Low thyroid (t3) a result of CFS? And, does supplementation help?

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As CFS'ers, are we more prone to lower thyroid levels, specifically t3 (and maybe t4), especially the longer we are ill? And if the CFS is the cause of the lower hormone levels, does supplementation do anything? I also read an article that people who have chronic illnesses often develop lower t3/t4 levels because the body is adapting to the illness and attempting to conserve energy. And that sometimes in this case, supplementation can be harmful. Any thoughts on this?

I am curious to know people who have tested low t3 (or t4) but normal TSH and supplemented hormones and what the outcome of supplementation has been for them?

I recently tested my thyroid for the second time since becoming ill about 14 months ago and my T3 low was but everything else in normal range. I first tested my thyroid 5 months after becoming ill and it was all in normal range, so it has dropped over the course of the illness.
 
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Byron Hyde says thyroid issues occur often in pwME, but later in the disease.

"Endocrine Dysfunction: This feature is common and tends to be a late appearance and is most obvious in the: a. Pituitary-thyroid axis: This is common. Changes in serum TSH, FTI, FT4, Microsomal Ab., PTH, Calcium and phosphorus rarely occur until one or more years after illness onset and usually only after several years. This can be followed by ultrasound of the thyroid gland where a steady shrinking of the thyroid gland occurs with or without the development of non-serum positive Hashimoto's thyroiditis (a seeming contradiction of terms) and a significant increase in thyroid malignancy. Serum positive changes occur only after years."

Source: A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome.

Dutch research found a subset of pwME have low T3.

TSH should be around 1 for optimal function according to a Norwegian study. You can have symptoms with TSH being in range. I had them, but wasn't treated until FT4 was out of range. Levothyroxine did not do much. I'm now trying Naturally Desiccated Thyroid hormone, already 1 symptom is subsiding and I'm not on optimal dose yet. Trying to get FT3 in upper quartile of range, but am going by symptoms. It's normal that TSH becomes slightly suppressed on NDT.

I definitely feel better on supplementation. For thyroid to function properly, B12 and iron also have to be optimal. I'm not there yet, but feel better on the combo.
 

pattismith

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a Nederland study found a Low T3 syndrome in a subset of ME patients.

https://forums.phoenixrising.me/thr...patients-with-cfs-a-case-control-study.58032/

I was in that subset, with a fT3 at the low limit, and TSH in the low normal range.

I tryed T3 during 9-10 months , but finally I was able to raise my normal production.

I took many supplements during these months before I was able to stop taking T3.

Among them, Selenium, Iodine, B6 may have been important to improve my thyroid balance, but I had to take Ambroxol and Inosine for the withdrawal.

Now my thyroid hormons are OK and stable, but I am still not cured. It looks like the hormonal unbalance is not only thyroid but also steroid hormons (estrogen, testosterone, cortisol).
 
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a Nederland study found a Low T3 syndrome in a subset of ME patients.

https://forums.phoenixrising.me/thr...patients-with-cfs-a-case-control-study.58032/

I was in that subset, with a fT3 at the low limit, and TSH in the low normal range.

I tryed T3 during 9-10 months , but finally I was able to raise my normal production.

I took many supplements during these months before I was able to stop taking T3.

Among them, Selenium, Iodine, B6 may have been important to improve my thyroid balance, but I had to take Ambroxol and Inosine for the withdrawal.

Now my thyroid hormons are OK and stable, but I am still not cured. It looks like the hormonal unbalance is not only thyroid but also steroid hormons (estrogen, testosterone, cortisol).
How interesting! I thought supplementation had to be for life. But that may be a difference between low T3 only and hypothyroidism, which I have. I take B complex, selenium, magnesium, and D as well. What improvements do you notice?

I thought pwME have low cortisol, was it measured during the study?
 

pattismith

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How interesting! I thought supplementation had to be for life. But that may be a difference between low T3 only and hypothyroidism, which I have. I take B complex, selenium, magnesium, and D as well. What improvements do you notice?

I thought pwME have low cortisol, was it measured during the study?
One improvement I noticed when i took T3 was relief of my Intracranial hypertension.

About the study, it was focused on Thyroid, they didn't include cortisol levels:

https://www.frontiersin.org/files/A...00097-HTML-r1/image_m/fendo-09-00097-t001.jpg
 
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Byron Hyde says thyroid issues occur often in pwME, but later in the disease.

"Endocrine Dysfunction: This feature is common and tends to be a late appearance and is most obvious in the: a. Pituitary-thyroid axis: This is common. Changes in serum TSH, FTI, FT4, Microsomal Ab., PTH, Calcium and phosphorus rarely occur until one or more years after illness onset and usually only after several years. This can be followed by ultrasound of the thyroid gland where a steady shrinking of the thyroid gland occurs with or without the development of non-serum positive Hashimoto's thyroiditis (a seeming contradiction of terms) and a significant increase in thyroid malignancy. Serum positive changes occur only after years."

Source: A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome.

Dutch research found a subset of pwME have low T3.

TSH should be around 1 for optimal function according to a Norwegian study. You can have symptoms with TSH being in range. I had them, but wasn't treated until FT4 was out of range. Levothyroxine did not do much. I'm now trying Naturally Desiccated Thyroid hormone, already 1 symptom is subsiding and I'm not on optimal dose yet. Trying to get FT3 in upper quartile of range, but am going by symptoms. It's normal that TSH becomes slightly suppressed on NDT.

I definitely feel better on supplementation. For thyroid to function properly, B12 and iron also have to be optimal. I'm not there yet, but feel better on the combo.
Yeah, luckily my TSH is still in range but by T3 just dropped below and I am worried that if I do not supplement that it will continue to drop. I already feel like I am experiencing many hypothyroid like symptoms and really do not want it to continue to worsen. Obviously I would love to not have to be on any hormone medication, but if it is going to support and help my body during this time I would be open to it.
 
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a Nederland study found a Low T3 syndrome in a subset of ME patients.

https://forums.phoenixrising.me/thr...patients-with-cfs-a-case-control-study.58032/

I was in that subset, with a fT3 at the low limit, and TSH in the low normal range.

I tryed T3 during 9-10 months , but finally I was able to raise my normal production.

I took many supplements during these months before I was able to stop taking T3.

Among them, Selenium, Iodine, B6 may have been important to improve my thyroid balance, but I had to take Ambroxol and Inosine for the withdrawal.

Now my thyroid hormons are OK and stable, but I am still not cured. It looks like the hormonal unbalance is not only thyroid but also steroid hormons (estrogen, testosterone, cortisol).
Yes my TSH is is normal range but T3 low as well. I would love to not have to take t3 but rather naturally get my value back via other supplements as you did. I can definitely feel some of the symptoms of hypo and would love to get those to go away.
 

BadBadBear

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I developed low T3 . TSH stayed normal. Was on T3 only. After a year and a half on Famvir, have eventually moved to T4 only and am in the process of very slowly decreasing it. My body has started converting T3 ok apparently. I hope I can eventually go off of thyroid meds as I don't have Hashimotos or other true thyroid problems.
 
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@BadBadBear did you have any symptoms of hypothyroidism? If so did you find that supplementation helped? I am in the exact same boat as you, not true thyroid problems like Hashimotos just love t3
 

BadBadBear

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Yes, my doctor prescribed T3 based on symptoms of hypothyroidism more than labs. T3 kept me alive and sane, probably saved my life. Eventually while on Famvir it just felt like T3 was too much and not helping, so I made a transition to Armour, then Armour plus T4. That also eventually felt like too much so then onto T4 only. Then slow decreases to test if my conversion was working. Now decreasing to see if I still need the exogenous hormone or not.

I am grateful to have had it when needed, and glad I can be off of it.
 

BeADocToGoTo1

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A few thoughts to throw in the mix.

Have you looked into any form of nutrient deficiencies or malabsorption issues, such as small intestinal bacterial overgrowth (SIBO), Candida yeast overgrowth, IBS, gluten sensitivity, Crohn's and the one particularly close to my experience, exocrine pancreatic insufficiency (EPI).

Magnesium, selenium, iodine and a few others are often deficient, and some thyroid issues can be due to or exacerbated by nutrient deficiencies.

Have you taken a close and honest look at your food and beverage intake? Water quality is also important, as chlorinated and fluoridated water also has a negative impact.

The best book I came across for the thyroid was The Paleo Thyroid Solution by Elle Russ who suffered through years of incompetent thyroid support from some of her doctors, but was able to turn her life around and details the steps she took.

Many doctors still just test TSH only, which clearly indicates they do not understand how the thyroid works. TSH is not a thyroid hormone and it will not tell you if your thyroid is functioning well.

Free T3, reverse T3, TPOAb, TgAb tests are often not done, even though they should be standard when checking the thyroid function. Have you had all of those tested?
 
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@BeADocToGoTo1 thanks for all the input. In terms of diet/lifestyle, I am doing everything in my power to support my body the best I can. So really good diet, mostly whole food plant based, non processed, no gluten or dairy, lots of color and variation with fruits and veggies, high quality protein sources, etc. LOTS of water, teas, occasionally coffee. So doing my best there. Could probably take a look at my water quality, have been thinking of investing in a berkley filter.

I have ruled out SIBO, candida, IBS, + Chrons. Do not really know anything about EPI. I do not think I have had my magnesium, selenium, or iodine checked. Although just starting magnesium supplementation and working on incorporating more sea vegetables into my diet.

Recently I have been having infrequent reactions to food, flushing (heat and redness) on face, chests, and joints of body that are not due to food sensitivities and are seemingly random ( I made another post about this). Currently still working on solving this issue with my doctor.

And I have only had TSH, Free t3/4, and tpo antibodies checked. And only t3 came out low.

I guess my concern is that my low t3 is just due to my body being tired and is an adaptation to the illness. And that no matter my lifesyle/diet that it will stay low, or get even lower unless I supplement with t3 (and curious if even that would work). I would prefer to not be on hormone supplementation.
 

pattismith

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Here my levels, so you can see where I was, and where I am now:


December 2017 (before starting T3)

TSH 0.97 µUI/ml (ref range 0.4-4)

fT3 :
1.9 pg/ml (ref.range 1.88-3.18)
2.92 pmol/L (ref range 2.88-4.88)

my dose of Liothyrronine was not high, only 6.1 µg once a day, then every other day.

Before I stopped it totally (you can see the TSH suppression was not strong):

TSH 0.87 µUI/ml (ref range 0.4-4)

fT3 :
1.75 pg/ml (ref.range 1.88-3.18)
2.69 pmol/L (ref range 2.88-4.88)

After I stopped my T3 intake,
my TSH made a jump to 1.88 then stabilized at 0.97
and my fT3 made a jump to 2.45, then stabilized at 2.4.

When your fT3 and your TSH are low (and your rT3 is high), you are likely to suffer from a deiodinase 1 deficiency.

As I have discovered here:

https://forums.phoenixrising.me/thr...rphism-and-low-t3-syndrome.58049/#post-962257

Deiodinase 1 is stimulated both by Selenium and T3

So I guessed that my Deiodinase 1 was bad (I have bad gene variants for that enzyme), and this is why I supplemented with selenium methionine and T3 (and B6 that is needed to use selenium from Se Met).


I added iodine, just in case.

And as you can see with my results, it worked! As soon as I stopped T3, my fT3 level rose, which means my T4 conversion improved.


Edit: I also stopped any flavonoid supplementation, because they inhibit Deiodinase 1 activity:

https://forums.phoenixrising.me/thr...rphism-and-low-t3-syndrome.58049/#post-963605
 
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starlily88

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As CFS'ers, are we more prone to lower thyroid levels, specifically t3 (and maybe t4), especially the longer we are ill? And if the CFS is the cause of the lower hormone levels, does supplementation do anything? I also read an article that people who have chronic illnesses often develop lower t3/t4 levels because the body is adapting to the illness and attempting to conserve energy. And that sometimes in this case, supplementation can be harmful. Any thoughts on this?

I am curious to know people who have tested low t3 (or t4) but normal TSH and supplemented hormones and what the outcome of supplementation has been for them?

I recently tested my thyroid for the second time since becoming ill about 14 months ago and my T3 low was but everything else in normal range. I first tested my thyroid 5 months after becoming ill and it was all in normal range, so it has dropped over the course of the illness.
Thanks for your posting. Last March 21, 2018 I got sick - told a virus attacked my thyroid.
I ran temps of 100- 101 every day/nite, could not swallow, had terrible pain throat, severe GERD.

Found out I had uncommon disease called "Painful Subacute Thyroiditis" which runs for at least 18 months. I Did the Antibody tests, TSH, Free T4, T3, Reverse T's, Sed rates.

I was so miserable - my TSH was so very high - over 9.2 (0.50 - 4.50).
My Free T3/Free T4 of course were below normal. I could not sleep, think, swallow, get rid of the fever,
sweating profusely, etc.

Eventually my body switched to a "Hypo" stage - then I was freezing, hair falling out, so exhausted, had no short term memory, skin so dry, scalp still hasn't stopped itching, etc.

I do take Zinc, selenium, magnesium, D3/calcium. Put on Levothyroxine 50 mcg.
Had to do Prednisone - to get thyroid pain/swelling down. Sed rate was highest I ever had.

After 13 months of misery - I feel "somewhat" better - but all of April/May noticed that my symptoms were
much worse - my TSH is OK (altho pretty low)
But my Free T3 and Free T4 dropped a lot in April -both at almost below normal.

I had to ask my Endo if I could change meds - to the pig thyroid gland dessicated one (Armour).

Thanks for informing me that we with ME/CFS will always have low Free T3/Free T4 - but right now my symptoms changed dramatically. I have been home since May 2nd - with sinus pain, no fever, horrible sore throat - which I realize now is actually thyroid pain.

The last 13 months have been the worst in my life - this is so much worse than my breast cancer, worse than my Interstitial cystitis, and worse than my worst days of ME/CFS.
Starlily88
 

pattismith

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@starlily88

you have a true thyroidal illness, which is different from @Maggi3 , but you surely have problems to calm down your thyroiditis, and to find the right dosage with your medications.
If both your fT4 and fT3 are low, it should be logically an indication to increase your thyroid medication, did you asked your endo about this issue?
 

starlily88

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@starlily88

you have a true thyroidal illness, which is different from @Maggi3 , but you surely have problems to calm down your thyroiditis, and to find the right dosage with your medications.
If both your fT4 and fT3 are low, it should be logically an indication to increase your thyroid medication, did you asked your endo about this issue?
I was so sick I had to cancel my ENDO appt May 2nd - so I could only "discuss" my lab changes thru a portal with my Dr. He truly does not respond with "answers" unless I am physically in front of him.

I took thyroid labs April 30th, and saw my Free T3/Free T4 were down to almost below normal.
I sent him the results - and I suggested perhaps a change in my meds - since my symptoms were awful.
I talked to a Costco Pharmacist in Seattle Washington about my results - I got more information from her than in the whole year with my ENDO.
She told me that I would feel a lot better if I could increase my thyroid hormones to "upper level" of normal.
She thought changing to Armour was my last chance to see if I can get them up, so I asked my ENDO if I could get script for Armour. It is so puzzling to me how there is no set "MO" when dealing with my disease.

Starlily88
 
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Starlily, only 50 mcg Levo sounds like so little for your levels. I was on 1.25 mg with TSH of 6 before tx. Now on 2.5 grain NDT still v symptomatic. I hope you will get Armour and if not, that you can source it yourself. Or different Endo?
 

starlily88

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Starlily, only 50 mcg Levo sounds like so little for your levels. I was on 1.25 mg with TSH of 6 before tx. Now on 2.5 grain NDT still v symptomatic. I hope you will get Armour and if not, that you can source it yourself. Or different Endo?
Tweety - you were on 1.25mg of Levo? So how much more is that compared to 50 mcg Levo?
Did the 1.25 mg of Levo help a lot?

2.5 grains of NDT - what is NDT? Is this dessicated natural thyroid like Armour?
How many milligrams is 2.5 grains mean?
Waiting for script in mail for Armour Thyroid.
It seems like Endos have no set way to treat this disease, and did see another ENDO at Hopkins.
He added Liothyronine to lessen my symptoms - I could only do one tab - it made me speed, heart raced too much - so I stopped after one tab.

Wrote Hopkins Endo with my new levels - he wrote me that he does not think this has anything to do with my thyroid - don't know if he means pituitary or hypothalamus gland.
I find Endos don't seem to know much about thyroid disease, or just don't like to tell me any information so I am so lost how to get better. Starlily88