CFS/ME and intracellular hypothyroidism

[Wonko]

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.

That would be my conclusion if it wasn't that my TSH is so "low" at 3.01, several months after stopping.

 

[BadBadBear]

That would be my conclusion if it wasn't that my TSH is so "low" at 3.01, several months after stopping.

Why would that indicate anything one way or the other about RT3?

 

[Wonko]

Why would that indicate anything one way or the other about RT3?

If the NDT was acting to supply T3, when I was taking it several months ago, and that was the reason for the benefits, that presumably indicates I needed more T3, which "should" have raised my TSH.

If it stopped working because the T4 in the NDT was converted into enough rT3 to block the additional T3 supplied in the NDT then my TSH should have gone up in the interim, especially given I haven't used NDT for several months.

So, as my TSH is not significantly raised (at 3.01), but my rT3 is near top of range (at 21 when top of range is 24) it seems likely NDT is of no further use to me, and that when I stopped my rT3 would have been likely to be higher (because of the T4 in the NDT) , whilst my TSH would have been lower(due to the NDT supplying T3 and T4), which is why it stopped working.

It makes perfect sense to me, if my logic is wrong please point out why.

ETA - I should probably mention, and it may even be relevant to this thread, that I have a quite high ferritin level (1016 - top of range is 400), and this can apparently "cause" insulin resistance (I am also T2 diabetic), I suppose it's possible it could also affect my cells ability to absorb other things as well. High ferritin levels are an inflammation marker, oddly my hsCRP (another inflammation marker) is not elevated (at 3.4, top of range is 5.0)

 

[BadBadBear]

My T3 or T4 will go low, or my RT3 goes up with no apparent relationship to TSH. My TSH was never higher than 2 even when T4 was below range. I have never found TSH to be a helpful indicator of anything in my case.

Especially since T3 can suppress both TSH and T4 - I gave up on even testing TSH while on T3 unless my doctor specifically asks. It has not been my experience that needing more T3 raises TSH. My TSH gets suppressed at around 25 mcg T3 intake, but I am significantly hypo until I take around 60-70 mcg daily.

Did you ever try T3 only to reduce the RT3?

 

[pattismith]

@Wonko
I do agree with @BadBadBear ,

If your ratio fT3/rT3 is low, with T4 and TSH in normal ranges, you should take T3 only.

Taking Thyroid Hormons supresses TSH (by negative feedback on hypothalamus/pituitary axis), so I don't understand why you expected any rise of TSH...

 

[Wonko]

@BadBadBear
No, my only option is to source T3 from abroad (I'm in the UK and our health service doesn't believe T3 is necessary, and that everyone can convert T4 into T3 effectively), and NDT was much easier, and cheaper, to get, given at the time I was simply after a trial to see if it made a difference.

@pattismith
I didn't expect a rise in TSH, when I was taking NDT, however I haven't taken NDT for several months, and my TSH has not risen to levels that would suggest I actually need, or indeed needed, NDT (or any other method of taking thyroid hormones), which leaves the reason why NDT had such a dramatic effect a bit of a mystery to me.

 

[pattismith]

[USER=30313]@pattismith
I didn't expect a rise in TSH, when I was taking NDT, however I haven't taken NDT for several months, and my TSH has not risen to levels that would suggest I actually need, or indeed needed NDT (or any other method of taking thyroid hormones), which leaves the reason why NDT had such a dramatic effect a bit of a mystery to me.[/USER]

TSH rises only if you are hypothyroid, which I suppose you are not if TSH is in normal range.
This doesn't mean you won't benefit from supplementing with T3, but in this case taking T4 also may be counterproductive if it converts to rT3, (for example because D3 is over activated or D1 is inhibited).

I am in this case and I benefit only from T3 (I am euthyroid, my thyroid tests are in the normal range, only my rT3 is high)

Edit: If D3 is over activated, it may create a lack of T3 in some brain cells because D3 converts T3 to 3.3-T2 in some brain cells

 

[Rlman]

My TSH gets suppressed at around 25 mcg T3 intake, but I am significantly hypo until I take around 60-70 mcg daily.

that's interesting that you @BadBadBear feel better only after 60-70mcg T3 while @pattismith feels better with only 6.5mcg. Maybe PattiSmith is less hypothyroid to begin with?

 

[BadBadBear]

that's interesting that you @BadBadBear feel better only after 60-70mcg T3 while @pattismith feels better with only 6.5mcg. Maybe PattiSmith is less hypothyroid to begin with?

I wish I could feel better on a low micro dose! My doc made me go up very slowly on T3 since my adrenals were shot, and I started at 3 mcg and worked up super slow.

After I was doing well on 75 mcg T3 and stabilized for a long period of time, I tried switching to a T4/T3 combo and that failed (RT3 went up). Had to go back on T3. A year later I tried switching to NDT, and RT3 went up and T4 bottomed out. Went back on T3.

Last year I tried dropping my T3 dose to 12.5 mcg T3 and letting my body make the rest of my T4, and it just *wouldn't*. I went super hypo, lost my hair, and had major blood pressure issues.

T3 always fixes my low blood pressure issues, and once I went back on a replacement dose last Fall I got better.

Wish I didn't need it, or didn't need a full replacement dose. I don't have Hashi or Graves, just CFS thyroid weirdness.

 

[Rlman]

@BadBadBear did you have abnormalities on your thyroid hormone levels before starting hormone replacement? i know you said your tsh was always below 2, even when ft4 was below range. was the low t4 before starting hormone replacement? and was your ft3 level low?

 

[BadBadBear]

@BadBadBear did you have abnormalities on your thyroid hormone levels before starting hormone replacement? i know you said your tsh was always below 2, even when ft4 was below range. was the low t4 before starting hormone replacement? and was your ft3 level low?

Starting out I had low T3, normal mid range T4, and TSH was less than 2. T3 was in range but at the low end. I had severe hypo symptoms, severe BP issues, and was mentally coming unglued. T3 saved my life.

But I was not optimal until I could tolerate the higher dose. I was so sick that it took a long time to build up.

T3 to me still feels fairly rough and harsh. I would get off of it if possible, bht am extremely grateful for the option of taking it. I will undoubtedly try to discontinue it again if I get into a remission from the Famvir treatment.

I am hopeful that if my viral load decreases it may not be needed, or at least a small dose would suffice.

 

[Rlman]

@BadBadBear did you start feeling improvements in your symptoms even when on the lower doses of T3 as you were titrating up? or was it only when you reached the higher end of the dosage that you started noticing improvements in your symptoms? also do you take hydrocortisone as well?

btw me personally: ft4 mid range, ft3 mid range, tsh is below 3 and usually below 2 (in one lab even below 1). i am freezing cold though and very weak (too hard to stand for more than a few seconds even) but so far haven't had other hypothyroid symptoms so far like weight gain, slow pulse, losing eyebrow hairs etc. its already 7 years, maybe i should try a t3 only trial

 

[pattismith]

Starting out I had low T3, normal mid range T4, and TSH was less than 2. T3 was in range but at the low end. I had severe hypo symptoms, severe BP issues, and was mentally coming unglued. T3 saved my life.

But I was not optimal until I could tolerate the higher dose. I was so sick that it took a long time to build up.

I too doesn't feel optimal with a low dose T3, but I can feel a huge difference.

It's amazing that our thyroid tests are very similar:

I am an Euthyroid CFS/ME patient with

fT3 = 1.9 pg/ml (1.88 - 3.18) = 2.92 pmol/l (2.88 - 4.88)
fT4 = 1.01 ng/dl (0.7 - 1.48 ) = 13 pmol/l (9.01 - 19.05)
TSH = 0.97 µUI/ml (0.4 - 4)

This test is considered fine by endocrinologists (because TSH is low), you are lucky that yours gave you a T3 treatment.

I think that I am over sensitive to T3 because I am ill for so long, 35 years!
The first time I went to an endocrino because I wanted my thyroid to be tested, I was in my first year in high school (don't know the name in english for it), and I was 20 years old (30 years ago)... He said it was fine, but unfortunately I didn't keep the result...

 

[BadBadBear]

@BadBadBear did you start feeling improvements in your symptoms even when on the lower doses of T3 as you were titrating up? or was it only when you reached the higher end of the dosage that you started noticing improvements in your symptoms? also do you take hydrocortisone as well?

I was not a cortisone candidate as my cortisol was mixed with low in the morning and high at night... so I didn't go that route. I do use Paul Robinson's circadian dosing method and take my first T3 dose in the early morning - around 4 AM - to boost adrenals. That helps me a lot.

My mental symptoms of hypothyroidism improved drastically even on the smallest dose of T3. The rest of it improved as the dose went up. I got so much better in the first year.

btw me personally: ft4 mid range, ft3 mid range, tsh is below 3 and usually below 2 (in one lab even below 1). i am freezing cold though and very weak (too hard to stand for more than a few seconds even) but so far haven't had other hypothyroid symptoms so far like weight gain, slow pulse, losing eyebrow hairs etc. its already 7 years, maybe i should try a t3 only trial

Do you have low body temps? Are you on hydrocortisone? If so, you might read into Paul Robinson's method and see if you think it could benefit you.

 

[BadBadBear]

It's amazing that our thyroid tests are very similar:

Yes, I looked at my old labs and my numbers when I started T3 were exactly the same pattern.

This test is considered fine by endocrinologists (because TSH is low), you are lucky that yours gave you a T3 treatment.

I found my way to an Integrative MD who was willing to treat by symptoms more than numbers, and she saved my life. I don't think I could have gone on with the mental issues of hypothyroidism much longer. I had tried two YEARS of therapy and what the conventional docs recommended, only to get worse and worse.

I think that I am over sensitive to T3 because I am ill for so long, 35 years!
The first time I went to an endocrino because I wanted my thyroid to be tested, I was in my first year in high school (don't know the name in english for it), and I was 20 years old (30 years ago)... He said it was fine, but unfortunately I didn't keep the result...

We are so alike. I was taken to the doctors for thyroid testing for the first time at 15 years - 32 years ago. I was living in a severely stressful household, and I slept all the time. I'd come home from school and go to bed. I think I probably had my first EBV flare or possibly my initial case of mono, and I was sick for years after that. Of course, my TSH was 'fine' then.

Isn't it amazing how we have survived, really?

 

[pattismith]

Yes, I looked at my old labs and my numbers when I started T3 were exactly the same pattern.



I found my way to an Integrative MD who was willing to treat by symptoms more than numbers, and she saved my life. I don't think I could have gone on with the mental issues of hypothyroidism much longer. I had tried two YEARS of therapy and what the conventional docs recommended, only to get worse and worse.



We are so alike. I was taken to the doctors for thyroid testing for the first time at 15 years - 32 years ago. I was living in a severely stressful household, and I slept all the time. I'd come home from school and go to bed. I think I probably had my first EBV flare or possibly my initial case of mono, and I was sick for years after that. Of course, my TSH was 'fine' then.

Isn't it amazing how we have survived, really?

I can imagine your life because mine was a long nightmare with crashes all along, (only one year of therapy for me), yes I believe you, we are real survivors.

My very first symptoms started like yours at about 15, but were very mild, so nobody paid any attention, I fighted alone.
How much like us are fighting and losing at the end?
We are the lucky ones!

That said, I am not surprised that you were not saved by an endocrino...I think it is a real shame that this Low T3 Syndrome is not taken seriously by them and treated accordingly before the situation goes out of control...

 

[Rlman]

My mental symptoms of hypothyroidism improved drastically even on the smallest dose of T3. The rest of it improved as the dose went up. I got so much better in the first year.
Do you have low body temps? Are you on hydrocortisone? If so, you might read into Paul Robinson's method and see if you think it could benefit you.

Yes i have low body temps, though because i wear so many sweaters they are higher than they would be if i wore the amount of shirts a person normally would. at night my oral temp is 96.7F approx (35.7 Celcius) even with all my sweaters. axilla temps would be even lower. I trialled HC (hydrocortisone) for 2 months at 20-25mg dose, didn't feel anything from it really. but i think i may need it if i try the t3 protocol. Thanks for the tip re the Paul Robinson protocol.

 

[BadBadBear]

Yes i have low body temps, though because i wear so many sweaters they are higher than they would be if i wore the amount of shirts a person normally would. at night my oral temp is 96.7F approx (35.7 Celcius) even with all my sweaters. axilla temps would be even lower. I trialled HC (hydrocortisone) for 2 months at 20-25mg dose, didn't feel anything from it really. but i think i may need it if i try the t3 protocol. Thanks for the tip re the Paul Robinson protocol.

Early mid afternoon temp should be highest and ideally around 98.6. Evening temps and night temps can drop as part of normal rhythm.

Are you anemic or low in ferritin?

 

[Rlman]

Early mid afternoon temp should be highest and ideally around 98.6. Evening temps and night temps can drop as part of normal rhythm.

Are you anemic or low in ferritin?

I am aware of the above temp highest in day lowest at night, but they are still too low at those times, i'm 96.8 with 8 sweaters on as PJs. if i just wore one PJ as a normal person does i would likely be way colder! and i have heater on in room unlike rest of family. and they have one light pj on, me 8 sweaters, 8 duvets , 2 wool blankets underneath. i have hemoglobin at high end of range and ferritin is normal.

 

[BadBadBear]

I am aware of the above temp highest in day lowest at night, but they are still too low at those times, i'm 96.8 with 8 sweaters on as PJs. if i just wore one PJ as a normal person does i would likely be way colder! and i have heater on in room unlike rest of family. and they have one light pj on, me 8 sweaters, 8 duvets , 2 wool blankets underneath. i have hemoglobin at high end of range and ferritin is normal.

The real question is - does your body just regulate your temperature to be that low no matter how much you wear or don't wear, or is it really just not able to generate heat?

I get you about being cold. I am still always under a blanket to watch TV, and I have my recliner set as close to the fireplace as possible. At some point, mine won't generate more heat regardless of how much T3 I take (and if I take too much, I feel awful).

That said, I am not as cold at night now that I'm on T3. When I was hypo, it could not generate heat.

It's good you are not anemic - if you do try T3, it will likely work better than it would for a person who is anemic. I had low iron when I started, and that is part of the reason I had to go really slow with it.