To: TSH110

[Rosebud1955]

Can you please kindly send me the link you mentioned regarding transitioning from Levo to NDT. I could not see the link on the site.

Much appreciated.

[helvella Administrator]

If you wish to attract a member's attention you can mention them - see here:

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TSH110

[Rosebud1955 in reply to helvella]

Thanks for the info, sorry, I’m not that savvy with technology, just learning slowly!

[TSH110 in reply to helvella]

Thanks helvella I’d have missed this request if you had not alerted me 😉

[TSH110]

Quite honoured to be displayed in a post headline 🤣🤣🤣

This is the link

tpauk.com/main/article/trea...

I hope it works, have PM’d it too

As I said I’d reported the link glitch to HU - they claim they are on to it but it hasn’t had much effect so far!

[humanbean in reply to TSH110]

I've read that link before (it is quite old and is dated from 2014).

I've always had my doubts about some of it, the following segments particularly (my bold) :

4) For most people, they can stop taking synthetic Thyroxine (T4) one day, and the following day replace it with NDT, but for others, who may well have stressed adrenals, it is best to stop taking any thyroid hormone replacement for at least a week and start treating with adrenal supplements.

...

Day One taking quarter of a grain (15mgs) in the morning and quarter of a grain in the afternoon and stay on this for 7 days.

Personally, I think quite a lot of people would do badly dropping all their T4 in one go, particularly for a whole week and particularly if their dose of Levo was quite high. And dropping all their T4 and switching to quarter of a grain of NDT twice a day could be catastrophic for some people even though the dose is raised after the first week.

The suggestion to take adrenal supplements during that week is also suspect from my point of view, and is only good for people with low cortisol. It would be dreadful advice for anyone with high cortisol.

Personally, I think people should stay on their T4 but drop the dose down as they raise the level of NDT, reducing dose of T4 by 25mcg per day for each 1/4 grain of NDT added to the daily dose. They might still feel grim for a while but at least they would still have some thyroid hormones and would cope.

[TSH110 in reply to humanbean]

It’s what I did, so I can’t say if it would have made any difference to me if I had just gone cold turkey and onto NDT. I was too ill to even go down the adrenal road even now I don’t really understand all the adrenal stress arguments it just did my head in trying to get a handle on it.

I took the view that if the thyroid hormones were optimal and similar to what our thyroids made in health (NDT is the nearest thing to what we once naturally produced) other corrections would automatically follow and not to get worked up about what I felt were side issues, secondary to my main problem.

I think much of it must be based on how NDT was dosed to reach an asymptomatic state of being when it was the only medication available.

All I can say is I had a pretty trouble free swap over using their suggested titration dose and timings. I think it better thought out and explained than anything else I have seen, even if it was published in 2014. I’ve read some much more enlightened articles nigh on 100 years old than some of the rubbish that’s published these days on thyroid disorder and its management. I think the founder of TPAU died, so not sure how much momentum there is now it may be more of an archive these days. Do you know of a better guide out there? STTM have one, but I regard them as too far the other way, kind of fundamentalist NDTers if you get what I mean.

Although T4 is supposed to have a long half life, I must admit when I finally got a diagnosis and was prescribed some (I was in a pretty dire state had gone completely bonkers and had very hideous and scary symptoms by then like terrible and very frightening hallucinations, I really don't think I could have survived much longer, the cold was like freezing to death in the artic and I thought I’d had it) I was given a measily 25mcg because I had had serious angina, but even after just one dose I woke up - much to my amazement as I had believed I was a gonner that night - and was a tiny bit warmer, so even a tiny dose like that did something to me in 12 hours. I react super fast to medications in my experience and according to 23&me. Perhaps I was wise to keep taking the levo and swapping 25mcg for a 1/4 grain.

[humanbean in reply to TSH110]

Yes, Sheila Turner died in 2019 after a serious stroke a few years before.

I always think of my experience in 2013 switching from T4 to T3. I was (sort of) using that article on NDT as inspiration. And of course I had heard all about the supposed dangers of T3, so that made me wary too.

I switched from 100mcg of T4 to 2.5mcg of T3 twice a day. I couldn't walk, and couldn't remember my vocabulary either, and struggled to talk. As a result I increased my dose of T3 rather quickly (I won't say how quickly - I would shock everyone). Unlike all the warnings about T3 being bad for the heart etc, I actually had chest pain before treating myself, and taking T3 got rid of it. I discovered eventually that my chest pain was caused by very, very VERY low iron. I had to treat that myself, because my ferritin was in range but low in range so my iron levels were considered to be okay. (My serum iron was below range.)

[TSH110 in reply to humanbean]

That is very interesting.

I had hideous angina at first it was a few attacks that went away for a decade then another cluster which I went to the doc about had tests told it was just something older women get because of hormones - did he mean hypothyrodism ? No further action required 🙄. It got a lot worse as I became really ill and the zenith of my heart pains was on Levothyroxine. They greatly reduced when I started NDT. I still get pains but very rarely nowadays. I had no idea lack of iron could cause heart problems too. I always have it at the back of my mind as a few relatives have croaked from heart attacks, some much younger that me, some around the same age but I guess you have to die of something eventually! And of course some relatives have not had heart problems at all even though they probably deserved it!

[humanbean in reply to TSH110]

Rather than arterial blockages in the heart, as you would expect from a heart attack, I think the chest pain with very low iron might be caused by muscle spasm - but I wouldn't swear to it. I had also been losing increasing amounts of blood from a GI bleed for a long time, so I may have had hypovolemia too.

Apparently, low iron can cause tachycardia (which I still get and now can't get rid of), heart failure (which I didn't get) and chest pain generally (which I did get but it has gone).

[TSH110 in reply to humanbean]

You have been in the wars. I hope you feel much better now.

I never had tachycardia, my heart rate was c55 walking around - very low. It’s speeded up a lot since I was treated now it’s about 30 beats faster per minute despite doing lots of exercise. It takes forever to warm up when I’m running. I used to be able to rev it up in seconds from 55 to 191 which I could easily hold for a half marathon, now it can take 15 -20 mins before it will elevate to what I’m aiming for as I huff and puff and waddle along. It will still go over 200 if I go completely flat out once warmed up. No idea why it’s changed to this. I have high blood pressure (143/70) so may be that’s causing it. I am taking betteryou iron spray and notice an improvement in my fingernails (they are still terrible) my last blood test showed it was not optimal but it wasn’t deficient. Perhaps it will help the ticker too.

[humanbean in reply to TSH110]

Isn't having a heart rate of 200 absolutely terrifying? I get very concerned when mine goes up to 160!

[TSH110 in reply to humanbean]

Nah it can do 212 tops running & 211 tops cycling. It doesn’t feel odd at all tho I suppose it’s a tad uncomfortable going flat out I couldn’t keep it up long over 202.

[Rosebud1955 in reply to TSH110]

Thank you very much for the info!

[Rosebud1955 in reply to TSH110]

Thanks very much for the info, much appreciated!