Low thyroid?

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80
Seems a lot of us are low thyroid. Normal TSH but real low or barely in range T3 and T4.
Anyone think a trial of T4 could help?
People on Peaktestosterone.com have talked about people misdiagnosed with CFS and actually were greatly improved from a trial of thyroid.
I don’t know if symptoms of low thyroid and CFS are interchangeable and some of us are actually hypothyroid.
 

frozenborderline

Senior Member
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4,405
I think that t3+t4 or t3 only would be more likely to help or at least should be considered... I don't know from personal experience yet though, but lots of people have issue with t4 monotherapy even tho it's standard... the standard treatment isn't always good and it seems like thyroid is an issue where modern medicine doesn't particularly shine
 
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80
Wonder what the level of fatigue is with people that are diagnosed hypothyroid and how it relates to CFS.
For some resson I think the severity of fatigue and weakness is much worse in CFS.
 

ljimbo423

Senior Member
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Wonder what the level of fatigue is with people that are diagnosed hypothyroid and how it relates to CFS.
For some resson I think the severity of fatigue and weakness is much worse in CFS.

I think the fatigue in CFS, for the most part, would be much worse also. My view on the cause of adrenal dysfunction and thyroid dysfunction in CFS.

Is that it is usually caused by a dysfunctional HPA axis, from low grade brain inflammation. There have been a couple of studies that have shown low grade brain inflammation in CFS.

The HPA is the control center for the thyroid and the adrenals. So when it's not working right it can cause many different problems thought-out the body. A dysfunctional thyroid or adrenal gland are just 2 of many.

Hypothalamic–pituitary–adrenal axis

Jim
 
Messages
80
I think the fatigue in CFS, for the most part, would be much worse also. My view on the cause of adrenal dysfunction and thyroid dysfunction in CFS.

Is that it is usually caused by a dysfunctional HPA axis, from low grade brain inflammation. There have been a couple of studies that have shown low grade brain inflammation in CFS.

The HPA is the control center for the thyroid and the adrenals. So when it's not working right it can cause many different problems thought-out the body. A dysfunctional thyroid or adrenal gland are just 2 of many.

Hypothalamic–pituitary–adrenal axis

Jim
So you think thyroid and adrenal dysfunction can be a reason for havin CFS?
My thyroid numbers are borderline hypothyroid and my cortisol levels are not low.
I’m just wondering if some of us are hypothyroid. It just seems CFS is much worse from what it looks like.
 

wastwater

Senior Member
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Doctors have respect for hypothyroidism but in my experience cfs is 10 times worse.
And annoyingly think they have found the problem
 
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Runner5

Senior Member
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I've been reading that a low dose of T3 helps restore a lot of people to full energy with fibro / cfs even when the thyroid tests are within range so I've been interested in that lately although find it doubtful my doctor would give that a shot. If you give it a go, do please report back if it works for you or your experience. :D

(listed fibro first because that was my initial search term)
 

pattismith

Senior Member
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3,990
So you think thyroid and adrenal dysfunction can be a reason for havin CFS?
My thyroid numbers are borderline hypothyroid and my cortisol levels are not low.
I’m just wondering if some of us are hypothyroid. It just seems CFS is much worse from what it looks like.

my T3 has always been in the lower normal ranges, and I benefit a lot from supplementation.

However no one endocrinologist here in my country would give me this medication because my TSH is low, so I have to take it on my own.

If your cortisol levels are high, you may not need it.

In my case, I need cortisol as well, and also B12 and B1 injections.

When I started T3 I thought I had found THE answer to my problems, then I realized it wouldn't work properly without cortisol. When I found that cortisol and T3 where working great together, I thought I had finally got THE answer, and I stopped my B12 and B1 injections....And I went bad again.....

Each supplement you have found that help you a bit or even transiently, that means you need it.

Then you have to take them all together in order to function.

And yes hypothyroidism mostly overlaps with CFS/ME symptoms, but some hypothyroid patients may have more than hypothyroidism (especially if they are not cured with a T4 monotherapy or by a T3+T4 therapy);

Here on PR, lot's of people are treated for hypothyroidism by endocrinologists, and their CFS/ME is not cured
 
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Messages
67
About six weeks ago, there was a Belgian study that showed a subset of ME patients had increased rt3 levels and normal t3 and t4 levels. This 'reverse t3' actually cancels out the t3, giving a functional hypothyroidism that is otherwise undetectable unless you test for rt3 (which few do).

This may be why some patients benefit from t3 treatment.

Some clinicians also think thyroid issues are downstream of more general CNS disturbance in ME. That makes sense to me.

Interestingly, my thyroid results got better after following the Myhill protocol with LDN and Imunovir. I suspect it was possible the iodine, selenium and/or LDN that helped. I went from TSH 3.4 to TSH 1.86.
 
Messages
67
The best thyroid doctors out there note that a comprehensive physical looking for signs of hypothyroidism and a trial of thyroid hormone are the best ways to rule out hypothyroidism. TSH is an unreliable measure; for example, it decreases with age, leading to a reduction in T4 and T3, giving the false impression that because TSH is within range that things are fine. Stress also can lower TSH. There's always the possibility for thyroid hormone resistance. The late Dr John C Lowe had this, and said he was on a dose of T3 that was high enough to cause an endocrinologist to have a heart attack, yet this was the only thing that gave him relief from his intense depression and related symptoms.

Cortisol is needed to get thyroid into cells, but chronic stress, and high cortisol that can go with it, increases reverse T3 levels, which limits the conversion of T4 to T3. I'm skeptical of the claims, such as by Kent Holtorf, that rT3 inhibits the T3 cells, rendering them inactive to some degree, but I don't know how to explain why some people who try T4 feel worse; you'd think that if you increased T4, then no matter how much got converted to rT3, you'd still have at least some that led to increased (free) T3.

Then you have other interactions. A study I've recently come across notes the sharp increase in 2-hydroxyestrone with thyroid hormone. Even though this is the healthiest and anticarciongenic of the metabolites of estradiol, you still need the other two main pathways, 4- and 16-hydroxyestrone; the body has these pathways for a reason (it's through 16-OHE that you create estriol, I think). But what if you have low estrogen in the first place, such as people who are menopausal? Then you already have low levels of estradiol and 2-, 4-, and 16-OHE. Adding thyroid hormone to it, even when it's needed judging by testing, means you're draining estrogen metabolites that are already low away from 4- and 16-OHE even more.

I remember taking DIM (diindolylmethane), which had worked in balancing my estrogen metabolism, but when I took it with higher doses of T4 or NDT or T3 caused me to feel worse in a way that wasn't attributable to hyperthyroidism (more fatigue, brain fog, etc.). Perhaps what was happening there was too much 2-OHE and not enough of the other estrogen/estradiol metabolites.
 

pattismith

Senior Member
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3,990
About six weeks ago, there was a Belgian study that showed a subset of ME patients had increased rt3 levels and normal t3 and t4 levels. This 'reverse t3' actually cancels out the t3, giving a functional hypothyroidism that is otherwise undetectable unless you test for rt3 (which few do).

This may be why some patients benefit from t3 treatment.

Would you give me the link to this study,

I read the study that found low fT3 in a subset of ME/CFS patients, but they didn't find any rT3 abnormality, so I may have missed the one you are talking about.

@Kierkegaard
Concerning rT3 that cancels T3, it is not exactely right.
rT3 doesn't have any effect on the nuclear T3 effect, but rT3 is blocking the T3 non-genomic effect on ion transport through the cells membrans, which leads to alteration of intracellular calcium.

rT3 also goes with high or normal T2 so the cholesterol is usually normal or low in this syndrome.
 

pattismith

Senior Member
Messages
3,990
I remember taking DIM (diindolylmethane), which had worked in balancing my estrogen metabolism, but when I took it with higher doses of T4 or NDT or T3 caused me to feel worse in a way that wasn't attributable to hyperthyroidism (more fatigue, brain fog, etc.). Perhaps what was happening there was too much 2-OHE and not enough of the other estrogen/estradiol metabolites.

I also observed this phenomenon with my T3 trial until I added prednisolone and then B12 inj + B1 inj
 

pattismith

Senior Member
Messages
3,990
Seems a lot of us are low thyroid. Normal TSH but real low or barely in range T3 and T4.
Anyone think a trial of T4 could help?
People on Peaktestosterone.com have talked about people misdiagnosed with CFS and actually were greatly improved from a trial of thyroid.
I don’t know if symptoms of low thyroid and CFS are interchangeable and some of us are actually hypothyroid.
so you said your cortisol is in the high range.

Endotoxin (from gut bacteria) can lower thyroid hormons, and increase cortisol, maybe something to consider in your case?

Inhibition of the Hypothalamic-Pituitary-Thyroid Axis in Response to Lipopolysaccharide Is Independent of Changes in Circulating Corticosteroids
Abstract
We have investigated the role of circulating glucocorticoids in the suppression of the hypothalamic-pituitary-thyroid (HPT) axis following lipopolysaccharide (LPS) injection in rats. Intraperitoneal injection of LPS (2.5 mg/kg) suppressed paraventricular nucleus thyrotropin-releasing hormone (TRH) mRNA, pituitary thyroid-stimulating hormone (TSH) mRNA and plasma triiodothyronine. In these animals LPS also increased paraventricular nucleus corticotropin-releasing hormone (CRH) mRNA, pituitary proopiomelanocortin (POMC) mRNA and plasma corticosterone levels. To investigate the role of plasma corticosterone in the suppression of the HPT axis, we clamped the plasma corticosterone level at morning baseline level by bilateral adrenalectomy and corticosterone pellet implantation.
Ten days after surgery, LPS injection evoked a dramatic increase in CRH mRNA and POMC mRNA. Despite the lack of change in plasma corticosterone in the corticosterone-clamped rats, LPS was still able to suppress TRH and TSH mRNA levels in both corticosterone-clamped and sham-operated rats.
These data indicate that in response to LPS, suppression of the HPT axis occurs and is independent of the LPS-induced increase in plasma corticosterone.
 

ljimbo423

Senior Member
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United States, New Hampshire
So you think thyroid and adrenal dysfunction can be a reason for havin CFS?

No, I think it's just the opposite. I think CFS sometimes causes thyroid and adrenal dysfunction.

Because CFS can cause low grade brain inflammation and that can cause HPA axis dysfunction, which can lead to thyroid and adrenal dysfunction.

My thyroid numbers are borderline hypothyroid and my cortisol levels are not low.
I’m just wondering if some of us are hypothyroid. It just seems CFS is much worse from what it looks like.

CFS can be very mild to severe. Not everyone with CFS will be disabled and unable to work, although many are. I think CFS can contribute to or cause, many autoimmune diseases, hypothyroidism being just one of many.

Jim
 
Messages
67
I also observed this phenomenon with my T3 trial until I added prednisolone and then B12 inj + B1 inj

Hi patti, can you tell me more about your reaction? Also, why were you put on prednisolone, and any chance you had low cortisol as a reason? I had low-normal morning cortisol, and we tried about 30 mg of hydrocortisone in four divided doses and it didn't seem to do anything, but I wonder if I should give it another shot.
 

TiredBill

Senior Member
Messages
335
About a year ago (33 years into ME/CFS) I was found to be borderline-normal hypothyroid. I pushed for therapy (as I was doing poorly, after decades of being mostly "mild.)" That meant treatment with slowly increasing doses of T4 (Levothyroxine). The benefits were mild.

Recently I met with a new Endocrinologist and we discussed adding a little T3 (a generic for Cytomel) to the mix to see if we might add benefit.

I had a terrible reaction. The T3, against my hopes, provoked a bad energy crash. I tried 3 times. I gave up after a few days the first 2 times. The 3rd time I pushed through for a week. Bad mistake. It put me into one of the worst crashes I've experienced in a very long time.

The Endocrinologist was puzzled, so tested Cortisol and an ACTH response test and my levels were fine.

Bill
 
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67
@TiredBill Doctors such as Ben Lynch talk about needing to make sure mitochondria are supported before adding thyroid replacement, or else you end up effectively smashing on the gas pedal with an empty gas tank. He and others recommend PQQ, d-ribose, creatine, carnitine, ALA, and a few others.

I also had a negative reaction to NDT and slow-release T3, though I suspect my reasons could be related to estrogen issues. Either way, I'm planning on trying a cocktail of mitochondrial supplements and *then* adding T4 or NDT to the mix. Worth a shot. When you're looking at feeling worse in a non-hyperthyroid way after adding thyroid meds, this usually means insufficient cortisol (going by numbers alone isn't sufficient, as this doesn't rule out glucocorticoid resistance) or mitochondrial dysfunction.
 
Messages
80
I was gonna push for a trail of T4 because I’m borderline hypothyroid.
I don’t know how much it would help if any. I’m just looking for something different than CFS. My thyroid numbers have always been borderline hypothyroid even when I felt good so I’m thinking i didn’t get sick all of a sudden from those same numbers. My drs think that too.
They say many people diagnosed with CFS are actually hypothyroid. I imagine if your symptoms aren’t that bad that could be to case.
 

pattismith

Senior Member
Messages
3,990
Hi patti, can you tell me more about your reaction? Also, why were you put on prednisolone, and any chance you had low cortisol as a reason? I had low-normal morning cortisol, and we tried about 30 mg of hydrocortisone in four divided doses and it didn't seem to do anything, but I wonder if I should give it another shot.

My cortisol is low normal, but I had already noticed a small dose was helpful (as a one shot) to lower my brain fog and to prevent PEM.

The bad reaction I had when I pushed T3 (three time a day, up to 75 mcg/day) was a worsening of my usual symptoms, nothing to do with hyperthyroidism.
I didn't know I was in need of cortisol: I took some pred one day, just because I needed an extra help for a day, and I got a complete release of my symptoms for 8 hours.
Now I take a maximum of 5 mg of prednisolone a day divided in three/four doses, depending on my needs and it allows me to benefit from my T3.
I did everything on my own, I was leave alone by docs a long time ago, and it took me 1.5 year to come back from hell with my own efforts. I started with 4 months of antibiotherapy, I have the chance to have access to meds.
I didn't take antivirals, but I take Inosine now.
 

Iritu1021

Breaking Through The Fog
Messages
586
Unlike pattismith I never did well on T3 alone, either with or without prednsione. After 4 years of struggle and a lot of T3 and NDT induced problems, I ended up using a completely different method that virtually nobody knows about and that is so unconventional and out of the box that most people even refuse to believe it can work. However it brought me from hell to a pretty good functional level. I used to be mostly bed/bedroom bound for several years, now on a good day I can easily walk 10,000 steps.

It's all on my blog:
www.chronicfatiguediagnosis.com

The bottomline is hypothyroidism when combined with hypothalamic dysfunction is very tricky to treat and requires a highly individualized approach and a lot of persistence - but in the end it's very much worth it.
 
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