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CFS/ME and intracellular hypothyroidism

pattismith

Senior Member
Messages
3,958
@BadBadBear

thank you for your precious informations from your experience.:)

I feel my temperature is much higher since I started T3!

You said it was a long road to find the optimum T3 dosage for you, I wonder if some of the symptoms I have will resolve with the T3 treatment (maybe you had it and you can answer me):

Tinnitus (ringing in the ears)
earing impairment
dysgueusia (weird taste)
 

Rlman

Senior Member
Messages
389
Location
Toronto, Canada
@BadBadBear i actually am not sure whether the cold body issue is thyroid related or not but am considering a t3 trial to find out. in fact i've never read of anyone who was hypothyroid needing as many layers as me, so that's why i not sure its thyroid. but since i havn't found any other cause so far t3 is probably worth a try. i once asked an ND if his thryoid patients wore so many layers he said no. thanks for sharing your experience with t3 and your symptoms before/after, i really appreciate it.

That is a good point of whether body intentionally making body such a cold temp or its caused by thryoid or something else. i am thinking the latter atm.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
@BadBadBear

thank you for your precious informations from your experience.:)

I feel my temperature is much higher since I started T3!

You said it was a long road to find the optimum T3 dosage for you, I wonder if some of the symptoms I have will resolve with the T3 treatment (maybe you had it and you can answer me):

Tinnitus (ringing in the ears)
earing impairment
dysgueusia (weird taste)

My tinnitus did not resolve at all. Don't know about the othr but not sure if they are hypo or dysautonomias?

On the negative side, my body now reacts with energy sometimes when I am sick with much worse palpitations or high heart rate, which I never had when hypo. I have tried to manage those things by decreasing thyroid and going slightly hypo but that feels miserable, too.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
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)
This is something to be very concerned about. A ferritin level over 400 should be investigated.

When mine hit 605, my doctors sent me for a CT scan and tested a bunch of cancer markers to see if my cancer was back. Fortunately, it wasn't.

Then they thought it was my viral and bacterial infections sitting in my liver, which was difficult to test for, so they treated the infections.

However, I also noticed on my 23and me results that I had one SNP for two different HFE genes, giving me a milder version of heriditary hemochromatosis, the most common genetic defect in the US. It hadn't been a factor before my hysterectomy, but without monthly bleeding, iron built up. People with 2 copies of the main hemachromatosis gene notice it much earlier and its worse in men.

A hematologist warned that I was at risk for multiple organ failure if I didn't get it treated, and he said that it alone could be causing much of my fatigue.
Iron overload can lead to hemochromatosis without the presence of other disease factors. Lesser levels of iron overload, even in individuals whose ferritin and/or transferrin saturation levels range only toward the upper end of normal laboratory ranges, can result in free (or non-transferrin bound) iron that will catalyze the cycling of free radicals resulting in the tissue damage often associated with chronic diseases.

This iron-mediated disease process is associated with iron levels well below those observed in hemochromatosis and has been implicated in multiple metabolic disorders, the worsening of many disease conditions, and premature death and disability.

A summary of several iron overload affected diseases and conditions follows:
  • Atherosclerosis and other cardiovascular diseases
  • Metabolic syndrome
  • Cancer (multiple visceral types)
  • Type 2 diabetes and related microvascular damage leading to end stage kidney disease
  • Osteoporosis and osteopenia
  • Hepatocellular cancinoma with or without cirrhosis of the liver
  • Sarcopenia (muscle wasting)
  • Hepatitis C virus
  • Non-alcoholic fatty liver disease (NAFLD)
  • Non-alcoholic steatohepatitis (NASH)
  • Alzheimer's and other neurodegenerative diseases
The solution was to have 250ml of blood removed every 3-6 weeks until my iron level came down, and then maintenance phlebotomies every 3 months. My main doctors want me to keep my ferritin between 60 and 100 - they said mitochondria won't work properly if its below 60.

To look for this problem, you'd want to have an iron study done, consisting of TIBC, UIBC, serum iron and iron saturation, as well as serum ferritin. These are helpful resources:

http://www.irondisorders.org/

https://www.hemochromatosis.org/
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My tinnitus did not resolve at all. Don't know about the othr but not sure if they are hypo or dysautonomias?

On the negative side, my body now reacts with energy sometimes when I am sick with much worse palpitations or high heart rate, which I never had when hypo. I have tried to manage those things by decreasing thyroid and going slightly hypo but that feels miserable, too.
Tinnitus can have other causes. Have you looked into your methylating nutrients?
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
@Learner1

I am aware and have ordered an iron panel. ATM I am just regarding it as a nonspecific inflammation marker, the chances of it being more than that are apparently only 10%, and the iron panel should give me the info needed to determine that one way or the other.

Thank you for your concern but ATM I am on top of it (well I will be as soon as I am well enough to actually get outside and do the iron panel ;))
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Tinnitus can have other causes. Have you looked into your methylating nutrients?

I do use methylation supps.

The only thing I found that affected it was VNS laser - I had only one treatment, and that night my tinnitus made a whistle like a tea kettle winding down and went quiet for a few days! I have not tried it again as I noticed no other improvements. I may purchase a VNS Tens unit with an ear clip at some point and try that. :)
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Learner1

I am aware and have ordered an iron panel. ATM I am just regarding it as a nonspecific inflammation marker, the chances of it being more than that are apparently only 10%, and the iron panel should give me the info needed to determine that one way or the other.

Thank you for your concern but ATM I am on top of it (well I will be as soon as I am well enough to actually get outside and do the iron panel ;))
Glad you're on top of it...

I had over a dozen doctors of different specialties voice concern over ferritin as low as 250. Normal people have levels below 150.

My ME/CFS specialist encouraged me to deal with it as he said the chronic/reactivated infections I had used it for food. In particular, chlamydia pneumoniae loves it.

Ferritin does not belong in serum. Its a sign that something is wrong. The good news is that finding the reasons may lead you to treatment that reduces ME/CFS symptoms.

Attached are some articles I found helpful in figuring out the cluster of issues causing mine and getting treatment that's helped. If you're already familiar with them, great! But I included them in case someone else is in the same boat.
 

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  • iron overload in human disease.pdf
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  • chlamydia Iron accumulation.pdf
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  • serum ferritin inflammation.pdf
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Wonko

Senior Member
Messages
1,467
Location
The other side.
@Learner1 Our health system (the NHS) says that if I am overweight, which I am, or diabetic, which I am, then anything below 1000 can be ascribed to that and ignored.

Wonderful world we live in eh....

I am aware that 1016 is a bigger number than 1000 lol

ETA - thank you for the papers, I will work through them as I am able :)
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I certainly didn't mean to insult your math skills. ;) I enjoy your comments and learning from you.

Hope you enjoy the papers and can do some strategic armtwisting to get good help. Best wishes...:thumbsup:
 

frozenborderline

Senior Member
Messages
4,405
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 Found this enlighting study after I changed my avatar (but I couldn't find a better one !)

In vitro assay shows that PCB metabolites completely saturate thyroid hormone transport capacity in blood of wild polar bears (Ursus maritimus).

Abstract
Persistent chemicals accumulate in the arctic environment due to their chemical reactivity and physicochemical properties and polychlorinated biphenyls (PCBs) are the most concentrated pollutant class in polar bears (Ursus maritimus). Metabolism of PCB and polybrominated biphenyl ether (PBDE) flame-retardants alter their toxicological properties and these metabolites are known to interfere with the binding of thyroid hormone (TH) to transthyretin (TTR) in rodents and humans. In polar bear plasma samples no binding of [125I]-T(4) to TTR was observed after incubation and PAGE separation. Incubation of the plasma samples with [14C]-4-OH-CB107, a compound with a higher binding affinity to TTR than the endogenous ligand T(4) resulted in competitive binding as proven by the appearance of a radio labeled TTR peak in the gel. Plasma incubation with T(4) up to 1 mM, a concentration that is not physiologically relevant anymore did not result in any visible competition. These results give evidence that the binding sites on TTR for T(4) in wild living polar bears are completely saturated. Such saturation of binding sites can explain observed lowered levels of THs and could lead to contaminant transport into the developing fetus.
soo if you have some kind of blockage of t3 absorption/transport, what should u do?
 

pattismith

Senior Member
Messages
3,958
I did, everything was normal range if i recall.

is it advised to supplement with lithium orotate as well as t3?

I always had TH in the normal range, although I was suffering with the Low T3 Syndrome, and this syndrome has shown recently to affect a subset of CFS patients, so first you have to look properly into your thyroid panel to see if you may be concerned by it.
A rT3 test must be associated to the thyroid panel to do a proper investigation of it.

Are you low on cholesterol?
 

frozenborderline

Senior Member
Messages
4,405
I always had TH in the normal range, although I was suffering with the Low T3 Syndrome, and this syndrome has shown recently to affect a subset of CFS patients, so first you have to look properly into your thyroid panel to see if you may be concerned by it.
A rT3 test must be associated to the thyroid panel to do a proper investigation of it.

Are you low on cholesterol?
is rT3 something that can be run at a normal doctor's office?


anyway my thyroid panel from this summer is probably not ideal b/c i'm far sicker now, but until i get my recent labs in front of me (so much bullshit to just get my labs from my doctor), it'll do (i was still sick then, so if thyroid is the cause, it should show up then)
TSH 1.71 mIU/L
fT4 1.4 ng/dL
fT3 3.7 pg/mL


I know recently my tsh went above 2 but i don't know about the other parameters
 

frozenborderline

Senior Member
Messages
4,405
is rT3 something that can be run at a normal doctor's office?


anyway my thyroid panel from this summer is probably not ideal b/c i'm far sicker now, but until i get my recent labs in front of me (so much bullshit to just get my labs from my doctor), it'll do (i was still sick then, so if thyroid is the cause, it should show up then)
TSH 1.71 mIU/L
fT4 1.4 ng/dL
fT3 3.7 pg/mL


I know recently my tsh went above 2 but i don't know about the other parameters
when i insert it into SPINA, i get this result
 

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frozenborderline

Senior Member
Messages
4,405
Yes, LabCorp has it. Mine used to be quite high which is how I started on T3. Infections and other stresses can send it up.

Where did you find SPINA? What do you make of your result?
a sort of physiology/pharmacology nerd told me of it, and even ran my values when i kept forgetting to do it. what do i make of it? there is evidence that it works, just from a cursory look. Part of me (the part that's interested in ray peat) says that thyroid blood tests are inadequate anyway. but another part of me thinks that at least it prompts a closer look at bloodwork. My doctors never looked at the ratio, just that everything is technically in the normal range, which seems like bullshit. having endocrine modelling systems like this seems like a great thing.
 

frozenborderline

Senior Member
Messages
4,405
a sort of physiology/pharmacology nerd told me of it, and even ran my values when i kept forgetting to do it. what do i make of it? there is evidence that it works, just from a cursory look. Part of me (the part that's interested in ray peat) says that thyroid blood tests are inadequate anyway. but another part of me thinks that at least it prompts a closer look at bloodwork. My doctors never looked at the ratio, just that everything is technically in the normal range, which seems like bullshit. having endocrine modelling systems like this seems like a great thing.
oh, what do i make of my result. Well, the TTSI is out of range, although not by that much, but it technically indicates https://en.wikipedia.org/wiki/Thyroid_hormone_resistance I guess. there are a few ways of treating that from browsing the research but the main one seems to be triac https://www.ncbi.nlm.nih.gov/pubmed/2753985

just posted all this stuff here in case anyone else could get interesting results (only takes a sec to plug in yr results once u download)

triac is probably easier to obtain than suramin and less toxic, so while it may be a moonshot, it seems worth it for people that have hypothyroid symptoms and normal thyroid levels... i'm going to try t3 first, then t3 and lithium orotate, and then if those don't work, triac