NDT Dosage: Can anyone suggest appropriate NDT... - Thyroid UK

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NDT Dosage

tyronecvc profile image
10 Replies

Can anyone suggest appropriate NDT dosage, THF listed below. All my other measures within range except TPO antibodies which have stayed around 500.

Have been on 50mg Levothyroxine since 12/15 and 75 since 2/16 which hasn't made any difference to how I feel.

11/14 - 5.55 THF, 8/15 - 7.88, 9/15 - 4.36, 11/15 - 4.73,

2/16 - 6.73, 4/16 - 5.62, 6/16 - 7.19

Tyrone

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cjrsquared profile image
cjrsquared

Not sure what THF is do you mean TSH?

tyronecvc profile image
tyronecvc in reply to cjrsquared

Yes, Typo...

SeasideSusie profile image
SeasideSusieRemembering

Unfortunately tyronecvc there isn't enough information for anyone to suggest a dosage, you need FT4 and FT3 tests as well. TSH results aren't really relevant where dosing is concerned.

Have you got any recent results for FT4 and FT3, with reference ranges?

tyronecvc profile image
tyronecvc in reply to SeasideSusie

FT4 11-14 (range 12-22), FT3 4-4.8 (range 3.1- 6.8).

SeasideSusie profile image
SeasideSusieRemembering in reply to tyronecvc

tyronecvc Which is your last result?

tyronecvc profile image
tyronecvc in reply to SeasideSusie

Hi Susie,

Latest result is TSH - 7.19, FT4 - 14.5, FT3 - 4

Tyrone

SeasideSusie profile image
SeasideSusieRemembering in reply to tyronecvc

Hi tyronecvc Is your GP testing you periodically and adjusting your Levo dose if necessary on results, as he should?

Are all your TSH results Blue Horizon tests or are some NHS? If NHS your GP is being grossly negligent in keeping your TSH that high, you've not put the ranges but a lot seem to be above range comparing them to usual ranges we see.

The ranges you've given above would seem to be Blue Horizon so I assume those latest results are Blue Horizon tests too, so based on that -

FT4: 14.5 (12-22) - that is 25% through range and should be in the upper third so 19+

FT3: 4 (3.1-6.8) - that is 24% through range and should be in the upper quarter so 5.9+

For good conversion FT4:FT3 ratio should be 4:1 or less, yours is 3.65 so you are converting.

So you can see you are grossly under medicated and your conversion is reasonable.

Based on the above, I wouldn't jump into self treating with NDT at the moment. An increase in Levo to a dose that alleviates your symptoms could very well be the answer.

A lot of people do very well on Levo, some need Levo plus T3, some T3 alone, some NDT. We are all different and have different needs. However, if Levo suits and keeps you well, it is the easiest and cheapest (free) solution and you have the support of your GP.

Once you get on the 'self-treating with NDT gravy train' a common scenario is that your GP will no longer take any responsibility for your thyroid health. Therefore besides having to source and pay for your NDT, you will have to have regular private thyroid function tests as it is important that FT3 does not go over range.

So first of all, see what Dr Toft, past president of the British Thyroid Association and leading endocrinologist has to say in his Pulse Online magazine article:

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

If you email louise.warvill@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP, discuss it with him and ask for an increase in your Levo which will bring your thyroid test results in line with those recommendations and alleviate your symptoms. If your GP wont play ball, I would request a referral to an endo (ask Louise to email you the list of thyroid friendly endos and ask for a recommendation from members of those in your area). If your GP is going by TSH alone, and leaving you with such a high TSH, then he doesn't seem to know what he is doing.

I see from previous posts that you know you have Hashimoto's. Have you gone 100% gluten free? Are you taking a selenium supplement? Both are recommended to try to help reduce the antibody attacks.

One tip for blood tests, if you don't already know. Always have the blood drawn at the earlist possible time in the morning, first appointment at the surgery. Do not take thyroid meds for 24 hours. Fast (water only, so no food since the night before) so have breakfast when you get home, thyroid meds when you get home too. Always try and get your blood drawn at the same time each time you go, then you have a like for like comparison. TSH is higher early in the morning, before food, and lower in the afternoon. You want your TSH as high as possible if you are looking for an increase in your meds.

One other thing, are all your vitamins and minerals at optimal levels? This is essential for your thyroid hormone to work properly. You need

Vit D

B12

Folate

Ferritin

Not just in range but optimal and members can advise on that. See if your GP will test them, he wont know they're connected to thyroid health and as long as they're even just one point within range he will say 'normal'. That's not good enough. If you can't get your GP to treat, then they come as part of a couple of Blue Horizon's thyroid packages. Post results in a new thread and members can advise.

tyronecvc profile image
tyronecvc in reply to SeasideSusie

Hi Susie,

Thanks for the detailed reply. Tests were a mix of Genova, Blue Horizon and NHS - having NHS done every 3 months but don't think my doctor has much idea. He referred me to surgeon before who I got to refer me on to an Endo, but the Endo wouldn't see me. Doctor has agreed to refer me to an Endo again but is very slow here in N. Ireland.

Am concerned about the Levo because it gave me indigestion from day 1. I actually got progressively more ill over 6 months and ended up losing 2st in a few weeks. Am managing it now with a restricted diet - but was thinking NDT might suit my system better. Also Levo has not reduced my TSH at all so am not confident taking more would help. I was hoping my antibodies would come down after I changed diet and could give up the Levo but after 8 months there has been no reduction.

Think I'm doing all the right things on diet and supplements, plus have had a battery of tests and they came back fine. Will e-mail Louise as you suggest.

Thanks again, Tyrone

SeasideSusie profile image
SeasideSusieRemembering in reply to tyronecvc

tyronecvc It looks like Levo might not suit you. Maybe it's the fillers. There are different brands you can try, check them out here thyroiduk.org.uk/tuk/treatm...

And it might be that NDT suits you better. There are a few different brands and again they have different fillers so it's a case of seeing which one suits best. There are a couple of supposedly good brands which seem to go down very well with some members, and are cheaper than the more well known brands like Armour or Erfa and don't need a prescription, but they do have to come from overseas. If you need details feel free to ask.

I hope you find an good endo from Louise's list, don't forget to ask if members have any experience of the one you choose.

tyronecvc profile image
tyronecvc in reply to SeasideSusie

Thanks again Susie, will try and work it so I can stay NHS and get on NDT and see if that makes any difference. Off to see an Aurevedic doctor tomorrow - there has got to be some way to get my antibodies down.

Tyrone

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