Help with replacing levo with NDT please - Thyroid UK

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Help with replacing levo with NDT please

C70rol profile image
14 Replies

Hi, I'm a Hashi's patient and a newbie to this wonderful forum and am seeking advice please. I am in the fortunate position of being prescribed Armour (1grain) by my endo yesterday, but no advice was given(even though I asked) as to how to proceed re,decreasing of levo and adding NDT. I would prefer to start slowly(1/4grain) as I'm very sensitive to meds. I have been on levo for 4years, the last two of those on 62.5mcg, plus a 'Biotics Research' supplement called GTA which contains 2.5mcg dried pig gland. (I take 2 a day). However I have not been well for most of each year, since starting the levo regime.-poor sleep, tight heads, no energy, poor stamina, blood sugar problems, etc. also the right hand side of my T.gland is a bit puffy. But I assume that's due to under medication? Endo didn't seem bothered.

Blood results are:- T4 19.4 (12-22). TSH 0.04 (0.27-4.2).T3 5.4(3.1-6.8) and B12. 710(180-800). Ferritin 99(25-300). Folate 18.7(3-20). Vitamin D is to follow apparently in 3 weeks time!

Although my thyroid results seem to me to be in range, from experience I have only ever felt well if my T4 result is around the 25 mark! -

A private testing last year on T3 read:- Blood 3.24 (2.1-4.2). But the urine result was 409 (800-2500). So what's happening there? By the way my endo told me that the NHS doesn't recognise the D102 test!!!

I hope I haven't gone on too much, but do hope one of you very experienced, knowledgable people may be able to guide me on this troublesome journey !!!!!!

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C70rol
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Clutter profile image
Clutter

Welcome to the forum, C70rol.

Usual advice is to start with half a grain and increase in half grain increments. Quarter grain is bioactively equivalent to 18.75mcg Levothyroxine (T4).

Week 1: Reduce T4 to 37.5mcg and add quarter grain NDT.

Week 3: Reduce T4 to 12.5mcg and increase to half a grain.

Week 5: Stop T4 and increase to three quarters of a grain.

Week 7: Increase to 1 grain.

Your thyroid results don't indicate undermedication. TSH is low, FT4 in the top quadrant of range and FT3 very healthy in the top third of range. B12 and ferritin are good levels. The puffiness in your thyroid may be due to a goitre. Has your endo examined your throat and neck?

I haven't seen anyone able to interpret urine thyroid results on the forum.

Your endo's hospital may not recognise the DIO2 test but other NHS endos and hospitals do :)

C70rol profile image
C70rol in reply to Clutter

No, your right my blood results don't indicate under medication. But I must say that for some reason August is the one month of the year when I do feel so much better. My energy levels are very low, plus the other symptoms I've mentioned. The rest of the year is a different picture. I must also add that I was put on Armour years back which did suit me and gave me the energy I don't get with levo. But I came off when there was problems with Armour!!!

The NHS and the D102 comment came from my endo, so I assumed it was true?

Clutter profile image
Clutter in reply to C70rol

C70rol, it may be true for the hospital/CCG in your area but it is accepted in some NHS hospitals. A lot of GPs tell patients FT3 isn't tested on the NHS but it is in many areas.

I hope your energy levels and other symptoms improve when you're on the right dose of NDT.

C70rol profile image
C70rol in reply to Clutter

Forgot to say Clutter that my endo did examine my neck and didn't seem concerned. And thank you so much for the chart for the switch over to NDT.

The doctor who did the blood and urine test for my endocrinology is Dr George's Mouton who was one of TUK recommended doctors, at the time I started with him. I don't think he is anymore as he has more patients than he can cope with, plus a long waiting list !!!!!

Hypoguy profile image
Hypoguy

I don't understand this – I've read so many conflicting things about straight T3 treatment. Even if you only convert a little, wouldn't NDT still be the preferred choice? Straight T3 seems like a harsh treatment.

C70rol profile image
C70rol in reply to Hypoguy

Thanks for your comment hypo guy, I tend to agree with you. I tried straight T3 (Cytomel) and it really made me feel quite ill and very very nauseous. So I stopped it. Armour agreed with me, when I took it some years back. I had energy, sleep and a good sense of well being, plus some physical symptoms went. But I came off when Armour had its problems.

Clutter profile image
Clutter in reply to Hypoguy

Hypoguy, Adding T3 to Levothyroxine or using NDT overcomes lack of conversion. T3 only isn't harsh treatment. It's 3 x stronger than Levothyroxine but the short half life may mean 3 x daily dosing is required. Some doctors think thyroid patients will find that unduly onerous.

Glynisrose profile image
Glynisrose

I stopped my levo for 2 weeks before starting NDT simply because levo, being T4 alone has a life of several weeks that is it stays in the system for several weeks. So were I you I would follow the protocol of ditching the levo for at least 2 weeks then beginning the NDT at a low dose ( say 1/4grain) and building up till you are on your proper dose (which may not be what your doctor expects!)

Clutter profile image
Clutter in reply to Glynisrose

Glynisrose, If anyone follows that advice they'll become extremely hypo while the NDT builds up. Why would anyone need to clear T4 before switching to NDT which is T4 and T3? The reason to start NDT low and slow is a) to see how they tolerate the T3 and b) so as not to miss their 'sweet spot' by overshooting if they increase dose too quickly.

Glynisrose profile image
Glynisrose in reply to Clutter

Wot rubbish you talk? T4 would be overlapped ifyou didn't stop the levo first. Its rubbish to say you don't need to, you will not end up with problems its the quickest and easiest way.

Clutter profile image
Clutter in reply to Glynisrose

Glynisrose, Don't be so rude. You're entitled to disagree but don't tell me, or any other member on this forum, we're talking rubbish.

C70rol profile image
C70rol

Hi Reallyfedup,

I was put on Armour some years back and it did give me the energy ,and minus the other symptoms, plus I slept well on it. But I came off when there was the problems with Armour. I think I must convert some T3 from T4 as looking at my blood results there is a good T3 figure, considering the only product I use (Biotics Research GTA) is an over the counter supplement, which wouldn't be as effective as T3 on it's own or in NDT, I wouldn't think?

Clutter profile image
Clutter

RFU, the T3 in NDT will give a poor converter T3 they need and will stimulate better T4 to T3 conversion. The proportions of T4:T3 don't suit everyone though and they may need to add T4 or T3 to it. Synthetic T4+T3 work for me but the proportions of T4:T3 in NDT won't work for me.

C70rol profile image
C70rol

Wow Clutter,

I am now rather confused by the remarks made to you on your advice to me. though I have to say I was intending to follow your conversion procedure as it makes sense to me, especially as a large chunk ofT4 is deleted when adding in the NDT. and I have followed your comments on this forum with interest and they always appear knowledgable and professional.

I don't think I would feel too well if I had to stop everything for a fortnight either. When I read that suggestion I felt a tad vulnerable. I'm short of energy etc as it is!

I want to feel that I'm secure and right in what I'm doing so that 'post' has rather thrown me !

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