CFS/ME and intracellular hypothyroidism

[clive powney]

I have been ill with ME/CFS for approx.14 years now , going downhill bit by bit for the first 11, having the need to retire on ill health grounds about 8 years ago. I tried a protocol from a book "Recovering with T3" by Paul Robinson. The protocol suggests that T3 is the major issue with many people who have this disease , but is by no means the only answer. Issues with inflammation, iron levels, b12, body temp, reverse T3 and many other measurements and supplements etc need to be resolved alongside using T3.

In my case having followed the protocol I have gone from a 4 on the bell scale to about a 7. I take around 85 mcg of T3 per day in divided doses alongside many other supplements and generally I get on with life quite well. I generally have about 1 bad day a month on average but this is not as bad as most days used to be. I am not "well" and struggle under any stress but am reasonably happy. I cannot take T4. After about 2 to 3 days max it sends me into a flu-like state whereby I cannot stay awake and struggle to get up. I have tried this on 3 or 4 occasions and get the same result.
In my case the t3 protocol is not the answer (but I may not be doing things properly) but it has changed my life SIGNIFICANTLY

 

[pattismith]

@clive powney , thank you for sharing your story with T3, do you know your reverse T3 level when you started the protocol?

 

[clive powney]

@clive powney , thank you for sharing your story with T3, do you know your reverse T3 level when you started the protocol?

hi - my reverse t3 was on the high side of normal, and my free t3 was on the low side of normal. As I understand it, the important thing is the ratio of free t3 to rt3. If your t3 is low and rt3 highish then there may well be a problem. My tsh was under the top of the normal range around 4 and had been hovering between 2.5 and 4 for years. my overall t4 was low also.
Interestingly, I had my thyroid scanned a couple of years ago by an endocrinologist consultant who was shocked to see how poor it looked even though my TSH was not at all bad. He had never had anyone taking so much t3 before and could only prescribe me 30mcg per day, I have to supplement the remainder from abroad

 

[Learner1]

He had never had anyone taking so much t3 before

I've been on as much as 100mcg a day. He probably hasn't looked very hard.

Thyroid hormone helps me function, along with hydrocortisone and nutritional supplements, but is not a cure.

Treating my immune system and infections have been more helpful in making headway in this illness.

 

[clive powney]

I've been on as much as 100mcg a day. He probably hasn't looked very hard.

Thyroid hormone helps me function, along with hydrocortisone and nutritional supplements, but is not a cure.

Treating my immune system and infections have been more helpful in making headway in this illness.

how did you get immune system and infections diagnosed??? I have been pretty much everywhere except to see an immunologist. A way in to see one of these consultants eludes me.

 

[clive powney]

I've been on as much as 100mcg a day. He probably hasn't looked very hard.

Don't forget we are in the UK
What do you treat your immune system with and how was it diagnosed as problematic?

 

[Rlman]

Interestingly, I had my thyroid scanned a couple of years ago by an endocrinologist consultant who was shocked to see how poor it looked even though my TSH was not at all bad. He had never had anyone taking so much t3 before and could only prescribe me 30mcg per day, I have to supplement the remainder from abroad

@clive powney so your TSH isn't suppressed despite taking so much t3? i thought most people taking thyroid hormone have TSH near 0. thanks for sharing your improvement with t3!

 

[Learner1]

Sorry... editing problems...

Don't forget we are in the UK
What do you treat your immune system with and how was it diagnosed as problematic?

It's still difficult to see specialists in the US. The key is to get useful tests run.

Measuring immunoglobulins with subclasses was helpful, as was identifying autoimmunity and infections. There are also tests for NK cells, cytokines and T and B cell complements.

Intravenous immunoglobulins, antivirals, and antibiotics have helped, along with nutrient and hormone support.

The question is what's throwing your endocrine system out of whack to begin with?

Best of luck... This isn't easy anywhere.

 

[clive powney]

@clive powney so your TSH isn't suppressed despite taking so much t3? i thought most people taking thyroid hormone have TSH near 0. thanks for sharing your improvement with t3!

sorry bit of a misunderstanding. my tsh was at this level before t3 even though my thyroid had (according to the consultant) been in quite a poor state for quite a while - I was trying to show that even a tsh with an almost "normal" reading doesn't really mean anything. It was the scan of the thyroid that turned the consultants head.
my tsh is now around 0.02 - 0.2

 

[pattismith]

Although I already started supplementing with a tiny amount of T3, I still can't tolerate Ubiquinol (headache), even though it gives me more energy. It seems that I need to fix the thyroid disruption before I can take ubiquinol safely!
Here what I found interesting ont his field:

Relationships between plasma CoQ10 levels and thyroid hormones in chronic obstructive pulmonary disease.
2005
Abstract
In previous works we demonstrated an inverse correlation between plasma Coenzyme Q 10 (CoQ10) and thyroid hormones; in fact, CoQ10 levels in hyperthyroid patients were found among the lowest detected in human diseases.

On the contrary, CoQ10 is elevated in hypothyroid subjects, also in subclinical conditions, suggesting the usefulness of this index in assessing metabolic status in thyroid disorders.

On the other hand, a low-T3 syndrome, due to reduced peripheral conversion from the prohormone T4, is observed in different chronic diseases: this condition is considered an adaptation mechanism, usually not to be corrected by replacement therapy.

In order to perform a metabolic evaluation, we have studied a group of 15 patients, aged 69-82 ys, affected by chronic obstructive pulmonary disease (COPD), comparing respiratory indexes, thyroid hormones and CoQ10 levels (also normalized with cholesterol levels) in patients with low (group A) or normal (group B) free-T3 (FT3) concentrations.

We found that CoQ10 levels were significantly higher in patients of group A than in B (0.91+/- 0.03 vs 0.7 +/- 0.04 microg/ml respectively); the same difference was observed when comparing the ratios between CoQ10/cholesterol in the two groups (200.16 +/- 8.96 vs 161.08 +/- 7.03 nmol/mmol respectively).

These preliminary data seem to indicate that low T3 levels are accompanied by metabolic indexes of a true hypothyroidism in COPD patients.

Whether this datum supports the need to perform a replacement therapy in such a condition requires further studies.

 

[Rlman]

If You had not any effect after taking T3, either bad or good ones, I would make the hypothesis that you may have some blockage of T3 transporters into cells or T3 nuclear receptors or mitochondria receptors
pollution can block TH transporters, and could be a main or an accessory cause of cellular hypothyroidism .

I took 1 grain of NDT (erfa thyroid) for a week and before that 1 week half a grain and didn't feel any difference at all. i think there is about 8mcg T3 per grain, their website though says 1 grain is equivalent to 25mcg cytomel. @pattismith do you think a person with a normal healthy functioning thyroid would feel a difference in how they feel (like hyperthyroid symptoms) on the dose i took? i tried the NDT bc i am freezing cold and bedroom bound basically, but i think i am colder than hypothyroid people (i sleep with like 8 sweater and 8 duvets on top + heater in winter-it's insane). my thyroid blood tests including tsh, ft3, ft4, rt3 all good.

 

[Wayne]

do you think a person with a normal healthy functioning thyroid would feel a difference in how they feel (like hyperthyroid symptoms) on the dose i took?

HI @Riman,

I can't answer your question on dosage. But from my own experience, the length of time you take a thyroid supplement can make a big difference in being able to discern whether it's is working or not. It took me several months of taking an appropriate dosage to be able to notice a difference and integrate it properly. I was EXTREMELY hypothyroid (TSH > 100), so my case could be an anomaly.​

 

[BadBadBear]

I took 1 grain of NDT (erfa thyroid) for a week and before that 1 week half a grain and didn't feel any difference at all.

You need to give T4 meds (including NDT) at least 6-8 weeks to build up your T4 stores in order to know if it works for you or not. Testing T4 meds for a week or two is an exercise in futility.

After 6-8 weeks at a steady dose, do bloodwork and see if you need to adjust your dose. Titrating T4 meds is a slow process.

 

[Rlman]

You need to give T4 meds (including NDT) at least 6-8 weeks to build up your T4 stores in order to know if it works for you or not. Testing T4 meds for a week or two is an exercise in futility.

After 6-8 weeks at a steady dose, do bloodwork and see if you need to adjust your dose. Titrating T4 meds is a slow process.

If a person was hypot though wouldn't the additional t3 in the NDT affect how the person feels right away?

 

[BadBadBear]

If a person was hypot though wouldn't the additional t3 in the NDT affect how the person feels right away?

Maybe. Its a small amt of T3 in a grain of NDT, something like 10 mcg depending on the brand. So that small dose of T3 alone isn't going to do very much if one only tries it for a short time. Once the T4 builds up and starts converting, it can add about another 10 mcg of T3 per grain (so a grain is going to be around 20 mcg of active thyroid hormone - once there is enough T4 in the system).

10 mcg of T3 a day for a short trial won't necessarily do anything useful unless someone is fairly sensitive to it.

It's just not a fair test of NDT. I consistently see people on this forum not understanding how to use T4, testing it for a short time, and then throwing the baby out with the bathwater and deciding it "doesn't work".

I am posting hoping more people will read up and try to understand how to test and use it, and hopefully find some benefit from it.

 

[Wonko]

It's just not a fair test of NDT. I consistently see people on this forum not understanding how to use T4, testing it for a short time, and then throwing the baby out with the bathwater and deciding it "doesn't work".

I am posting hoping more people will read up and try to understand how to test and use it, and hopefully find some benefit from it.

This doesn't match my experience of NDT.

Within a few days of starting my pain levels dropped markedly, to such an extent that my routine nightly pain meds (a routine/minimum of 2 30/500 co-codamol and 300mg gabapentin, rising to 8 co-codamol, 600 mg gabapentin and 20-30 oramorph when things are interesting) got me mildly stoned, and I was able to come off them completely for several months.

My body decided to switch from going to sleep at 2-3am to falling asleep at 9-10pm, and just dropping off immediately I went to bed, which is not SOP for me. And it was good sleep. I regained temperature control, my HR fell 20 bpm, my appetite normalised. I found I was able to do much more, in a more capable way, both physically and mentally. It was much less easy to provoke PEM, being touched didn't provoke extreme irritation, and many other changes.

NDT had a dramatic effect, in a fairly short time from starting, even with only 1 capsule to start with.

Why? I have no idea, the effects lasted over a year before I "normalised", but as my TSH is only just above 3, my fT3 is mid range and my rT3 is 21 I'd suspect it wasn't directly thyroid related, but it lasted over a year, a bit long for placebo, which generally only lasts a few weeks for me.

 

[Rlman]

Why? I have no idea, the effects lasted over a year before I "normalised", but as my TSH is only just above 3, my fT3 is mid range and my rT3 is 21 I'd suspect it wasn't directly thyroid related, but it lasted over a year, a bit long for placebo, which generally only lasts a few weeks for me.

@Wonko What do you mean when you say you 'normalized'?

 

[BadBadBear]

@Wonko its great that a small dose makes a big difference for you. In my post above, I said unless someone is sensitive to a low dose, which you apparently are. 10 mcg of T3 is about 4 hours worth, so if one cap of 10 mcg worked, then you didn't have a large deficiency.

If someone does have a larger deficiency, though, 10 mcg is not going to do much. For those who need a full replacement dose, it's more likely in the 50-75 mcg range (and some much higher if there is tissue resistance and there are specific genetics for that as well as high levels of hormones that block thyroid (TBG, for ex.)).

My point is that those who don't get an effect right away from a small dose need to wait and give it time to work. If you get an effect right away, then great.

 

[Wonko]

@Wonko What do you mean when you say you 'normalized'?

The NDT stopped doing anything useful unless I took 4-5 capsules a day, and all of my old symptoms came back.

As I only started the NDT to see if it did anything, prior to ordering a relatively expensive, and inconvenient, thyroid panel, it was always my intention to discontinue it before getting that done. When I tried, and I tried on several occasions, the payback was bad, severe PEM, if NDT was addictive I would have said it was really, really bad withdrawal. I'm used to bad PEM, I've had ME for over 30 years, but I couldn't take that for longer than a few days, not when I had a "fix" right in front of me (NDT), and my painkillers barely scratched it. But of course neither NDT nor thyroid hormones are supposed to be addictive.

Once they stopped having an apparent positive effect (the only effect i could get from them was negative by taking more than 6 or 7 a day, I forget precisely how much) I just stopped, with no negative effects at all.

So, I have no idea what was going on, only that they don't take weeks to work initially, at least not in my case

 

[BadBadBear]

Very possible you built up a high RT3 level from the T4 content. I have tried NDT but eventually it makes me severely hypo due to RT3 going up and the small amount of T3 is enough to suppress T4. It takes a while for that effect to happen to me, 4 weeks or so then I crash on it.