no help or assistance I just decided to give up. Just to let you know when I set my mind to it I do it which is what I would like to do about reducing my weight. Gwendoline
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