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

BadBadBear

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Sure, keep in touch!

One of my earlier 'doctors' had been 'educated' by Mayo clinic and had been recently to their thyroid symposium, and she lectured me definitively that no one needs T3 and that any other test beyond TSH is useless. She also gave me a handout on gratitude and thought that might help me. I still want to roll on the floor laughing about that. It was ridiculous. I hope Hopkins doctors are getting better info than Mayo is handing out.

Our disease is sooo poorly understood and we suffer for it.

Hope you can find some answers, or have some new ideas about which direction to go.

:hug:
 

starlily88

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Sure, keep in touch!

One of my earlier 'doctors' had been 'educated' by Mayo clinic and had been recently to their thyroid symposium, and she lectured me definitively that no one needs T3 and that any other test beyond TSH is useless. She also gave me a handout on gratitude and thought that might help me. I still want to roll on the floor laughing about that. It was ridiculous. I hope Hopkins doctors are getting better info than Mayo is handing out.

Our disease is sooo poorly understood and we suffer for it.

Hope you can find some answers, or have some new ideas about which direction to go.

:hug:
Thanks Bad Bear. I was laughing at your early Dr:_ Yes my Hopkins Dr, who I have only been to one time, going back to him few weeks - he actually calls me on phone - many times, to check up on me.
He answers me same day on Hopkins Portal.
Nixed increasing Levothyroxine. Holding off on doing Armour. See if Hopkins Doc will do Reverse T3, best clue so far - to determine If I am converting T4 to T3..........................Starlily
 

BadBadBear

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@starlily88

Stellar that your Hopkins doc is a good one! Yay!

Yes, if they will test your RT3 then it will make the next step decisive as to whether adding additional T4 is worth trying or only causing more problems. And its wonderful that you have a baseline previous measurement to compare against!

Let us know how it goes, please!

My doctor that gave me the gratitude handout later developed Fibromyalgia and is now having tons of fatigue and pain herself. I am very sad for her about this, though through it she has developed a much more compassionate nature about CFS and alternative treatments. I still see her for certain things, and I have told her that T3 treatment probably saved my life. Hopefully through her experience she's becoming an ally for the next person that walks in seeking her help.
 
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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
Wait, @pattismith, are you saying that stopping taking t3 actually helped you improve? So it did not benefit you? But rather taking things like selenium and iodine did?

I am also curious if you know much about the different types of thyroid hormones. You said you were taking Liothyrronine, correct.It seems the that the hormone levothyroxine is typically prescribed to people with low TSH but it many cases it does not help those of us with just low t3, so they are then prescribed synthetic t3 (i.e. liothyrronine and is it called anything else???). There seems to be so much confusing info out there on this stuff. I am also worried that if I begin taking t3 that my body will then become dependent on it. You said you were able to ween off of yours but sounds like it took a lot of work. I am afraid my doctor is not going to take the time to make sure everything is "right" for me (i.e. the right hormone, or be able to help me ween off it once my levels are evened out). I do not want to further screw things up. I also do not expect you to have all the answers here, but if you can shed any more insight on this it would be greatly appreciated.
 

pattismith

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Wait, @pattismith, are you saying that stopping taking t3 actually helped you improve? So it did not benefit you? But rather taking things like selenium and iodine did?

I am also curious if you know much about the different types of thyroid hormones. You said you were taking Liothyrronine, correct.It seems the that the hormone levothyroxine is typically prescribed to people with low TSH but it many cases it does not help those of us with just low t3, so they are then prescribed synthetic t3 (i.e. liothyrronine and is it called anything else???). There seems to be so much confusing info out there on this stuff. I am also worried that if I begin taking t3 that my body will then become dependent on it. You said you were able to ween off of yours but sounds like it took a lot of work. I am afraid my doctor is not going to take the time to make sure everything is "right" for me (i.e. the right hormone, or be able to help me ween off it once my levels are evened out). I do not want to further screw things up. I also do not expect you to have all the answers here, but if you can shed any more insight on this it would be greatly appreciated.
Dear Maggie, I am not a doctor and can only speak about my own experiments. What kind of thyroid problem do you suffer from?
 
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How much are your fT3 and your TSH, do you know your rT3?
free t3 - 2.3, so just below normal
free t4 - 1.3
TSH - 1.4

I do not know rt3. Although these results were done using an at home kit, my PCP wants to run a full thyroid panel at the local hospital to confirm, which I will do tomorrow.

And I just have a lot of symptoms that seem to correlate with underactive thyroid and that are not typically associated with me/cfs - like really dry skin and hair, loss of menstrual cycle, low metabolism, and water retention.
 

starlily88

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Let us know how it goes, please!

My doctor that gave me the gratitude handout later developed Fibromyalgia and is now having tons of fatigue and pain herself. I am very sad for her about this, though through it she has developed a much more compassionate nature about CFS and alternative treatments. I still see her for certain things, and I have told her that T3 treatm
BadBear - I am so very bad - I laughed out loud that that dr/gratitude handout got Fibro, which I know is not nice, but it's sort of like payback.
I showed all my labs to my Neurologist today - she is so very supportive of me, writes me any scripts that will help with my digestion, sleep. She was one who diagnosed me with PTSD. I would be lost without her. I gave her a big hug today, and thanked her for always having my back. Starlily
 

pattismith

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free t3 - 2.3, so just below normal
free t4 - 1.3
TSH - 1.4

I do not know rt3. Although these results were done using an at home kit, my PCP wants to run a full thyroid panel at the local hospital to confirm, which I will do tomorrow.

And I just have a lot of symptoms that seem to correlate with underactive thyroid and that are not typically associated with me/cfs - like really dry skin and hair, loss of menstrual cycle, low metabolism, and water retention.
your datas mean nothing if you don't put the normal ranges of your laboratory. :)
 
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@maggie3

Just wanted to add, that starting Liothyronine gave me in fact two benefits:

-relief from cranial pressure
-relief from recurrent cold sore

Now that my natural T3 conversion has improved and that I don't need Liothyronine any longer, I don't have any cold sore relapse.

PS: so if you have (like me) symptoms that could be related to lack of thyroid hormones (in my case immune deficiency and head pressure), you are likely benefit from Liothyronine.
 
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Float

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@maggie3 "I guess my concern is that my low t3 is just due to my body being tired and is an adaptation to the illness. "

I havent read all the responses so excuse any repetition.

Do you know about reverseT3? It is produced under stress, steals the building block of T3 (uses up T4), and blocks T3 receptors.

80% of what the thyroid produces is T4 (im geenralising, im sure youll do your own fact checking). You could say T4 is a transporter molecule. It has 4 molecules of Iodine, hence the 4.

At the cells, T4 is converted into T3 for cellular metabolism.

T4 can also be converted into reverseT3.
If you are producing reverseT3, initially there may be enough T4 to make both T3 and reverseT3. However, reverseT3 will block receptor sites for T3, thats why its called an inactive thyroid hormone - it doesnt switch the cellular metabolism on.

At some point, the T4 may may be converted to revT3 at the detriment of T3levels. Now you have low T3 and blocked t3 sites .

Next, in theory, if your body wants to make heaps of revT3, it will churn through all the T4.

This is just a guideline and not meant to be 100% accurate.

The reason for low t3 could be different for people. Certainly the stress of living with a chronic illness is enought to produce reverseT3. And certainly hypothyroid could be mistaken for ME.

My educated guess, is that if you have ME, thaking thyorid hormone will not address the fatigue or orthostatic hypotension , two of the most common symptoms - unless your ME is caused by low thyroid hormones. It may certainly help intially and feel like a real boon, but only time will tell.

If someone did have high reverse T3, then they may be able to flush it out using synthetic T3 liothyronine/cytomel etc. Its notoriously hard to get prescribed so youd really need an open minded/easy going/suggestible doc or a heap of science!

Whether a nutritional supplement will help 100% depends on whether you have a deficit of the nutrients you decide to take, and then whether they are ina bioavailable form / the body is able to tranform them into a form that can be utilised. Obviously iodine is essential! Iodine is in fortified bread, but apparently US started fortified with bromide instead?? And if you are gluten free, is that bread fortified with iodine? A lot of people use himlayan salt, but does it contain adequant iodine, or is it best to use sea salt or plain old fortified table salt, depite its canti caking agents! Its easy to google iodine sources and check we are eating those foods.

Any multivit or thyroid nutitrient supplement for 2 month initial trial is a good start if you are curious.

Low thyroid hormone can have affects on nutrient absorption as it adjusts everything from the amount of stomoach acid produced, to gut motility (and more thnings I dont know well enough to name!).

I hope you find your answers :)
 
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Float

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free t3 - 2.3, so just below normal
And I just have a lot of symptoms that seem to correlate with underactive thyroid and that are not typically associated with me/cfs - like really dry skin and hair, loss of menstrual cycle, low metabolism, and water retention.
That certainly does ring a bell for thyroid, and also low esttrogen, or perimenopause, or hypocaloric diets, or overtraining (ha but as an ME pt im pretty sure youre not overtrainig!).
 
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your datas mean nothing if you don't put the normal ranges of your laboratory.




@maggie3





Any multivit or thyroid nutitrient supplement for 2 month initial trial is a good start if you are curious.







I am just waiting to get my second set of thyroid test results back from my pcp, the more accurate ones. Although she seems to have the results but has just not posted them for me to have access to yet as she messaged me saying t3 is low (as I knew) and t4 is borderline low.





At first she wanted me to start on 25 mcg daily of levothyroxine, but from all the research that I have done it did not sound to me like that was going to benefit me. I asked about just taking liothyronine but instead she told me to try 15 mg of Armour Thyroid, so desiccated thryroid hormone, which I think has a 4:1 ration of t4:t3 for 6 weeks and then re-test. It does seem like she was not willing to prescribe liothyronine, or maybe just does not know that much about it? Who knows. I guess I am just going to have to experiment and see what works.





@maggie3





80% of what the thyroid produces is T4 (im geenralising, im sure youll do your own fact checking).

Yeah I have been trying to do a lot of my own research on the thyroid and am really starting to understand how complicated the issue is, and how there are even a lot of discrepancies between leading endocrinologists (like all the rest of medicine too, ha).





@maggie3





Whether a nutritional supplement will help 100% depends on whether you have a deficit of the nutrients you decide to take, and then whether they are ina bioavailable form / the body is able to tranform them into a form that can be utilised. Obviously iodine is essential! Iodine is in fortified bread, but apparently US started fortified with bromide instead?? And if you are gluten free, is that bread fortified with iodine? A lot of people use himlayan salt, but does it contain adequant iodine, or is it best to use sea salt or plain old fortified table salt, depite its canti caking agents! Its easy to google iodine sources and check we are eating those foods.




I don't really eat bread but I have been trying to incorporate more selenium and iodine into my diet (through sea salt, kelp granules, and seaweed dishes- actually really enjoy seaweed when its prepared well) and altering my supplement program a bit.





Thanks for continuing to support my growing knowledge and understand of the complexities of the thyroid!