Some advice: Hi all, I'm brand new here, I've... - Thyroid UK

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Some advice

Itsy profile image
Itsy
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Hi all, I'm brand new here, I've been on levo for over 2 years with typical results.

My labs are 'normal' but I still get fatigued fairly easily which is limiting my exercise & my weight is impossible to reduce.

The brain fog is so annoying but I switched jobs 6 months ago from a pretty active job that was doing me in to an office environment where I'm perceived to be doing well but I know I'm not at my best.

What I wanted to know is who's switched from levo to NDT & what your experiences of that were? I've read some of your posts & also devoured the STTM website so know how to switch sensibly, I wanted more of a personal experience point of view, if you're willing to share, so I have a better idea of what to expect?

Thanks in advance.

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Itsy
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NatChap profile image
NatChap

What do you want to know Itsy? I am happy to share my experience so far :-)

Itsy profile image
Itsy in reply to NatChap

Hi, Thanks.

How long did it take for you feel any change? Have you had some alleviation of your symptoms & which ones? Which ones don't seem to be improving? How long has it been since you switched & how much levo did you take, how many grains do you take now? Basically, has it helped you, was it worth it & what ways?

I'm not expecting miracles but I so desperately want to feel more like my old self. I would say on a good day I can feel up to about 80% for around half a day and on a bad day... Well, I'm sure you know!

NatChap profile image
NatChap in reply to Itsy

I started Thiroyd on March 21st and have had a few 'downs' as I have needed to increase my dose but felt an improvement in my moods after just a couple of weeks. I am now on 2 1/4 grains (I was on 125mcg levo) and have really started to feel a difference this last couple of weeks. It is my mood that has benefited the most, as in I feel generally much happier, like a weight's been lifted..my husband is very pleased ;-) I also don't feel like I need to nap anymore. Before as soon as I woke up I was thinking about when I would be able to squeeze a nap in but not any more. The only thing really that is still a problem is the joint and muscle pain. I am still supplementing vit and iron though so I'm hoping that combined with the ndt I will start to improve in that area too.

Itsy profile image
Itsy in reply to NatChap

That's great & very encouraging, I'm so glad you're improving, after all that's all we want isn't it, to feel ok?!

I am also taking 125mcg & am waiting for my thiroyd to arrive!

Do you split your dose or take it all at once? Are there any warning signs that it's better to do one or the other?

Do you have any experience of needing adrenal support?

NatChap profile image
NatChap in reply to Itsy

I do split doses..about 2/3 first thing in the morning and the rest around 12.30 lunchtime. I started on 1 grain and then increased by 1/4 every 1-2 weeks (never longer than 2). You will know if you're increasing to fast trust me!! I also take it under my tongue. Some people claim it makes no difference or say it should be taken whole with water but I tried that the other week just out of interest and my hypo symptoms started to come back. I haven't felt any symptoms of adrenal fatigue..in my head I now feel 'normal' again..I'm just waiting for my body to catch up :-D

Itsy profile image
Itsy

NatChap i can't thank you enough for your time & advice. I'm so glad that your experience has been positive, it's so encouraging, I hope I have similar results.

I had read about taking it under the tongue so I think i'll defo give that a go since I'll be using the same product.

But while I wait for it to arrive, think I'll invest in a pill splitter & a thermometer!

NatChap profile image
NatChap in reply to Itsy

It's no problem at all honestly..feel free to message me anytime x Yes a pill cutter is a must, I got mine from boots..it is good cause you can keep the pills in it too.

greygoose profile image
greygoose

Itsy, first of all you have to understand what 'normal' is. When a doctor says 'normal', he just means 'in range'. But, 'in range, is not the same as 'optimal'. It isn't enough to just be 'in range', it's where in the range your results fall that counts.

Secondly, what is your doctor testing? If he's just testing TSH and saying it's 'normal', then that means nothing whatsoever. TSH isn't even a thyroid hormone, it's a pituitary hormone. And the tests is extremely unreliable. Let's say, for sake of arguement, that your TSH is 1 - which, at a pinch, you could say was 'normal' - although it may not be 'normal' for you! A TSH of 1 does not guarantee that your FT4 is high enough.

You Don't say how much Levo you're on, but I'll take a guess and say 100 one day, 125 the next - doctors like that alternate thing, it makes them look as if they're actually doing something. So, on that dose, your FT4 could be about... just Under mid-range. Well, that's not high enough. In range, therefore to a doctor it's 'normal', but not high enough for you.

And, even if your FT4 was at the top of the range, that doesn't automatically mean that it's all converting into T3. Your FT3 could still be at the bottom of the range.

So, the first step to getting well is to get hold of your results, and see exactly what he's tested, and what the exact result was. Then, post them on here and people will be better able to advise you.

And, I would just like to say that, despite what STTM says, NDT does not suit everyone. It didn't suit me, it made me very ill and very fat. Especially if you have antibodies. Do you have antibodies?

And, another thing is, if your T3 isn't optimal, you shouldn't be exercising. It won't make you lose the hypo weight, and it could very well make you put on even more. Hypo weight is nothing to do with calories. :)

Itsy profile image
Itsy

Wow, there is so much to take in & the irony being the brain fog is making it difficult!

Thanks for your answer greygoose.

I am indeed in range with my TSH at 3.38 & T4 at 16. I am definitely not optimal though. These are the only tests performed & with that the matter has been rested as far as my gp is concerned, I am to return in a year now my dose is set at 125mcg daily.

I exercise because I've always done it & miss it terribly when I don't, it's a real mood lifter, but it's taking too long to recover, I used to bounce back quite easily but not so much anymore!

I know I don't have much information to offer but it's all I have.

I understand that NDT might not be right for me & that there are other options if it doesn't, but with limited options available right now I thought that perhaps there's little to lose if I try it.

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