Only so far and no further? How do I get over the next hurdle?

I was referred to endo who agreed to a combination T3/T4 trial and am now discharged from endo as he considers I am now ok on combination. I asked for an increase in T3 as I still have symptoms eg low body temp, very tired and unable to lose weight despite 800 cals a day and gym 3/4 times per week. He basically said tough i have to put up with it as he is not prepared to increase meds t3 and t4 levels are low but he said they vary anyway but tsh level is 0.4 so will not increase meds as he has to keep me 'safe'. My gp is sympathetic but not prepared to go against endo but would refer me for a second opinion to anywhere I wanted to go but doesn't know of anyone who would be any different! Can anyone suggest anything please??

9 Replies

  • Your body may have gone into 'starvation mode' with you only having 800 cals a day. Your body needs at least 1200 cals to function properly. It will use what it is given to fuel itself, and not what is in storage (bodyfat) as it will use that to repair itself through illness.

    One of my sis-in-laws thought she had reynards disease, plus she thought she was fat and couldnt lose weight despite going the gym, and when she went through her diet and exercise the doc told her that she simply wasnt eating enough with 700-800 cals a day and her body was struggling to function and therefore was shutting down non essential functions, like pumping enough blood to her hands and feet, so it had enough energy to protect her heart. lungs and brain.

    she has had to see a dietitian and a psychologist, as she is a size 8 and thinks she is fat, to help her body recover from the damage of a limited diet and punishing exercise program.

    Ann xx

  • sorry been there before if i eat more i put weight on and then unable to lose it again don't believe in starvation mode third world country people aren't fat on not enough to eat!!

  • and also definitely not a size 8

  • And they're not hypo, either! You need enough calories to support conversion. If you don't have enough, you don't convert, you get more hypo and put on more weight. And then again, you are going to the gym and using more of the calories you don't have enough of. And by going to the gym, you are also using up the hormones you don't have enough of, so that is going to make you more hypo, too.

    Sorry, but you asked for suggestions, and those are the bare facts. What is going to help you lose weight is getting your hormones optimised.

    Your endo obviously doesn't know what he's talking about - keeping you safe, indeed! That's exactly what he isn't doing! He is putting you in danger by not giving you enough hormone to make you well. In your place, I would seek out a more knowledgable doctor who knows that a TSH of 0.4 is not a problem, even a suppressed TSH is not a problem, and takes into account your symptoms and the readings of your thyroid hormone bloods - FT4 and FT3 - and doesn't talk through his hat about 'keeping people safe'!

    Hugs, Grey

  • I just wanted to add that people in third world countries bodies shut down and they die because they do not have enough to eat. Their bodies will use what they put in, then their bodies will basically consume themselves in order to survive - that's why they're not fat. They don't have the luxury of even 800 calories, it's a totally different scenario.

    Also, not eating enough calories puts your body into preparation for starvation and therefore it stores any fat it can, at which point when nothing else is going in it will then use to try and survive(as above).

    However, I do understand where you're coming from and am actually in a very similar situation to you regarding endo and meds. Just trying to do research to send my endo a letter pointing out that the TSH is irrelevant in my case. This might be worth a try for you too???

    Good luck :)

  • I agree with Ann. I also wasn't taking in enough calories when I first started having symptoms - mostly because I just felt extremely full and bloated all of the time, so not hungry at all. I was struggling to get up to 900 calories a day. At that point, I was still putting on 1Kg a week approximately.

    Your body needs calories coming in to stimulate the metabolism. Otherwise, like Ann points out, it will just start 'shutting down' and the weight you are worried about will never shift.

  • I suffer with wight gain, and have found a super diet, but it is very hard to do long term. Every other day, have 300 cla, and then eat what you like the other day. Its very hard to do, but at least you can look forward to the next day of eating normally. Just eat stuff like soups and yoghurts, salads, on the starving day, I can lose 3lbs per week on this. Only recommend you do this for 8 weeks max at a time. I have to do it about 3 times per year. Not too bad. But is does work. I am fed up with doctors not taking this seriously, they just dont get it. they dont get how depressed it feels not to have your health and be like you used to be.

  • Just wanted to emphasize blood tests t3 and t4 are both low he is going off tsh which is supposed to be irrelevant when you are on t3

  • Well, that's doctors for you! TSH is irrelevant for everybody on thyroid hormone replacement, be it T4, T3 or whatever. Ignorant so-and-sos. No, not their fault, I suppose, that's what they learnt in med school. But wouldn't you think that they'd realise it isn't working???

    So, you have your answer then, you aren't on enough T3 to lose weight. The problem is, of course, taking T3 almost always makes the TSH nose-dive so doctors then think you're over-dosed! What can you do? Try and educate him, take him articles that say this - you'll find plenty if you do a search in the search window above - and if he resists, ask to see an endo - of your choice, I hasten to add! There are some good ones listed somewhere here. And if all else fails, change doctors.

    Hugs, Grey

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