For those who take NDT - what dose are you taking? - Thyroid UK

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For those who take NDT - what dose are you taking?

10 Replies

Good evening on New Year's Eve :-)

I haven't posted here for a while, but thought I'd pop in and say hello and also to say a very big thank you to those who run the forum for their time and effort.

I just thought I'd leave this (multi part!) question here. I'm just wondering for those who are taking NDT:-

1. Which brand do you take?

2. How long have you been taking it?

3. What dose are you now taking?

4. Do you split doses? If so what times do you take it?

I'm curious as someone in another forum recently suggested that I'm not taking enough NDT. I started taking it 1st October 2016 and had a pretty rocky time initially due to the doctor who prescribed it giving me not particularly good advice re dosing and also a cortisol saliva test revealed adrenal issues.

But eventually got up as far as roughly 1.5 grains (give or take a few crumbs depending on pill cutting) and have stayed there. On a couple of occasions I've tried to increase just a tiny 'chip' for a few days but had what I believed to be adverse side effects and dropped back again.

I had an NHS blood test 30th November but of course they will only usually test TSH, but they did actually test T4 this time too, but no T3 of course.

Results were:-

Serum free T4 level 14.00 pmol/L [11 - 22]

Serum TSH level 00.31 miu/L [0.25 - 4]

I'm still taking quite a few supplements :-

Vitamin C

Vitamin B Complex

Ashwagandha

Magnesium

Selenium

I was also using a bio identical progesterone cream small amount twice a day since April this year as advised by someone else. But in recent months I felt I was experiencing bouts of low mood which I couldn't seem to shake off. I just wondered if it may have been connected with the progesterone cream as I read that too much could cause depressive symptoms, so I stopped it about 8 days ago. Not sure whether I feel a great deal different but felt it might be good to have a break from it anyway.

I have ordered a comprehensive test kit from popular company while it was on offer with a view to getting it done in early January which will include T3, antibodies and the usual vitamin levels and ferritin.

Previously I was taking Levo 75mcg and couldn't tolerate a dose any higher than that as it caused adverse symptoms.

Just interested to know what others taking NDT take and if any supplements used?

Happy New Year to everyone

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10 Replies
Singoutloud profile image
Singoutloud

To be honest we are all different so doses are really tailored to how we each feel. Some may feel good on one grain but others may need 3 or more. It's an individual thing.

As you're on NDT you really need to have your ft3 tested at the same time as your ft4 as it gives a more accurate snapshot of where you are. Did your doctor know you're on NDT so he could make sure the correct tests were ordered. It's hard to say if you're undermedicated without knowing the ft3 level

Once you have the results of your test kit post the results here and we can take a closer look

in reply to Singoutloud

Hi singoutloud, thanks for your comments. All the GPs in the surgery know I'm taking 'something else' but don't seem to want to know much more as its being prescribed by a doctor in London who they are aware of. They will do tests but TSH and possibly T4 are as much as I could hope for, hence I've ordered another Medichecks test which I will do in the next couple of weeks.

Post your new blood test results on here including FT3 and people will try and help we are all different so, therefore, take different amounts to suit us as individuals.

Jodypody profile image
Jodypody

I started on 2 grains. I now take 2 3/4 in summer and have recently gone up to 3 for the winter. It’s trial and error. I always take it in one hit in the morning. Too much faff trying to split. So far I’ve had armour (became weak) Erfa (not so good) WP 👍. Recently had to take NP as WP have production issues and that’s fine too. What are the side effects you’re experiencing?

phoenix23002 profile image
phoenix23002

Firstly... you should be taking your natural progesterone cream (10 mgs seems to suit most of us) for 10 - 14 days out of the month, not every day. If you still have periods, count the first day of your period as day one. Count to day 10 - 12 and then start applying your cream each day. Apply for 10 - 14 days then stop. Your period should start within a few days thereafter. If you are menopausal, then just pick out any 2 - 3 week period of the month and apply the cream. I apply from the first to the fifteenth just because it is easy to remember. The reason for the break in application is so that our cells remain sensitive to the progesterone. Progesterone can also help to sensitize our cells to all our hormones, not dramatically... but it is there for sure.

As for everyone's experience with NDT, it varies from person to person tho there are some commonalities.

If you are having problems stabilizing your dose of NDT, check out your adrenals (saliva test, not blood) and see if you have low B 12, iron and D 3. Revealing blood tests are the Free T 3, Free T 4, Reverse T 3 and thyroid antibodies. These can show whether you are 'pooling' T 3 (in the blood but not getting into your cells) or whether you may have hashis. Adrenal fatigue can make everything difficult to establish if not impossible until they are righted.

in reply to phoenix23002

Thanks. I did have a saliva test though it was a while back and advice from another forum was that I did have depleted adrenal hence most of the supplements and from a blood test at that time anti bodies were there so I do have hashis.

I'm post menopausal 9 years since last period. My moods have been a little more stable since I stopped the progesterone cream.

phoenix23002 profile image
phoenix23002

Georgina... sounds like you are doing all you can to stay on top of this. Just a note... there is a small sub-group of hypo, hashis sufferers who cannot tolerate NDT because of their thyroid condition and do better with levo (synthroid). Theory is that the body attacks the NDT just as it attacks the thyroid gland. Also, some folks have dropped their antibody numbers by taking selenium (as you are already doing) and going gluten-free in their diet.

chriskresser.com/3-steps-to...

"However, in some cases patients do feel better with synthetic hormones. One reason for this is that a small subset of people with Hashimoto’s produce antibodies not only to their thyroid tissue (TPO and TG), but also to their own thyroid hormones (T4 and T3). These patients do worse with bio-identical sources because they increased the source of the autoimmune attack."

No clue if this may or may not be part of your problem. More lab results might give you some insight.

I have been on NDT for twenty years, living thru the Armour reformulation and the Erfa manufacturing location change and now take WP by RLC Labs. I had a stash (learned to build up my supply the hard way) so am living thru the RLC supply problems at the moment. I started on natural progesterone cream way back when I developed sudden insomnia and found out that progesterone could help cure it. Unopposed estrogen can be a real problem to both our ability to absorb thyroid medication and our response to our other hormones in the body (melatonin... the sleep hormone, for instance).

in reply to phoenix23002

Thanks Phoenix, that's a very interesting point. Before I went on NDT I'd done quite a bit of research about it and remember reading an article about NDT not necessarily being good for those with Hashis as the body may see the NDT as an invader too.

But when I was taking Levo (which was for about 7 years) I never really felt well at all, put on stacks of weight and couldn't increase the dose beyond 75mcg because of adverse symptoms. The 2nd time I tried it, I went into the GP with some odd and worrying chest symptoms. The GP I saw on that occasion threw a bit of a wobbly and asked me to go straight to a walk in chest clinic at the hospital. He called them while I was in with him and I heard him say to them he wanted to rule out embolisms! So I took the time off work and went to the clinic, had blood test, blood gases and ECG done and all fine. When I saw the doctor at the hospital, I asked him could the symptoms I have be due to the Levo increase I'd taken on a couple of weeks or so before and he said definitely yes. Whereas the GP had said no that wasn't possible (but what do GPs know of course) I went to the GPs so many times with various symptoms which I attributed to thyroid and was told on several occasions it was menopause (pointed out I'd been there, done that 9 years before) then told it was my age. Join Slimming World and get out and do some exercise.

After one appointment when my husband was with me he was so appalled, he just said we'll go private. That's what I did and saw a doc in London who after consultation and a suggestion of HRT patches, I eventually got NDT from him. I refused the HRT patches because the info leaflet clearly stated not to be used if you have a 1st degree relative with breast cancer. My sister had breast cancer 3 years prior. Doctor still felt it wasn't a risk, but I wasn't going to risk it. So NDT was the next option.

Also when I ordered the blood test from Medichecks, I was tempted to order a Reverse T3 test at the same time, though that test wasn't on offer and it's £99. I did send Medichecks an email to ask if I might be able to have a discount on that one given I've been a pretty good customer for some time. Not had a reply yet, but I have wondered whether I have RT3 build up perhaps.

Wondering whether to restart the progesterone cream in a while but with breaks this time. I had a female hormone test done via a different doc in London (I switched because of things I disagreed with the first doc on) and it revealed oestrogen dominance as per the doctor's interpretation. Hence he said keep the progesterone cream going to try and counteract it.

I do sometimes get a little confused with some things, just when I think I got it firmly in my head.

Also in October I had some symptoms which are in the heart attack list. My husband took me to A&E and after tests they found I had a raised Troponin level (an enzyme released in the blood when there's something cardiac going on) so they kept me in for 2 nights and I had an angiogram. But arteries were clear (that was good news) so eventually at follow up the cardiologist said they couldn't really say what the issue was. It was termed a non defined cardiac event. They put me on 2 blood thinners and a max dose statin straightaway and I had massive doses of thinners while in hospital too. My cholesterol level had been fine but they thought I may have experienced what they term a 'plaque rupture' and statin is given to stabilise arterial plaque. I have since been able to halve the statin dose and one of the thinners will be going soon, but have to continue with aspirin.

So I'm wondering whether maybe these medications may be interfering with my NDT uptake, though I take them well away from each other.

phoenix23002 profile image
phoenix23002 in reply to

I think you may have hit on something....that is.. these heart medications/blood thinners interfering with your absorption of thyroid meds. I hate thinners and statins (and calcium blockers) but realize sometimes they are necessary.

Why not wait until you come off of some of the medication and see what happens.

For years, I always felt that I needed to bump up my NDT dosage (cold intolerance especially was a problem and low body temp) but I would get heart palps every time I tried. I had tests etc and was checked out by a cardiologist and no problems. Well... I was stumped. Then I read about how every cell in our body has receptors for iodine and the US diet is woefully short of iodine. And this lack of iodine (iodine was removed from bread products back in the seventies and replaced with bromide, a neuro-toxin) has correlated with a rise in thyroid problems in the populace.

Long story, short.... I started taking Lugols iodine (NOT the drugstore variety of iodine for insect bites etc) starting off with low, low doses, taking my time. I hadn't even thought about it alleviating my cold intolerance but after a year or so, that is what happened. I was also able to increase my NDT with no heart palps. I went from 60/90 mgs to. 2.5 grains. One should always do their own due diligence, research and homework when it comes to taking any kind of supplements

in reply to phoenix23002

Funny about the cold intolerance, for some reason I always 'run warm' known to turn up for work with no coat and often a short sleeved T shirt whatever the weather. Our house often feels stiflingly warm and I find myself turning radiators down as my husband is constantly cold and turns them up! I don't seem to get the cold intolerance thing at all. And it's not menopausal as I'm 9 years after last period, but I do sometimes get a feeling which is almost like a flush. If it's not long after I've taken my NDT, I've put it down to the T3 in it

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