NDT dose, no thyroid gland

[Helenca]

I have recently switched (again), this time from t3 only to NDT. I had graves disease and total thyroidectomy, so I’m dependent on my daily dose. I am interested to know the dosages for other members who have no thyroid gland and are on NDT. I’m currently taking 2.5 grains, but this seems low compared to what I see on some other posts. I am 5’8, 160 lbs. I did try to raise my dose to 3 grains, but cut back when I had some episodes of overheating and shakiness (not extreme, just fine tremor). If you have no thyroid and are on NDT, please let me know your dose and whether you have experienced these side effects when trying to increase. Thanks.

[Beverleyb]

I think it depends how you feel on a certain dose, I used to take NDT , I was prescribed 3 grains , I had the same symptoms you describe, I felt best on 2 3/4 , split twice a day....I had my thyroid removed 15 years ago.

[Helenca in reply to Beverleyb]

Thanks for replying. I think you’re right about the dose being dependent on symptoms=, and vice versa.. Mine are a little inconsistent, though. I haven’t lost any weight, in fact have gained (same diet) and I am finally able to sleep since raising my dose from 1 grain 3 years ago to 2.5 or 3 now. Pulse stays around 60. Palpitations actually STOPPED when I increased. Very confusing. The weight gain is why I thought I should try increasing my dose to 3 grains. Many people on this site take nearly twice as much NDT as I do. Of course my doctor is no help at all. Scolds me because my tsh is suppressed. So I’ve decided it’s up to me to Figure it out.

[Hidden]

I have no thyroid gland and take 2 grains of NDT per day in two doses. I am also 5ft 8 inches tall but weigh 138lbs.

When I was taking 2.5 and 3 grains per day I was over medicated because my FT3 blood test was way above the top level. Are you losing weight and what does your blood FT3 result say?

[Helenca in reply to Hidden]

Thanks for your reply. I am actually gaining weight, nearly 15 pounds in the past 2-3 years, but since I went from 1 grain to the 2.5 I have been sleeping all night most nights, a huge improvement. Also no more anxiety. My ft3 is in the upper third of the range, never above range. I have done as suggested on this site, waited 24 hours after my dose to get my blood drawn, so t3 would probably be higher if I got the test done before the 24 hours. Of course, my tsh is way suppressed, but I’ve learned that means very little when you don’t have a thyroid. My daughter, who is a chinese medicine practitioner and acupuncturist, says the pituitary somehow “knows” I don’t have a thyroid, and as long as I have enough hormone circulating in my blood it stops sending out tsh. Just an aside, but thanks again for replying.

[pennyannie]

Hello Helenca

I'm with Graves post RAI thyroid ablation 2005, age 72 and weigh around 90 kilos.

Almost 6 foot with a large body frame, and size 9 shoes.

I started NDT last November and am only on 1 + 1/2 tablets of Thyroid S. which I now understand is slow release.

I had a blood test, for my own benefit, and after 10 hours of supplementing my T3 came in at 7.8. and I had absolutely no symptoms of overmedication, and felt very well.

I plan to take another test after a 24 hour cycle and presume I'll drop back down into the range, but then when on NDT, the blood test range is not the ultimate goal, but wellness, and to dose to relieve symptoms.

If I increase another 1/4 tablet I then feel a bit uncomfortable and anxious, so guess this is my limit at any one time.

I dip a bit in the afternoon, but find no benefit from another dose in the pm.

I have been very unwell for the past 4-5 years, and pretty much housebound.

I am slowly trying to rebuild my life, physical strength and stamina.

I'm still a work in progress, as we all are, but definitely now on the right track.

The NDT has given me back stability, my cognitive function was severely compromised, my brain is now engaged, and my body aches and pains are now minimal.

If you haven't, you might like to take a look at Tired Thyroid by Barbara S Lougheed.

This lady also has the disease and went through RAI thyroid ablation

She expands on introducing T4 back in with NDT and to dose back to what your thyroid originally supported you with, viz, approximately, 100 T4 and 10 T3 daily.

She also suggests to dose T4 to one's weight as a ball park figure as to where you might find, is where you end up, on whatever mixture of thyroid hormones you maybe taking.

Interestingly, this last mathematical equation would put me way over any dose of Levothyroxine I was ever offered in primary care.

I was dosed on TSH blood test and " stuck " with a suppressed TSH - a typical of Graves patient problem, and continually medicated and reduced down with Levothyroxine, despite my symptoms and continued unwellness.

[Helenca in reply to pennyannie]

So interesting! 3-4 years ago I was taking only 1 grain of Thyroid-S and my tsh came back at 13, way too high, of course. I had been losing weight and was down to 132 lbs, with terrible anxiety, insomnia, palpitations, weepy depression, brain fog, etc. Before the obvious hypo results came back, the doctor was convinced I was HYPER, and was shocked when he saw the tsh at 13. He put me on 100 mcg of levothyroxine over my protests, and I immediately developed thyroid eye disease — a real bummer. So after 6 months of that I ordered more Thyroid-S from Thailand (so ridiculous) and started back at 2.5 grains. Actually, that figures out to about 94 mcg of T4, plus about 22 mcg of T3. Should have been too much, but I started putting on weight, sleeping through the night, and lost the anxiety, depression, palpitations, brain fog, etc. The reason I wanted to try 3 grains was the recent weight gain — “Where will this end?” kind of thing. I don’t think I’m really overweight at 160, but would like the gaining to stop. I guess I might have to accept it because I don’t like the tremors or the overheating (although at 74 I think I’m entitle to shake a little, LOL.) Thanks so much for your interesting reply, and I will definitely get that book!

[pennyannie in reply to Helenca]

Hey there,

There is also a Tired Thyroid blog - I didn't realise this until recently ??

Over the last week, there have been several posts on here detailing the link.

I don't know about " copy and paste " and how to get you the link.

This isn't brain fog on my part, simply never been shown how to use this laptop to full advantage !

There have been several post this past week, re T4/NDT and dosage - if you can go back into last week's full postings, I'm sure you'll find some relevant links to research today, save waiting for the book.

[Helenca]

Thanks, I’ll check it out.

[pennyannie in reply to Helenca]

Thinking on,

I started off with Graves Disease and ended up with Graves Disease, thyroid eye disease and hypothyroidism.

I believe thyroid ablation is the very worst treatment option.

The thyroid is still in situ, the antibodies having a field day, and this slow burn destruction goes through the whole body, which is what I've experienced these last 4 years, believing my thyroid actual packed up completely in around 2014 - when the damage started in my gastric tract.

My TSH came back with reads of between 8 - 15 during 2008-20011 - but was only ever on 100 - 125 Levothyroxine throughout 2005 - 2018. I always felt better on 125, but this meant my TSH was suppressed at 0.01 and consequently " told off " by the doctor and dropped back down to 100 ??

I didn't know anything, and just trusted my doctor knew best.

It's quite interesting that Prof Toft has now openly stated the following :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine -131 - or surgery in patients with Graves disease, irrespective of age or number of

recurrencies of hyperthyroidism. "

The full article is on this website : by Professor A Toft the eminent endocrinologist :

Thyroid Hormone Replacement - A Counterblast to Guidelines : December 2017.

[Helenca in reply to pennyannie]

I understand completely. I had my ablation 33 years ago, and have regretted it ever since. To make matters worse, my endocrinologist “forgot” to put me on thyroid replacement for 3 months, and only when I was reduced to a blubbering idiot and my terrified husband called her did she think to prescribe levo. My tsh was 300, and I was rushed to the E/R for a T3 “drip” if you can imagine that! Total incompetence in the endo profession as far as I’m concerned. Thanks for the great research references. This thyroid deal becomes a bit of an obsession, as you know!

[Helenca in reply to pennyannie]

I read the Toft article. Sure wish my endocrinologist could see it, but she probably wouldnt read it.

[pennyannie in reply to Helenca]

Well, I sent the article to both my doctor, who watched me become a " bumbling idiot " and offered me anti depressants, and to the one and only endocrinologist I had seen since having the ablation in 2005.

They both had the article prior to appointments in 2018 but it wasn't discussed.

I was denied a trial of T3 owing to my suppressed TSH.

There was no discussion, and was told I was over medicated because of my TSH despite the fact my T3 was middle of the range, and my T4 near the top.

I found the stress of all this making me more ill, so put simply, decided to stay away, self source and help myself to better help.

Considering I'm with dyslexia, I never expected to become my own doctor. I don't feel I had a choice but to read and reread articles and find my own way back to having some sort of life, outside of my own company.

[Helenca in reply to pennyannie]

Unfortunately it seems we all have to be our own doctors. I order my NDT from Thailand, no rx necessary.

[jjf255]

I'm a little confused Scrumbler...don't you like that Thyroid S is absorbed slower? I find that to be the benefit of it. The T3 is delivered over a longer period of time rather then a sudden burst. I've taken it for sometime now and like the slower delivery of T3.

[Kerrrie]

Pennyannie tour post is exactly why I’m anxious about my forthcoming endo apt. 😢

Helenca - I take 2grains in the morning and 1 (or 1.5) in the afternoon depending on the level of fatigue.

My TSH is 0.05 / T4 is 9.1 and T3 is 4.9

Currently feeling pants, aches pains brain fog chronic fatigue and generally miserable so I think I need a chance he in dose but don’t know where to start!?

I am about to go and order the book

Which was recommended on this thread - if the brain fog allows me to read past the first page 😔

[pennyannie in reply to Kerrrie]

Hey there Kerrie,

I think you can access the Tired Thyroid book today as it's on a bog somewhere ?

I know what it's like when with brain fog - the web might be in easier sections ?

I notice you have a post of your own so, rather than add on to this 7 month old post I'm going to go and look and help on the Dr No one.

[Helenca]

Yes, it has a coating, so I bite it with my front teeth a few times and tuck it under my tongue. It dissolves in a minute or two and disappears into my. Bloodstream. This is the most direct way of taking thyroid meds. I even used to do it with synthroid. But .you have to do it consistently every day to keep your dosage reliable.

[Helenca]

Kerrie,

After 30 years of trial and error I’ve settled on 2.5 grains per day, with 2 in the morning sublingual, and .5 mid-afternoon. Have been feeling great, sleeping (most important for me) and no cold fingers/toes, constipation, anxiety, brain fog, depression, etc. But I do think it’s an individual matter, and you have to work out your own regimen.