Just feel there's no end in sight : So Iv been... - Thyroid UK

Thyroid UK

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Just feel there's no end in sight

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6 years ago•6 Replies

So Iv been unable to find a reliable source of NDT and now I'm back where I started. I initially ordered from Thailand, my doctor was dubious about me trying it and advised against it but I felt I was losing the plot on levo- far from improving my symptoms it just made me more depressed and the exhaustion was out of this world. I then re ordered from a different place in January for my next dose of NDT (was unable to get a reply from previous seller) and I started taking it in late feb, empty stomach, same dose but just didn't feel right. And the weight gain has been phenomenal, over 2 stone in 8 weeks and this has been on healthy diet- gluten and dairy free. Went back to doctors with tail between my legs explaining I feel that what Iv been taking may not actually have been Thyoid s and he takes my bloods. Got the results today and my TSH is 30.1 and my T4 is 5.4. He didn't go into any more details. He's given me 50mg of levo and told me to stick with it and return in 8 weeks. I feel so depressed, sore and just empty of any hope of ever having anything like the normal life I used to have. Doctor seems to think there is something else in my life causing the emotional and depressed outbursts - explained this is not the case but felt I was wasting my breath. I feel like I'm never going to get this under control.

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6 Replies

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SeasideSusieRemembering6 years ago

Annyadoya7

We're not allowed to name sources of supply on the open forum, but did you get recommendations from members for your supplier?

Another question that jumps to mind, have you had thyroid antibodies tested, Thyroid Peroxidase (TPO) and Thyroglobulin (TG). If so we're they raised confirming autoimmune thyroid disease aka Hashimoto's? If not then it would be a good idea to have them tested.

Also, have you had vitamins and minerals tested - Vit D, B12, Folate and Ferritin?

humanbean6 years ago

One thing I have seen happening with people switching types of thyroid meds is that they often get the dose they need wrong. If they were under-dosed on Levo already, and then switched to NDT or T3 and started too low and raised too slowly, they can end up in all sorts of trouble.

Do you have any blood test results from when you were on Levo? What dose were you taking? What dose of NDT did you switch to? And how quickly did you raise dose? Do you have any blood test results from when you were on NDT? How were you monitoring the success (or otherwise) of your dosing?

SlowDragonAdministrator6 years ago

What were your Thyroid results and ranges when on Levothyroxine, before changing to NDT? And what dose of Levo

Good levels of vitamin D, folate, ferritin and B12 are essential. Can you add most recent results and say What supplements do you take

If you have Hashimoto's are you on strictly gluten free diet?

Starting on Levothyroxine at 50mcg, blood will need retesting 6-8 weeks ( and after each dose increase) until TSH is around or just under one and FT4 towards top of range and FT3 at least half way in range. Dose should only be increased in 25mcg steps.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

2 years ago

I just wanted to let you know that I’ve also been through so many trials and tribulations - trying synthetics (all combos) and now NDT. You are not alone, and you will get there. What has helped me is to remember whenever my emotions overwhelm me, is that I need to remain strategic and committed to the data. You may feel cursed, like you’re not allowed to get better but you absolutely are and you’re going to get there!!

Lalatoot in reply to 2 years ago

Relentless what a lovely reply. Unfortunately the person you are replying too is no longer a member. If you see the name hidden it means the person is no longer on this forum.