Rambling NDT question... :)

[Jazzw]

This is going to be an odd sort of post really, but I've been hanging out here even more than usual lately and been thinking about this thyroid lark quite a bit. I'm currently experimenting with raising my dose, as after 9 months on 2 grains of Nature Throid there have been a growing number of niggly not-quite-right feelings, from feeling very ill again in the mornings to being weirdly emotional. I hadn't realised that I'd stopped crying at everything until I started again...

So all of this has got me paying lots of attention to the boards and I've noticed things that I kind of wanted to know more about. Like, how much NDT do people take to feel well - and is there an amount that more commonly makes people feel very well. I know the standard answer is that it varies - I know that because I've probably given that answer at some point. But I'm not so sure it's true. For example, most people posting here for help and certainly the hypothyroid first time posters are nearly always on less than 100mcg of Levo - in fact, a shocking number have been left on starter doses for years. That smells of medical negligence to me.

It seems that most hypothyroid people need over 100mcg of Levo to feel better - and those who don't have probably just got used to feeling permanently under par. I think maybe those people have always been somewhat hypothyroid so even a small improvement feels miraculous. I don't know that I buy the idea it's possible to support existing thyroid function by adding a small amount of Levo. I'm increasingly sure it doesn't actually work like that. It seems that any amount of Levo, from 25mcg upwards, can switch off the feedback loop between the pituitary and the thyroid, in exactly the same way as taking the contraceptive pill switches off a woman's ovaries. It certainly seems to be the case that most people who are left on that piddly dose feel awful as a result - if it supported existing thyroid function they'd feel better, wouldn't they?

I find myself relieved by contraceptive pill analogy because I didn't think twice about being on the pill in my 20s but I do occasionally worry that taking Nature Throid bypasses my natural, albeit not great, thyroid function. I feel even more relieved when I remember that my main motivation for going on the contraceptive pill wasn't to avoid pregnancy - it was to have some semblance of normality for my periods, which were incredibly irregular and horribly heavy when they arrived. Starting NDT has also given me my life back. I can actually do things without exhausting myself for days.

I digress - but it's something I've wanted to put out there for consideration for a while. Doctors don't seem to think twice about putting young women on the pill and disrupting normal hormone production - but many doctors make people wait until their TSH goes over 10 before putting them on a tiny amount of Levo. That doesn't make sense really, does it? Like the contraceptive pill, it doesn't seem to do irreversible harm to take replacement thyroid hormones (well yes, there is some controversy about that I know but stick with me for now ). I recently found a 1973 study that showed that thyroid function of those given thyroid replacement hormones returned naturally to a premedication state within 2 weeks of stopping thyroid hormone replacement. I found that especially comforting. When you self medicate and effectively go against perceived medical wisdom, you find comfort where you can...

Anyhow... I think all this rambling mostly boils down to the question of - what NDT dose do most people end up on? My gut feel is that most end up somewhere in the 2-4 grain mark - which would probably be higher if one could completely quell misgivings about suppressed TSHs and over range FT3s.

There seem to be 2 schools of thought here on this forum - that you should take however much it takes (building up slowly of course) to feel well, and (possibly 'or' as well) you shouldn't take so much that your FT3 goes over range. Does the however much it takes thing refer to those with thyroid hormone resistance (which as far as I can tell, you can't test for)?

If you've read this far, thank you. I'm hoping I'm not the only one who wonders about this stuff.

[LuxN]

I'm on 5 grains and have been for quite a few years. When I was on Levo, I was on 175mcg and the endo said I had virtually no thyroid function. My doc isn't happy that my TSH is so suppressed and to keep the peace, I've tried cutting down by half a grain on the odd occasion but I invariably end up getting insomnia and having even more trouble sleeping than I usually do (which I know is the exact opposite of what you would expect).

[Jazzw in reply to LuxN]

Again, good to know - thank you

[SilverAvocado in reply to LuxN]

LuxN, Just wanted to let you know that I also struggle to sleep the more hypothyroid I am. One of the main things is tense muscles, particularly painfully tight calf muscles, I found an article somewhere explaining that muscles need energy in order to relax.

[shaws]

I will go back a bit. People used to be diagnosed by their clinical symptoms alone and since 1892 have taken natural dessicated thyroid hormones (before that they died a horrible death). They took thyroid hormones until they felt well and slight adjustments were made. No blood tests were available.

Then in the 1950's Big Pharma produced synthetic levothyroxine, the new miracle thyroid hormone, guaranteed to be better than NDT and cheaper. A big push then went ahead and it was very successful as doctors were paid if they prescribed it and I believe they still do in the USA. Also In the USA Synthroid (levothyroxine) is extremely expensive and good for profits. Plus, of course, the blood tests. Nowadays only levothyroxine worldwide is prescribed (except by doctors who treat more naturally). False statements have also been made about NDT.

We are told we are 'normal' because the blood tests are in the normal range, and anything else that bothers us is due to some other cause so we will have a prescription for the cause but it is really a clinical symptom. if we are somewhere in the 'range' bearing in mind that most feel better when TSH is around 1 or below or suppressed but doctors think suppressed is bad so reduce hormones. Except that thyroid cancer patients' TSH is kept suppressed and I don't think the patients develop untoward diseases. I wonder if a study has been done?

This is how some doctors still do Thyroid Testing and patients recover.

web.archive.org/web/2010103...

There are many people who feel o.k. on levothyroxine but not everyone does.

[Jazzw]

Yes, the idea that's it ok to have a suppressed TSH if you've had ThyCa, but not ok if you haven't is bizarre. I think we've discussed before here that the whole "You'll get AF or osteoporosis if your TSH is suppressed" has come about because of what can happen in the case of untreated hyperthyroidism - where I'm pretty sure it's the effect of having too much T3 that causes those problems, not the suppression of TSH.

But if those problems are related to too much T3, then going up and up on your dose of Armour/NatureThroid/Erfa etc without keeping FT3 in range feels risky. But then we come back around to thyroid hormone resistance, do we? People with hyperthyroidism wouldn't be thyroid hormone resistant, so the excess T3 would cause problems, where as too much T3 caused by over medication might be ok if the hypothyroid person had any degree of thyroid hormone resistance? Or am I making stuff up?

Just thinking that if insulin resistance is real, why not thyroid hormone resistance. Is that why some folk do need lots of T3 and/or NDT to feel well?

[Clutter in reply to Jazzw]

Jazz, The likelihood/danger of thyCa recurrence without suppressed TSH is greater than the risk of developing osteoporosis because TSH is suppressed..

Mary Shoman says the average NDT dose is 3-5 grains. I suspect patients who self medicate will be on higher doses simply because they can titrate until symptoms resolve. How risk averse they are will influence whether or not to dose to within/over range if they're aware of potential adverse effects.

Maintaining thyroid levels within range doesn't guarantee one won't develop AF or osteoporosis, so I would choose to feel well today, even though it may increase the risk of adverse health outcomes in the future.

The Rotterdam study below finds the risk of AF increases 1%-9% for patients <65 with FT4 within the upper quartile of range compared to lower quartile. This appears to be in patients not on thyroid replacement as it says Future studies should determine whether the increased risk of AF is also applicable for

those with high-normal thyroid hormone values due to replacement therapy.

The study finds no association with TSH levels and AF.

press.endocrine.org/doi/pdf...

A meta-analysis of patients with TSH <0.1 found one excess hip fracturer for every 1,000 patient-years.

online.liebertpub.com/doi/a...

[Jazzw in reply to Clutter]

Yes, sorry - the risk of cancer returning definitely outweighs the risk of osteoporosis - didn't mean to imply otherwise.

One excess hip fracture for every 1,000 patient years? Wow. Those are odds I can accept. Plus I used to fall over a lot before taking Nature Throid - so presumably my risk of hip fracture has actually dropped significantly.

[Clutter in reply to Jazzw]

Jazz, I didn't think for a minute you meant otherwise, just pointing out how different risk factors influence treatment ie if cancer recurs and metastasises the probability of living long enough to develop osteoporosis is low/lower.

Lifetime risk of developing AF in Europe is 25%. If high-normal FT4 increases that risk by 9% I don't think that's unduly high. It's so much easier when it's expressed in absolutes like the hip fracture analysis.

[Hidden in reply to Clutter]

....[...Maintaining thyroid levels within range doesn't guarantee one won't develop AF or osteoporosis, so I would choose to feel well today, even though it may increase the risk of adverse health outcomes in the future.....]..

Strong powerful words Clutter and ones I myself, and I assume most others would agree with.

It is a shame we have to make this choice.

Flower

[Hidden in reply to Jazzw]

Yes there is thyroid hormone resistance Jazzw...just like insulin resistance. That's is where the reverse T3 comes in and it gets complicated.

F

[Jazzw in reply to Hidden]

I thought so, thank you. I've reached that stage where I've Googled so much I can't remember quite what I've read and what I've guessed at.

[Jazzw]

Interesting to know, thank you

[greygoose]

I never felt well on any dose of any NDT. In fact, I just got worse and worse and the weight piled on. I went up to 6 grains without ever feeling well. But that's just me. lol

I have come to the conclusion that I must have thyroid hormone resistance - as well as many other complications - but perhaps that's just what you might expect when you're not diagnosed for fifty years. They talk about Graves sufferers always needing higher doses of T3 because their bodies are used to high levels, but what about Hashimoto's sufferers that have had lengthy periods of the hyper phase - which I now know I did? Surely that would also mean that the body gets used to high levels of T3 and therefore needs higher doses of T3 when they start thyroid hormone replacement. I'm on 100 mcg at the moment, but have been higher with no ill effects. If I try to go lower, the weight starts to creep back on. (Although, actually, I think it's very difficult to talk about doses, because at the moment I'm taking Cynomel bought from Mexico and need 100. However, when I was getting my T3 prescribed by my French doctor, I only needed 75. conclusion : 25 mcg French T3 is stronger than 25 mcg Cynomel, which is crazy, and makes talking about dosage dependant on the brand!)

As to the gland stopping working permenantly when you start thyroid hormone replacement, my gland was pronounced dead when I was 61. However, when I was 68, I stopped all thyroid hormone replacement for six months (not going to get into the whys and wherefors. lol) During that time, my poor little gland stepped up to the mark and produced enough T4 to keep me alive - TSH of 35, but still enough T4 that I didn't fall into a coma. And that from a gland that had already been pronounced dead due to Hashi's. So, I do think you're right when you talk about that 1973 study. Doctors that tell patients that if they start taking Levo they'll be on it for life, are just ignorant scare-mongers. But, hey, what's new? lol