Having to go off NDT after several years and ba... - Thyroid UK

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Having to go off NDT after several years and back on levo only - how to explain it?

•18 Replies

OK, so I went off NDT and back on T4 only a few weeks ago, after suffering bothersome symptoms for several months, such as profuse sweating (waking up every morning in a bed drenched in sweat), racing heart, high blood pressure (treated with perindopril 10 mg daily, GP wants to switch me to beta blockers if my heart rate won't come down from 95 bpm), nervousness/aggressiveness, increased sugar cravings and having clammy skin most of the time. I tried to adjust my NDT dose but ended up taking T4 only as any amount of NDT seemed to cause hyper symptoms.

During the years I spent on levo only (2000-2011, diagnosed with Hashi's in 2000), I was a notoriously poor converter. Back then, I did not know what I know now, but looking back at old labs I can see that my FT3 levels were barely midrange even on 200 mcg of levo daily (with FT4 at top of range). That was the reason I decided to see a so called Hertoghe doctor in Belgium who put me on NDT back in 2011.

Of course, during the years I took levo only, I had no idea about the importance of optimising vitamin and mineral levels to improve T4 to T3 conversion, so that may have been part of the problem.

I did great on NDT for years, taking as much as 6 grains daily with no ill effects whatsoever.

After being treated with high doses of steroids for autoimmune encephalitis in late 2018, I ended up with high cortisol levels x 4 (confirmed by Genova saliva stress test which also showed bottom range DHEA).

That explained why I had not been able to fall asleep until 3 am or to get a whole night's uninterrupted sleep.

After asking for advice here, I decided to try Adrenal Strength by MegaFood. It contains holy basil, ashwangdha, rhodiola rosea and L-serine, along with vits B, C and selenium.

Since I started it, I notice feeling less agitated and I can now fall asleep at night and sleep through the night.

But if it helped with some symptoms, such as increased agitation and poor sleep quality, others remained, the most bothersome being racing heart, profused sweating and sugar cravings that not even prescription drug Victoza could control.

I have been trying to find a link between high cortisol and thyroid hormone. Most articles talk about low cortisol (adrenal fatigue) and how that makes it impossible for thyroid hormone to enter the cells. But there are not as many articles about high cortisol and thyroid...the STTM talks about "pooling of T3" in people with high cortisol, but I am not sure how reliable that info is TBH.

Based on my latest labs, my hormone doctor raised my Oestrogel from two pumps a day to three, and told me I could go up to four if needed, and also told me to take 100 mg of Utrogestan every night instead of 200 mg ten days a month.

However, estrogen raises TBG (thyroid binding globulin), so it's common to feel more hypo when on HRT, not the other way around. My thyroid hormone needs seem to have decreased substantially even on higher doses of estrogen.

Although I am doing OK on T4 only for now (I notice the energy on levo only is quite different, no sudden jolts of energy like on NDT, but smoother energy levels lasting throughout the day), I have been trying to understand what is happening to me. I know it's normal for hormone needs to change throughout our lives, but in my case this change happened so suddenly, literally within a couple of months, and also in a very dramatic way. For a long time, I was convinced I had found the right drug for me (NDT), and that all I'd need to do would be to adjust the dosage according to symptoms. Now, it seems I cannot handle any amount of T3.

I have been working on correcting several vitamin and mineral deficiencies (vit D, vit B12, magnesium, zinc, iron, and folate using supplements recommended here along with chicken liver capsules), and that could possibly explain why I need less T3 (provided T4 to T3 conversion has improved as a result).

But I cannot help but wonder how common it is for someone to feel great on a given type of drug for years, then suddenly no longer being able to tolerate it?

My latest labs on 3 grains of NDT daily showed FT4 0.7 (0.7-1.5) and FT3 2.7 (1.7-3.2) so not overmedicated according to those results. Going lower than that would cause my FT4 levels to drop below range, and raising it would most likely push my FT3 levels over range.

I have been reading the book "Tired thyroid" by Barbara S. Lougheed, which claims that T4 is not merely a storage hormone but has a role of its own in the body. According to this theory, low or below range FT4 levels would cause symptoms regardless of FT3 levels. However, many people on NDT have low or below range FT4 levels and feel absolutely fine. Not to mention people on T3 only...!

This book also claims that taking too much T3 (and this does not necessarily mean having above range FT3 levels, just taking too much T3 relative to T4) causes insulin resistance which I have been diagnosed with. I connected it with the steroid treatment, but maybe the T3 in NDT made it worse. That could possibly explain why the problem did not go away after I weaned off the steroids after six weeks.

The book says that the T3/T4 ratio in NDT is unnatural for humans, and that taking NDT only risks leaving us FT4 deficient with excessive FT3 levels. The solution is to combine low doses of NDT with T4 to achieve what the author calls "human levels" as opposed to those found in pigs. However, she also says that when taking T3, the body decreases T4 to T3 conversion as less endogenous T3 is needed, and increases T4 to rT3 conversion. Even if rT3 is not as problematic as once thought, this would still mean less available T4, so I am not sure how adding T4 to NDT will raise FT4 levels. It would seem that any amount of T3 taken by mouth causes the body to increase T4 to rT3 conversion, so I am having trouble understanding that theory. But I was impressed to read how the author improved her health and achieved symptom-relief taking mostly T4 and a little NDT. If T4 only does not work out for me in the long run, I might try that approach rather than NDT only.

I know some members take NDT and T3, but would imagine some take NDT + T4? I would be interested in hearing about your experiences.

The interesting thing is that, while most of my symptoms are indicative of hyperthyroidism, I have noticed increased brain fog which is more of a hypo symptom, and wonder if this could be the result of low FT4 levels.

I know the T3/T4 ratio in NDT is not ideal for everyone; however, it suited me just fine for years, which tells me there has been a major shift in my hormone needs. I am now trying to figure out what could have caused this.

Any ideas?

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18 Replies
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MichelleHarris profile image
MichelleHarris

That is all very interesting. I am just contemplating trying Levo again with a little NDT. Also someone has just posted that she does this x

DoeStewart profile image
DoeStewart

Hi Cat68, I tried NDT but found it too much for me, got palpitations and headaches. I take 100mg prescribed Levo so I added half grain NDT to this - that has also been too much for me so I now take 1/4 grain with my Levo and this seems to be suiting me. I have a Medichecks blood test and will do the test in another 4 weeks( I will have been taking the dosage for 6 weeks then) My body appears to like the Levo but can only tolerate the very small amount of T3.

FancyPants54 profile image
FancyPants54• in reply toDoeStewart

Don't forget to adjust the timing of your T3 the day before your test. 8/12 hours before the test, not the 24hrs you need to leave for Levo. So that day you will take Levo 24hrs before your test and wait to take your 1/4 grain until much later.

• in reply toFancyPants54

I took 1/4 grain at 8 pm and had the test at 8 am the next day.

DoeStewart profile image
DoeStewart• in reply toFancyPants54

Thanks for the reminder 😊

• in reply toDoeStewart

Did your symptoms appear right away after your started takingNDT? What puzzles me is that I did great on it for years before hyper symptoms appeared, even on much lower doses than I used to take. Like my body needed it at some point but then it ended up being too much for me...

DoeStewart profile image
DoeStewart• in reply to

I stopped the Levo and started the NDT as per advice I was given on the site. Started on 1/4 grain for 2 weeks, that was fine, then half grain for 2 weeks, that was ok too but I did feel a little odd. Once I tried to go up to 3/4 grain I got the headaches and palpitations. I carried on for a week to see if I would stabilise but I felt really ill. I decided to stop the NDT and get back on Levo, it only took a couple days and the unwelcome symptoms had disappeared. I waited a few weeks and after more research discovered that some people take small amounts of NDT with their Levo, that's what I am trialling now and seems to be working fine, just hope it carries on.

• in reply toDoeStewart

Yes, I experienced the same thing; that is, that the most bothersome symptoms disappeared within a couple of days which is consistent with the short half-life of T3.

I might try adding very low doses of NDT at a later stage. I read about a doctor (I think his name was Blanchard) who recommended 2 mcg of T3 for each 100 mcg of T4 (so a 98:2 ratio as opposed to the 80:20 ratio in NDT). That would equal adding 1/4 grain of NDT to to 88 mcg of T4.

DoeStewart profile image
DoeStewart• in reply to

Yes I read that article too, it goes against most of the other information I had read were the suggestion was high doses of T3 added to the Levo. The 1/4 grain is obviously giving me a bit more T4 and a tiny bit of T3. I had 7/8ths thyroid removed over 30 years ago and have been on just Levo ever since. Be interesting when I see what my thyroid test comes back like?

• in reply toDoeStewart

Yes, please post them here!

DoeStewart profile image
DoeStewart• in reply to

Will do, am away 18th March for a week so will get them done on my return

humanbean profile image
humanbean

racing heart

increased sugar cravings

Do you succumb to your sugar cravings? If you do your blood sugar will rise and this can cause tachycardia (fast heart rate).

It's a simple experiment to try for yourself whether high blood sugar is affecting your heart rate.

There are lots of possible reasons for fast heart rate in someone with thyroid problems, so high blood sugar might not be a cause for you.

• in reply tohumanbean

Sometimes, yes, unfortunately:-(

What you say about sugary foods and increased heart rate is interesting, I did not know that, thanks for sharing!

humanbean profile image
humanbean• in reply to

I found out the hard way - personal experience. I have sugar cravings too. When I finally twigged that the sugar and the fast heart rate were connected a few light bulbs went on. :D

I did experiment (and still do) with the occasional tub of ice cream to prove it to myself. :)

• in reply tohumanbean

Well, at least I hope you enjoy it while it lasts...no point in punishing yourself twice:-)

humanbean profile image
humanbean

the STTM talks about "pooling of T3" in people with high cortisol, but I am not sure how reliable that info is TBH.

I'm fairly sure that the idea of "pooling of T3" has been debunked.

• in reply tohumanbean

Yes, me too. I read about it in more detail, and the idea behind it does not seem to have much scientific support. It's basically the same phenomenon seen in people with adrenal fatigue, only called something different. But the idea is that thyroid hormone cannot enter cells as long as cortisol levels are too high or too low.

Meanbeannyc profile image
Meanbeannyc

Did your insulin resistance subside after switching back to levo only?

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