Metabolism - hypothyroidism

[Suzanneharb]

Hi all,

I'm still undergoing treatment for my (25 year) eating disorder. Without a doubt, developing hypothyroidism has kept me in the trap of this horrendous struggle (fear of weight gain because of thyroid etc).

The E.D team insist that my weight will stabilise on their eating plan. They insist that, since my thyroid is well replaced (my own blood tests show this) that I, like any other normal person, need around 1800-2000 cals a day, obtained from a varied diet (protein, carbs, fats, veg, some treat food.)

I am terrified because I don't know if I can believe them or not. Is my metabolism normal, or does even a well-replaced thyroid patient have a slower metabolism than normal people? If so, do you have links which prove this so I can show the team I am with.

Many thanks in advance,

Suzanne.

[tattybogle]

Hi , i don't have any experience of earing disorder, but thought i'd let you know the following in case it helps :-

If you want to be a 'well replaced thyroid patient' then you need to understand that most GP's only look at the TSH to decide dose of Levo, and if TSH is lower than they'd like ,they won't increase dose.

One thing i've read on several thyroid studies is that a very low calorie diet may reduce TSH, so there is a possibility that if you aren't eating enough calories, your TSH might be lower than it ought to be for your levels of thyroid hormones T4/T3 .... so a doctor only looking at TSH may then leave you on too low a dose of levo (T4).

And while most people on Levo at the right dose don't keep gaining weight, people on too low a dose often do. So you do need to be eating enough calories to avoid falling into this trap of undernutrition being a factor in low TSH .

Gaining weight is one of the signs of being on too low a dose of thyroid Hormone.

[Suzanneharb in reply to tattybogle]

Thanks, but I actually never see a GP (my surgery pretty much closed its doors a year ago). I run my own blood tests and do know what I'm doing (thanks to this forum!). Certainly when I was in full-blown anorexia, my FT3 was very low.Now I'm eating normally, just about at a normal weight, excellent thyroid function (FT4 and FT3 right at the top of the range).

My question is whether our metabolism is screwed by the fact we have hypothyroidism, even when well-replaced? How do I know how many calories a day I should be eating?

[tattybogle in reply to Suzanneharb]

apologies i'd mixed you up with a newbie.I don't know the answer, but my gut feeling is if you feel well , and function well with good activity levels on your thyroid replacement , then the the metabolism is probably doing the same. ie, back to normal. But that's just an opinion .

Hopefully someone else will have some facts.

x

*edit*

p.s based on the time of last dose, it looks like your actual ft4 and ft3 levels will be over range for a lot of the time, so this also points to the likely hood that your metabolism could actually be working faster than normal rather than slower. Not saying there's necessarily anything wrong with that if you feel well on that dose, just that on 200mcg of levo and 20mcg T3 with over range T4 and T3 an correspondingly low TSH it seems unlikely that a slow metabolism would be an issue.

[Suzanneharb in reply to tattybogle]

Thank you! That's really reassuring. x

[tattybogle in reply to Suzanneharb]

just seen your TSH history <0.01 ,then 0.1 (on reduced dose ?) then 0.005, and 0.005.

These are really low and will mean that your own conversion of T4 to T3 is reduced,

I did a bit of research on risks associated with low TSH, 'cos mine is lower than GP would like, and came to the conclusion that if it's above 0.04 then it's not such a problem as they make out , but i did find that below 0.04 there ARE sharply increased risks for heart and bone,

So this is something you should make sure you've done your own research on.

If it is possible for your TSH to be a little higher it may well be a benefit, because TSH does have an action in promoting your own cellular conversion of T4 to T3 via the deiodinases, (and i think? some cells ONLY use T3 that is converted from T4 , brain /heart i think , but have forgotten)

...and you would avoid the statistical risks of heart /bone problems.

If you're interested i'll find you the link to the study that convinced me to try and keep TSH above 0.04.

[Suzanneharb in reply to tattybogle]

I never knew any of this! I get terrified of the mere thought of reducing my dose (I don't trust doctors), but what you say sounds very interesting. Yes, if you find the link, pop it on here. Thanks!

[tattybogle in reply to Suzanneharb]

Ok , give us 10 minutes while i use my inept IT skills to find it

[Suzanneharb in reply to tattybogle]

Ha ha! No rush - I'm offline for a bit. x

[tattybogle in reply to Suzanneharb]

the 'risks ' of low TSH are all relative , you should do your own research, and make your own mind up how you feel about them

So ....

If you look at the first reply to this:-

healthunlocked.com/thyroidu...

post, (ignore the fact it say's 'more mature')

and click on the links within it , you will find discussions , and a link to evidence that convinced me that it doesn't really present a problem until TSH is below 0.04 and even then , it's all relative.

[Localhero]

I’ve seen mixed answers to this question, to be honest. Some articles seem to say metabolism returns to normal when properly treated. Others don’t seem so sure.

Do you track your calorie intake right now? If you do, you could consider getting something like an Apple Watch and keeping an eye on how many calories you actually use in a day. It’s not an exact science but it’s interesting data. You start to get a sense of the optimal food intake you need to stay within a particular weight range. As tattybogle said, avoid having under-nourishment be part of the problem.

Having said that, it’s hard with a history of ED not to get obsessive about it. While never diagnosed, I have a history of under eating and over exercising which I’m sure contributed to my thyroid issues. Also, hormonal shifts, due to stress, ageing, pregnancy or whatever can knock things off, which can be very frustrating. So it’s important to have a whole load of self compassion in the process.

[Suzanneharb in reply to Localhero]

Thanks!I'm not meant to track my calories. I've only just got my weight up to a healthy BMI (18.9 I think). I'm meant to just eat a normal diet (set by a dietician - about 2000 cals) and see where my weight happily settles (set point theory.) Hence my post - is set point theory null and void with hypothyroidism? SO tough to discover what MY healthy weight and calorie intake is with thyroid disease in the mix. Really struggling with this.

Definitely trying to learn self-compassion. Thanks for affirming this ☺️