Latest results came back "normal" but I still feel rubbish.

[Linac]

I have a recent blood test result from medichecks and they still make no sense to me. I think I am improving but this is a slow process. Are these good results? It all came back as "normal" even though I still cannot move weight and still feel absolutely awful. The doc won't help because he says all the results he has are normal and puts everything else down to the fact I have Narcolepsy and fibro.

TSH - 2.54 mIU/L Range 0.27 - 4.2 (Started at 5.7 mIU/L at 1st test April 2017)

Free T3 - 3.86 pmol/L Range 3.1 - 6.8 (Last testing was July 2018 and it was 3.52 pmol/L)

FT4 - 13.01 pmol/L Range 12 - 22 (Last testing in July 2018 was 12.20 pmol/L but my starting number was 10.12 pmol/L)

Vit D - 62.7 nmol/L Range 50 - 175 (started at 38.52 in April 2017)

B12 - 116 pmol/L Range 37.5 - 188 (Was 260 pmol/L on last test July 2018) - This seems a drastic reduction?

Ferritin - 141ug/L Range 13 - 150

Folate - serum - 6.95ug/L Range 3.89 - 19.45

CRP - HS - 4.38mg/L Range 0 - 5 (this is high but always has been. I suspect my Narcolepsy meds give false liver results as it's a side effect)

I'm thinking I should be feeling much better with these numbers? I've been taking NDT for 2.5 years now and was taking 2.5 tabs a day but stopped about 1 month ago because I really wasn't feeling any better and no matter what I do I cannot shift an ounce of weight.

I am truly fed up with this now, as so many of you are, and I cannot approach my doc because he literally tells me to lose weight, he won't accept that I can't.

I don't know what to do now. Did I need a higher dose of NDT? Maybe I was taking it wrong all in one go?

Can anyone shed any light on this for me because it really isn't making much sense to me as to why my results are ok but I feel so rubbish. Could it really just be the Narcolepsy and Fibro and all is lost and I just have to live with it?

Thanks in advance for any help or advice.

[greygoose]

Your results don't look ok at all. Your TSH is too high and your FT4/3 are so low I think you should be considering Central Hypo. Central Hypo is when the fault lies with the pituitary (Secondary Hypo) or the hypothalamus (Tertiary Hypo) rather than the thyroid itself (Primary Hypo). As Central Hypo is considered to be rare, it's not tested for and most GPs have never heard of it. But, when looking at such low Frees, one would expect the TSH to be higher. The fact that it isn't usually means that the pituitary is having trouble making it, for some reason. But, as GPs do not understand Free T4/3, they just don't notice this.

When was this test done? After you've been off NDT for 1 month? They'll probably get worse then. And, I take it the 'before' results were from when you were taking 2.5 grains of NDT? I don't know, that's not very clear.

But, how did you take your NDT? Did you take it on an empty stomach and wait at least an hour before eating or drinking anything other than water, and at least two hours before taking other medication/supplements?

[Linac in reply to greygoose]

Thank you for responding.

Yes this test was taken on 10 th july this year and i had stopped taking NDT approx 1 month ago.

I was taking 2.5 grains first thing in the morning and 90% of the time I did so on an empty stomach as i rarely eat breakfast early and that was during the last test result not this one.

Ieas also taking B12, D3, K2 which I stopped at the same time. I slso take HDL with pepsin for low stomach acid.

I was also on the contraceptive pull (which i've also stopped about 2 months ago, though this has nothing to do with wanting another child - I'm too old for that now lol). When I was taking it I would do so at night so that it wasnt at the same time as the NDT.

I'm thinking to restart the NDT but I'm not sure if I should start at a low dose again as I stopped taking it? I'm also wonderingvif I need more than 2.5 grains? I just dont know where to get that info from.

I just wish i had a doctor that would help but unfortunately i cannot change him.

He simply will not look further than the tests being ok as far as he is concerned.

[greygoose in reply to Linac]

I'm thinking to restart the NDT but I'm not sure if I should start at a low dose again as I stopped taking it?

As you haven't taken if for over a month, I think it might be best to restart on 1 or 1 1/2 grains. Then you can increase by 1/4 grain every two weeks.

I'm also wonderingvif I need more than 2.5 grains? I just dont know where to get that info from.

No-one can give you that information with any certitude. You should just keep increasing until you feel well. But, if I were you, I would hold at 2.5 grains for 6 weeks, and then retest. You can continue increasing after that if you feel the need. It's more about how you feel on NDT, with labs for back-up. But, you do need that 6 weeks break from increasing from time to time, to allow the T4 to catch up.

[magsyh]

I agree with Grey goose but what has been overlooked is your very low ferritin level. You need a level of about 80 for your NDT to work yours is scraping the bottom of the barrel! Do you feel unwell trying to raise your NDT? You need some red meat, black pudding and high dose vit c. Don't eat any dairy with your meals. I managed to raise my ferritin very quickly by eating that way. Give it a go and see if you're ferritin rises and you start to feel better.

[magsyh in reply to magsyh]

Oops sorry I see your ferritin is 141 not 14! Then stick with advice from grey goose x