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

Remi

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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?

50 mcg is half a mg, so 1.25 mg is 2.5 times as much. The Levo did not do much.

2.5 grains of NDT - what is NDT? Is this dessicated natural thyroid like Armour? Yes.
How many milligrams is 2.5 grains mean? 1 grain is similar to 1 mg Levo.
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
Agree, in the Netherlands they don't know much either. But if any endo can rx Armour, I'd go for it.
 

Helen

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@starlily88 , I´m really sorry to hear about your struggles with your thyroid and the endos you met.

I´d highly recommend reading Dr. Jeffry Dach´s articles about Hashimoto´s and also the thyroid ( as well as the ones about LDN).
https://jeffreydachmd.com/

Did they test if you have thyroid antibodies? If not, I think they should, as that should reflect if there is an ongoing autoimmune attack, or not.
I know women who had no longer thyroid antibodies after they stopped eating gluten. Well worth a try.
I think you´ll learn what you´ll need from Dr. Dach. He is brilliant.
The homepage www. stopthethyroidmadness.com is also good. A female doctor with hypothyroidism recommended it to me ...

ME patients are cleary prone to having hypothyroidism, but we don´t know why yet, though if not treated our immune systeme and lots of other bodily functions will not work as well as possible. // Best wishes!!
 

starlily88

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Agree, in the Netherlands they don't know much either. But if any endo can rx Armour, I'd go for it.
I wonder why noone increased my dose of Levo, Levo did nothing for me either.
I had to ask him if I could try Armour.
His office snail mailed me Script for Armour - hope I get it this week:)
So you will be taking 2 times more Armour thyroid than Levo, interesting.
 

starlily88

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@starlily88 , I´m really sorry to hear about your struggles with your thyroid and the endos you met.

I´d highly recommend reading Dr. Jeffry Dach´s articles about Hashimoto´s and also the thyroid ( as well as the ones about LDN).
https://jeffreydachmd.com/

Did they test if you have thyroid antibodies? If not, I think they should, as that should reflect if there is an ongoing autoimmune attack, or not.
I know women who had no longer thyroid antibodies after they stopped eating gluten. Well worth a try.
I think you´ll learn what you´ll need from Dr. Dach. He is brilliant.
The homepage www. stopthethyroidmadness.com is also good. A female doctor with hypothyroidism recommended it to me ...

ME patients are cleary prone to having hypothyroidism, but we don´t know why yet, though if not treated our immune systeme and lots of other bodily functions will not work as well as possible. // Best wishes!!
Thanks. I don't have Graves or Hashimoto's. Did test for thyroid antibodies, had massive amount of testing.
My thyroid disease is so uncommon only 1 out of 400,000 people ever get it, so no drs know about it, since there is no medical studies on it. Thanks a lot.
 

Remi

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I wonder why noone increased my dose of Levo, Levo did nothing for me either.
I had to ask him if I could try Armour.
His office snail mailed me Script for Armour - hope I get it this week:)
So you will be taking 2 times more Armour thyroid than Levo, interesting.
I'm not even on optimal dose... I wonder what that dose is.
 

BeADocToGoTo1

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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.
Hi maggie3,

Lots of great actions you have taken. The Berkey filter is a no brainer, but make sure to get the one with fluoride add-on. In most of the US, tap water is shockingly bad. Fluoride, ammonia and chlorine toxins are added to the already poorly treated water supply. Things like PFCs (PFOA, PFOS) are even unregulated. Fluoride especially is bad for the thyroid. Any water from plastic bottles is also to be avoided due to leached chemicals, plastic particles, etc.

Low T3 (the single most important thyroid hormone) is an important symptom, and not one to ignore, nor just accept as part of ME/CFS. There are many with ME/CFS with a perfectly functioning thyroid. But, you can suffer from many ME/CFS symptoms due to a poorely functioning thyroid.

It will likely be far more preferable to have thyroid medication than living with the life quality destroying symptoms if your thyroid is not producing or converting enough T3. My wife was not able to use Synthroid, but functions very well on Armour (natural desiccated thyroid). For some reason (money) Synthroid gets pushed by endos and nasty rumours are sometimes spread about the quality of Armour. Others function really well on Synthroid. Every person can have different levels at which they are comfortable. Remember that the range from blood tests are averages from a large swath of the population. Please find an experienced endo as soon as possible. Someone who is comfortable with Armour (if not....run), or even even better one who has thyroid issues him/herself.

I mentioned EPI (exocrine pancreatic insufficiency) only as a possible cause of nutrient deficiencies to rule out. EPI can indirectly affect the thryoid amongst many other things, but is rarely checked or understood well. You can check the link in my signature for more details.

Please check out Elle Russ' book as it is an easy read written by someone who suffered through thyroid issues and horrible endos, but wrote it to help anyone with thyroid issues.
 
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Hi maggie3,

Lots of great actions you have taken. The Berkey filter is a no brainer, but make sure to get the one with fluoride add-on. In most of the US, tap water is shockingly bad. Fluoride, ammonia and chlorine toxins are added to the already poorely treated water supply. Things like PFCs (PFOA, PFOS) are even unregulated. Fluoride especially is bad for the thyroid. Any water from plastic bottles is also to be avoided due to leached chemicals, plastic particles, etc.

Low T3 (the single most important thyroid hormone) is an important symptom, and not one to ignore, nor just accept as part of ME/CFS. There are many with ME/CFS with a perfectly functioning thyroid. But, you can suffer from many ME/CFS symptoms due to a poorely functioning thyroid.

It will likely be far more preferable to have thyroid medication than living with the life quality destroying symptoms if your thyroid is not producing or converting enough T3. My wife was not able to use Synthroid, but functions very well on Armour (natural desiccated thyroid). For some reason (money) Synthroid gets pushed by endos and nasty rumours are sometimes spread about the quality of Armour. Others function really well on Synthroid. Every person can have different levels at which they are comfortable. Remember that the range from blood tests are averages from a large swath of the population. Please find an experienced endo as soon as possible. Someone who is comfortable with Armour (if not....run), or even even better one who has thyroid issues him/herself.

I mentioned EPI (exocrine pancreatic insufficiency) only as a possible cause of nutrient deficiencies to rule out. EPI can indirectly affect the thryoid amongst many other things, but is rarely checked or understood well. You can check the link in my signature for more details.

Please check out Elle Russ' book as it is an easy read written by someone who suffered through thyroid issues and horrible endos, but wrote it to help anyone with thyroid issues.
Thanks so much for the wonderful responses. This did inspire me to really pursue this and advocate for myself, even though my t3 is only slightly low, I am experiencing a lot of the symptoms associated with hypo so if medication can help I am all for it. Going to keep pushing my PCP to help or get me in with an endo that knows there stuff.
 

starlily88

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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.
Bear - When you say "was on T3 only" - were you only on "Liothyronine"? It is also called Cytomel, and is Synthetic T3. No Endo would let me take this without taking Levothyroxine with it.

Also - what is "Famvir"?
"on T4 Only" - so you are only on Levothyroxine now?

I am on Levo which is synthetic T4. Hopkins Dr. put me on Liothyronine as a supplement to Levo..

With my rare/uncommon thyroid disease - I was told it was self-limiting, and would last 18 months only.
Now on 13 months - not getting any better, but worse. Thanks Starlily88
 

starlily88

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It will likely be far more preferable to have thyroid medication than living with the life quality destroying symptoms if your thyroid is not producing or converting enough T3. My wife was not able to use Synthroid, but functions very well on Armour (natural desiccated thyroid). For some reason (money) Synthroid gets pushed by endos and nasty rumours are sometimes spread about the quality of Armour. Others function really well on Synthroid. Every person can have different levels at which they are comfortable. Remember that the range from blood tests are averages from a large swath of the population. Please find an experienced endo as soon as possible. Someone who is comfortable with Armour (if not....run), or even even better one who has thyroid issues him/herself.
Thanks for great post. I got much information from a Costco Pharmacist other day - told me the importance of getting FreeT3 up to "upper normal limit" for feeling best.
She told me that patient can have low Free T4/Free T3 that show your thyroid gland is in Self destruct mode, but it one's TSH is "normal" many Endocrinologists say "you are fine" - which is NOT true.

She also told me that many patients do quite well on Armour thyroid (which is much more expensive for me to buy than Levothyroxine).
She told me that once you take Armour Thyroid - if it works well - make sure that the Pharmacy gives you the Exact same manufacturer each/every time - do NOT let them switch to a new one.

All Endos automatically order Levothyroxine. I have suffered greatly these last 13 months - on such a tiny amount of Levo - my ENDO never increased my dose, and Never suggested trying Armour.
I had to tell him in an email - to please send me script for Armour ASAP as my T3/T4 dropped precipitously in last 60 days.

Reading all these posts - is so disheartening.
Nowhere do I see one ENDO testing our Pituitary glands, Hypothalamus gland, ACTH, Cortisol - which can be the reason hormones have dropped. I have Gastroparesis/Colonic inertia/malabsorption - so never get proper nutrition.
 

starlily88

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I'm not even on optimal dose... I wonder what that dose is.
Tweety one thing I have observed - not one ENDO I know - has a clue what is optimal dose.
Nor do they remotely point to our pituitary/hypothalamus, ACTH, Cortiso - as source of problem.
I have seen patients that have had thyroid problems for 25 -35 years - with Endos that don't change doses, don't change thyroid meds, don't test for Thyroid antibodies, don't test for Iron deficiency.
I had to get emergency Iron Infusion - and have a full time Hematologist now.
Iron, Magnesium, Selenium all help the thyroid - this is not the solution but it does help a bit.
Starlily88
 

Helen

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Helen - thanks so much for the article by Dr. Dach. It did help me a lot, much appreciation to you, thanks Starlily
I´m glad you liked the article. I thought you would, as I´ve been through all stages of treatments for my hypothyroidism. I also tried all kind of combinations of Levothyroxine, Liothyronine and Nature Throid. I´ve also been on T3-only, meaning that you only take T3.

I think you are quite right about the endos. The problem is that they don´t recognize symptoms from low thyroid output. If they did, they should be able themselves to evaluate if the dose was enough, or even too high. I was fortunate to once meet Dr. Mark Starr, who also has hypothyroidism and he wrote a very good book "Hypothyroidism type 2" ( which is about when you have a conversion or a receptor problem, still you need a correct dosing of thyroid hormones).

Starr describes all the symptoms that can be seen, or measured, in hypothyroidism. He teaches his thyroid patients to take their pulse to make sure that they can control by themselves if the dose he puts them on is too high. If so, they are asked to stop and contact him. Other doctors are often too scary to reach the optimal dose, so they´d rather leave their patients with a too low dose.

Checking your morning body temperature before getting out of bed usually also reflect if you have enough of thyroid hormones ( should be 36.8 - 37 C to make enzyme processes a.o. work properly).

Claiming that you still have symptoms from lack of thyroid hormones, describing them in detail, might be of help. It clearly was for me when I finally realized where the problem is and started to argue about my condition related to dosing. The site Stopthethyroidmadness used to have good lists of possible symptom sas well.

Was your B12 level checked after the iron deficiency? Maybe you already told us. It´s well known among good doctors that lack of iron can cause a B12 deficiency. Sadly there is no 100 % valid test, except for measuring in spinal fluid. Though, if you aren´t on B12 a serum cobalamin test use to show a deficiency.

Hope this could help, although in bad English and a bit unorganized. I always get engaged when people, mostly women, aren´t properly treated for their hypothyroidism.
 
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starlily88

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I´m glad you liked the article. I thought you would, as I´ve been through all stages of treatments for my hypothyroidism. I also tried all kind of combinations of Levothyroxine, Liothyronine and Nature Throid. I´ve also been on T3-only, meaning that you only take T3.

I think you are quite right about the endos. The problem is that they don´t recognize symptoms from low thyroid output. If they did, they should be able themselves to evaluate if the dose was enough, or even too high. I was fortunate to once meet Dr. Mark Starr, who also has hypothyroidism and he wrote a very good book "Hypothyroidism type 2" ( which is about when you have a conversion or a receptor problem, still you need a correct dosing of thyroid hormones).

Starr describes all the symptoms that can be seen, or measured, in hypothyroidism. He teaches his thyroid patients to take their pulse to make sure that they can control by themselves if the dose he puts them on is too high. If so, they are asked to stop and contact him. Other doctors are often too scary to reach the optimal dose, so they´d rather leave their patients with a too low dose.

Checking your morning body temperature before getting out of bed usually also reflect if you have enough of thyroid hormones ( should be 36.8 - 37 C to make enzyme processes a.o. work properly).

Claiming that you still have symptoms from lack of thyroid hormones, describing them in detail, might be of help. It clearly was for me when I finally realized where the problem is and started to argue about my condition related to dosing. The site Stopthethyroidmadness used to have good lists of possible symptom sas well.

Was your B12 level checked after the iron deficiency? Maybe you already told us. It´s well known among good doctors that lack of iron can cause a B12 deficiency. Sadly there is no 100 % valid test, except for measuring in spinal fluid. Though, if you aren´t on B12 a serum cobalamin test use to show a deficiency.

Hope this could help, although in bad English and a bit unorganized. I always get engaged when people, mostly women, aren´t properly treated for their hypothyroidism.
Helen thanks so much for this great insight and information.
My ENDO constantly told me my symptoms were due to my ME/CFS - but of course they were all new symptoms I never had in my life so far, yet he stuck to this story.
I got so upset that he could not get that my life had come to a screeching stop.
I was totally home bound, not eating due to GERD - oh that one I only found out because my neighbor is a visiting Hopkins dr - and I called him after the 8th nite of what felt like a heart attack.

Because of him - he made me eat yogurt right away - and miracle! The pain went away. He told me that thyroid problems often cause severe GERD.
He also found me on the sidewalk a month before - just laying there - because I could not open the door to my
flat, nor could I climb any stairs, I had such weakness, and trouble walking and breathing.

He took me up to my flat, looked at my "thyroid numbers" from the lab - and told me how very sick I was.
This was the validation my ENDO of over 25 years refused to give me.

My B12 was checked - and it is fine. My ferritin and iron is good now, and I go back for labs soon.

The Person from Netherlands said she was on 1.25 mg LEVO before - that my 50 mcg Levo was so low.
I just called my pharmacist - she said "well 98% of ENDOs order LEVO not Armour" and said my Endo was the best of all of them.

She asked me "Why doesn't he up your dose?" She said 50mcg is normal dose.
She said I could up my dose to 75 mcg - see what happens after 30 days on labs.
I think I am going to try that. I feel like I am treating myself, so "stopthethyroidmadness.com" is exactly how I feel right now - this is pure nonsense.

Thanks Starlily88
 

BadBadBear

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Bear - When you say "was on T3 only" - were you only on "Liothyronine"? It is also called Cytomel, and is Synthetic T3. No Endo would let me take this without taking Levothyroxine with it.

Also - what is "Famvir"?
"on T4 Only" - so you are only on Levothyroxine now?

I am on Levo which is synthetic T4. Hopkins Dr. put me on Liothyronine as a supplement to Levo..

With my rare/uncommon thyroid disease - I was told it was self-limiting, and would last 18 months only.
Now on 13 months - not getting any better, but worse. Thanks Starlily88
hi @starlily88 ,

Yes, I was on Cytomel or generic T3 aka liothyronine for about 3 years. I have eventually been able to transition over to levo. But for those first three years, I could not convert T4 into T3. All T4 did was raise my reverse T3 levels and make me more tired.

Are they tracking your RT3 levels?

When you tried T3 did you split the dose? I had to split mine into 5x doses as I needed small doses frequently. I could not tolerate higher doses less often. Also I took almost a year to get onto my full dose. My adrenals were fried, and T3 places a demand on them.

Paul Robinson's Circadian T3 dosing protocol really helped my adrenals. If you have not looked into it, I would recommend it.

Famvir is my antiviral for EBV. Once my EBV improved, my body started being able to convert T4 into T3.

It has been a very lengthy process but my thyroid function has improved significantly in the course of my illness and recovery.
 

starlily88

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Are they tracking your RT3 levels?

When you tried T3 did you split the dose? I had to split mine into 5x doses as I needed small doses frequently. I could not tolerate higher doses less often. Also I took almost a year to get onto my full dose. My adrenals were fried, and T3 places a demand on them.

Paul Robinson's Circadian T3 dosing protocol really helped my adrenals. If you have not looked into it, I would recommend it.
Thanks for reply BadBear- Only time my Endo did my T3 Reverse was on 05/15/2018 - 1st day I started my thyroid testing. It was 16 ng/dl. Standard range at Hopkins was 8 - 25 ng/dl.
He never repeated this test again - altho he did 3 months of thyroid hormone testing - these were all fine.

My Hopkins Endo gave me Liothyronine T3 5mcg tabs on December 7, 2018.
I was so freezing all the time, hair falling out, scalp itching profusely, skin so dry, eyes so dry - basically I could not stand it anymore.
I only did ONE tab of the T3 - it made my heart race so fast on only 5 mcg.
He had added this as a supplement to my Levothyroxine 50 mcg - so I had combo of T3 and T4 one day only.

I think all of our adrenals are fried with ME/CFS - at least a third ENDO told me that.

I have an anti-viral just like you do - and I used it for last couple months for EBV - used Acyclovir.
But I am worse than ever - I think it is due to high amount of stress also - since March 13, 2019 to April 15 2019 - I lost all the GAS to my place.

I had no HOT water, no HEAT at all, no GAS to do range cooking (hard boiled eggs, etc), could not use oven, or dishwasher, or washer to wash my clothes.

It was 20 degrees colder than normal all of March 2019 -- so at nite it was 47 -50 degrees Farenheit in my place.
I am freezing right now - and it is 69 degrees in here, and put heat on a bit.
Being not able to feed myself, not bathe, not wash hands except in frigid water, and to live for almost one month in terrible awful cold - I only had tiny space heater - I think this is why my T3/T4 dropped so
much on April 30 2019.

We had to be on phone with the State attorney office, lawyers, news people - some of us tried to sleep in our cars - all the GAS pipes had to be replaced.

Just sold my Mom's home so had no place to go to.
For the last 15 days - my throat is so sore and swollen - nothing I do makes it better. My sinuses hurt but I think colds/allergies are around - but my thyroid numbers dropping so much - has made me have chills, hands/feet are freezing even when it got to be almost 78 degrees inside here.

What is Paul Robinson's T3 dosing protocol? Is it on our site?
I know I can't go thru 3 years of this - I am either going to start Armour thyroid or up my Levothyroxine dose
to 75 mcg today - to see if upping my dose a bit will help me.
Thanks a lot Starlily
 

BadBadBear

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@starlily88 -

So if I was you, I'd either ask my endo for labs or order them yourself if you live where you can, and see what your RT3 is doing before you add any other meds. If RT3 is going up on T4 meds, then T4 meds will just not help you. If your RT3 is same or going down, then T4 meds might be worth staying on, but at a higher dose (then you'd need to recheck everything in 6 weeks or so).

Honestly, I'd check that before I did anything else, if you have been on a stable T4 dose so you are not changing things without knowing fully where you are now.

That said, when I started T3, I was splitting a 5 mcg tab into quarters, and taking a quarter tab once a day to start! Its a tiny dose, but T3 can cause the T4 in your body to start converting better/faster. Even in that tiny of a dose.

I also did the same with Armour while I was on it (plus T4). I split a 1/4 grain of Armour in two, which is really hard because they are tiny, and took that with some T4 to aid conversion.

Once you start using T3 the difficulty is that your labs may look really weird/bad because your TSH and T4 levels may essentially go to zero. Some docs freak out about it, so hopefully your endo would be OK with it. But T3 only treatment does make it almost impossible to use labs to gauge how well your meds are working. I tracked vitals the whole time I was on it to know where I was, and watched my FT3 level.

Paul Robinson's stuff is on the net, you can find a good write up of it on STTM:
CT3M at STTM

Last because I don't want to overwhelm you with stuff, when I started Famvir, it took a good 6 months before I finally was feeling as well as I did when I started it. It really drug me down at first. Stress absolutely doesn't help, but the antivirals can take a very long time even to get back to baseline.

Don't get discouraged, hang in there.
 

starlily88

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That said, when I started T3, I was splitting a 5 mcg tab into quarters, and taking a quarter tab once a day to start! Its a tiny dose, but T3 can cause the T4 in your body to start converting better/faster. Even in that tiny of a dose.

I also did the same with Armour while I was on it (plus T4). I split a 1/4 grain of Armour in two, which is really hard because they are tiny, and took that with some T4 to aid conversion.
BadBear - OK, have to admit, this is a lot for me to understand - because I can't concentrate, my sed rate is quite high, and my throat/thyroid is so painful for over 2 weeks.

Splitting the 5 mcg T3 is genius!! Thanks - I would not get the heart racing!
But you said it took 3 years, I thought - did you do this for 3 years?

For how long did you split 1/4 grain of Armour in 2?
Again, forgot what a "grain" means compared to MG??
He ordered 30 mg Armour tabs.

My Endo did not tell me to take Armour with my Levo T4 - I talked to him about how much trouble I would have converting T4 to T3 - both he & Hopkins Thyroid dr looked at me like I had 2 heads:bang-head:

With ME/CF most of us have terrible reactions often paradoxical to most all meds.
You must have an incredible Endo - but I assume you did this on your own/
No ENDO I know has this much imagination to make conversion possible, and have the least side effects.

I understand the importance of finding out my Reverse T3 - thanks for telling me this.

Remember - I don't know what thyroid disease you have - but mine is rare, uncommon, he has seen 40 cases in his lifetime. But telling me it will be over in 18 months - and it is now 14 months, and I feel horrible, I don't believe him, and no medical studies done on it.

read the URL article - I cannot do that right now - I have Impaired Glucose Tolerance - which means like a
Pre diabetes 2 - I do A1C tests every 3 months - till he moved to another state.
I was doing great - normal - then it went up, but still OK.

Once I got this disease - it went up to 5.6% - at 5.7% I am entering big trouble. It measures my glucose
average over a 3 month period (I used to have to use stick every day before this great invention).

I have not taken this test since Sept 2018 -but have script to take it now.

How did you figure all this out? You are most generous to share all of this with me, I truly appreciate your help in this - this is exactly what I have been begging my Endo to tell me, yet he stays silent:nerd:
To be continued Starlily
 

BadBadBear

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@starlily88

Ok, so... I have an Integrative MD I work with, she was willing to treat based on symptoms. My only DX was low T3 syndrome, I don't have any known thyroid issues or disease.

1st year she treated me, I started on super duper low dose T3 and very slowly titrated up to what I needed (for me, ended up being about 75 mcg which is a fairly high dose of T3).

Years 2-3 on T3, I stayed around that dose but had to adjust it as needed based on whether I felt I needed more or less of it. I tried switching to Armour a couple of times, but my body would not use T4 (T3 went low and my RT3 went up).

I started Famvir just before year 3. After being on it for a year, I started to feel a little overstimulated on T3 only. So I changed over to mostly Armour with a little bit of T4 to see if my body would use T4. And this time it would. I kept lowering the Armour dose and felt OK, until finally I was on just a tiny dose and my labs were Ok, so I quit taking it and went to T4 only.

Now I'm still on T4 only and am slowly tapering off, checking labs 6-8 weeks after each decrease, and seeing my T3 level is doing well.

Honestly, being on T4 with a little Armour is a lot easier than T3 only. T3 has a lot of ups and downs with it, and as energy metabolism changes, the amount needed can changes quite often. Plus 5x daily dosing is a pain in the butt.

You can get a smaller tab of Armour, 15mg. A 30mg tab might still have too much T3 in it for you (it will have 4-5 mcg of T3). The 5 mcg tabs of liothyronine are easier to split and will be a smaller dose if you quarter them. Armour is crumbly and can be split but does not always behave well.

I have had two friends with viral thyroid issues, and they both went from hypo to hyper fairly swiftly and that is probably what your endo is afraid of. But in the meantime, if you are really hypo, something has to be done to keep you functioning.

ps. I was on a T3 only forum for a long time and learned everything I could about it, and read lots of people's labs. Have learned a lot from it, but am not a doc and can't give any medical advice, just saying what happened with my treatment as there may be something useful in it for you.
 

starlily88

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I have had two friends with viral thyroid issues, and they both went from hypo to hyper fairly swiftly and that is probably what your endo is afraid of. But in the meantime, if you are really hypo, something has to be done to keep you functioning.
Thanks for all the information Bear. So an integrative MD. I lost my Internist last year after 21 years.
All Internists now concierge, other ones are booked. I have called literally every place every hospital, none.

Just had Endo call me on phone. He said to NOT go from 50 mcg to 75mcg Levo, too high, too fast.
Said my reaction to Armour could be similar to Liothyronine - since has T3.
Said person on my group said I can split it up. (didn't tell him 'you' but said on my group).

Told him about testing for the Reverse T3 - and why - he found that interesting.
Says go back to Hopkins Thyroid Dr. - he calls this Dr. himself when he gets "stuck" on very hard cases.

He did not think stress would bring my T4 and T3 down so much. Think he was surprised when he asked me "didn't you tell Dr. (he knows my Endo), and I said - "yep he knows" thinks it is my autoimmune disease.

I know you are not a dr - but I rely much more on what all of you are saying to me.
You have gone thru this - my Endo's haven't.

You have so much incredible knowledge. Hope you don't mind if I keep in touch - to see where this ends:angel::hug::thumbsup: Starlily