Thyroid hormons T4/T3, someone else taking it for CFS/ME?

[MAF14]

I would like to point out that my endocrinologist admitted that my full set of thyroid measurements were 'unusual' (some of the measurements, maybe free T4 and T3, were a bit high/low in one test, and reversed in the second one, which he obviously felt was odd enough to be worth mentioning), but then he just brushed that off and said it was Hashimoto's Thyroiditis, take synthroid, end of discussion. That's when I pointed out the other stuff and he got angry. How dare I challenge his amazing diagnosis that must have taken him several seconds to reach? Nope, not impressed with endocrinologists.

A few differences but that was pretty much my interaction with quite a few endo's/internalists

 

[JeanneD]

it looks fine, are you supplemented? with T4 only?

Both liothyronine (T3) and levothryroxine (T4).

 

[pattismith]

Well, I tryed several days with two T3 doses per day...And crashed, feeling poisoned with fatigue, headache, nausea, heaviness...Last time I got this very bad reaction was when I experimented cafeine + ephedrine (fainting), I don't recommend this association, even at low doses for sensitive people...

I struggled all the day at work, before taking T3 and also after the intake...

Needing energy to put forward, I decided to go back with B1 injections at 12h00 AM (I stopped it some weeks ago to do different experimentations, but it has already helped me a lot during the past months).

As usual, 9 hours after the T3 intake, I was struggling increasingly (at 4h00 PM), but suddenly at 6h00 PM, energy came back, 6 hours after the B1 injection....

Hoping that the T3/B1 association will do a better job on me during the next days!

 

[MAF14]

Well, I tryed several days with two T3 doses per day...And crashed, feeling poisoned with fatigue, headache, nausea, heaviness...Last time I got this very bad reaction was when I experimented cafeine + ephedrine (fainting), I don't recommend this association, even at low doses for sensitive people...

I struggled all the day at work, before taking T3 and also after the intake...

Needing energy to put forward, I decided to go back with B1 injections at 12h00 AM (I stopped it some weeks ago to do different experimentations, but it has already helped me a lot during the past months).

As usual, 9 hours after the T3 intake, I was struggling increasingly (at 4h00 PM), but suddenly at 6h00 PM, energy came back, 6 hours after the B1 injection....

Hoping that the T3/B1 association will do a better job on me during the next days!

After talking about that timing issue, this sounds more like an adrenal issue than a thyroid issue. Have you had a diurnal cortisol kit done relatively recently?

 

[pattismith]

After talking about that timing issue, this sounds more like an adrenal issue than a thyroid issue. Have you had a diurnal cortisol kit done relatively recently?

I have done a surrenale stimulation test, which was not bad.

 

[Misfit Toy]

yes of course! This may be the reason why I didn't respond when I did previous trials with T3...

How much did you start all at once? You are only supposed to go up by 5 mcg every 5 to 10 days. So, I think you said you took 6.25 each time? Not sure.

 

[Learner1]

@pattismith Doesn't the surrenale test look for Addison's disease, which most of us don't have?

A 24 hour cortisol test, with saliva or urine has been far more helpful, to me. And much of the advice I've seen is that thyroid is never going to work right unless one deals with adrenals first.

I take hydrocortisone 2- 3 times a day. I seem to have enough from 4-6am, but crash at 8am unless I take 10mg. Then I follow up with another 5-10mg at 11am and 5mg at 3-4pm if I need it.

For thyroid, I take 137mg T4 upon waking, along with 25mg T3. Then another 25mg T3 at 11am with the hydrocortisone. And I take iodine every 3-4 days. I'd been on all T3, but have been trying to get my TSH to move up from .006, and have increased T4 without rT3 rising, but the TSH is still stubbornly low.

All of this upsets the endocrinologist and conventional doctors I've seen recently who'd rather I took no hydrocortisone or T3 and would like my TSH to be normal. However, I function best on my current protocol and my ME/CFS doctor and functional medicine doctor both think this is right for me.

It seems that most doctors are not aware of Euthyroid sick thyroid syndrome. Here are some resources about it and abnormal HPA axis in ME/CFS:

https://www.ballardplazapharmacy.com/chronic-fatigue.html

http://www.mdedge.com/ccjm/article/95238/endocrinology/approach-low-tsh-level-patience-virtue

https://academic.oup.com/jcem/article/84/1/151/2866194/Dangerous-Dogmas-in-Medicine-The-Nonthyroidal

http://emedicine.medscape.com/article/118651-overview#a5

https://www.karger.com/Article/Abstract/104468

Reverse T3 tends to rise with stress of various types. T3 works to bring it down

 

[pattismith]

@pattismith Doesn't the surrenale test look for Addison's disease, which most of us don't have?

I did a simple surrenale test, with only blood cortisol control. Blood aldosterone testing is better in order to control if you need supplementing with fludrocortisone.

A 24 hour cortisol test, with saliva or urine has been far more helpful, to me. And much of the advice I've seen is that thyroid is never going to work right unless one deals with adrenals first.
I take hydrocortisone 2- 3 times a day. I seem to have enough from 4-6am, but crash at 8am unless I take 10mg. Then I follow up with another 5-10mg at 11am and 5mg at 3-4pm if I need it.

I already thought I could do a trial with fludrocortisone, but fludrocortisone makes your blood potassium falling, and mine is low limit, so I'm not convinced yet that I should do it.
However, since I started T3, I stopped suplementing with KCL, and my level seems to improve, so I keep an eye on it...

For thyroid, I take 137mg T4 upon waking, along with 25mg T3. Then another 25mg T3 at 11am with the hydrocortisone. And I take iodine every 3-4 days. I'd been on all T3, but have been trying to get my TSH to move up from .006, and have increased T4 without rT3 rising, but the TSH is still stubbornly low.

Thank you very much for giving us your protocol. it is given by knowledgeable doctors, and it had shown to help you a lot, so it is precious informations!
By the way, I can't understand how your TSH would rise if you are supplementing with T3+T4. I would rather imagine that supplementing decreases TSH. I think it is the way it works for hypothyroid patients.

All of this upsets the endocrinologist and conventional doctors I've seen recently who'd rather I took no hydrocortisone or T3 and would like my TSH to be normal. However, I function best on my current protocol and my ME/CFS doctor and functional medicine doctor both think this is right for me.

I guess it did!

It seems that most doctors are not aware of Euthyroid sick thyroid syndrome. Here are some resources about it and abnormal HPA axis in ME/CFS:

Thank you for the links you gave, it helped me a lot!
However, I am more convinced we are suffering from cellular hypothyroidism or thyroid hormon resistance than from Euthyroid Sick Syndrome the way it is defined by the medical consensus.
Anyway, it doesn't change the fact that thyroid hormons are one of the keys that can help us functionning better!

 

[pattismith]

How much did you start all at once? You are only supposed to go up by 5 mcg every 5 to 10 days. So, I think you said you took 6.25 each time? Not sure.

Thank you for the advise, it seems a wise one to follow!

 

[pattismith]

just received my rT3: 0.49 µg/l (normal 0.09-0.35)
and my TBG 24.9 µg/ml (normal 10.9-27.1)

 

[MAF14]

just received my rT3: 0.49 µg/l (normal 0.09-0.35)
and my TBG 24.9 µg/ml (normal 10.9-27.1)

If you're RT3 is that high it's no wonder T3 isn't helping much... Could be a tricky balancing act though. You need more T3 to suppress TSH and T4 production

EDIT: I still think I diurnal cortisol kit would be wise to take though

 

[pattismith]

If you're RT3 is that high it's no wonder T3 isn't helping much... Could be a tricky balancing act though. You need more T3 to suppress TSH and T4 production

you mean "T4 isn't helping much" or "T3 isn't helping much"?:thumbdown:

edit:
My rT3: 0.49 µg/l (normal 0.09-0.35) = 750 pmol/l
My fT3 = 1.9 pg/ml = 2,9 pmol/l

so my fT3/ rT3 ratio = 2.9/750 x 100 = 0.387 it seems very low... (normal ranges 1.200 – 2.200)

 

[MAF14]

you mean "T4 isn't helping much" or "T3 isn't helping much"?:thumbdown:

edit:
My rT3: 0.49 µg/l (normal 0.09-0.35) = 750 pmol/l
My fT3 = 1.9 pg/ml = 2,9 pmol/l

so my fT3/ rT3 ratio = 2.9/750 x 100 = 0.387 it seems very low... (normal ranges 1.200 – 2.200)

I meant the T3 isn't helping much.... Addressing WHY you have high RT3 should be your main goal at this point. Again it sounds like you have adrenal issues and I would HIGHLY recommend a diurnal cortisol kit.

-Taking T4 will only exacerbate problems if you have RT3 problems.
-T4 will convert to T3 or RT3
-Taking ENOUGH T3 will suppress TSH so that your body stops producing it's own T4
-Once there is no/low T4, there will be no/low RT3 and the T3 can do its job

 

[pattismith]

I meant the T3 isn't helping much.... Addressing WHY you have high RT3 should be your main goal at this point. Again it sounds like you have adrenal issues and I would HIGHLY recommend a diurnal cortisol kit.

-Taking T4 will only exacerbate problems if you have RT3 problems.
-T4 will convert to T3 or RT3
-Taking ENOUGH T3 will suppress TSH so that your body stops producing it's own T4
-Once there is no/low T4, there will be no/low RT3 and the T3 can do its job

yes, so T3 IS helping in that case (well it does actually)

Now that I am back on my mito cocktail, T3 is working better, I just hope I will avoid the Ubiquinol headache I experienced in the past

 

[MAF14]

yes, so T3 IS helping in that case (well it does actually)

Now that I am back on my mito cocktail, T3 is working better, I just hope I will avoid the Ubiquinol headache I experienced in the past

Ah, for some reason I thought you were still taking T4. But yeah, if so I would discontinue T4.

What is your mito cocktail?

 

[pattismith]

Ah, for some reason I thought you were still taking T4. But yeah, if so I would discontinue T4.

What is your mito cocktail?

My experimentation with T4 stopped days before I received my rT3 results, I realized very quickly it was making things worse, I know why now!

My mito cocktail is

Thiamine inj
Riboflavine
Lipoic acid
Carnitine
Ubiquinol
Quercitine
multivitamin
magnesium

 

[wastwater]

I just take t4 and it doesn’t do much,but I’m a bit better with than without
I understood the (no antibodies)hypothyroidism in me/cfs to be caused potentially by high IL-2 T cell growth factor as mentioned in oslers web but this doesn’t seem to match current findings that don’t mention IL-2
At one point I felt I could understand me/cfs as the side effects of IL-2 but research hasn’t gone that way

 

[BadBadBear]

I take T3. Using the circadian dosing protocol has helped me a lot, it definitely supports weak adrenal function. It might be helpful. If you are interested, look up Paul Robinson Circadian T3 Method.

The other thing is that for me, titration was really tough, and I felt worse swinging from hypo to normal and back to hypo. It got a lot better when the dose got closer to being right.

That said, I worked up my dose slowly and it took over a year to really dial it in. I feel like trying to test it over a week or two really isn't nearly enough time.

There is also a very tough phase to get through when you start taking enough to suppress T4, but are not at a full dose yet. For me that happens around 30 mcg and I am guaranteed hypo between 30 mcg and my optimal dose.

After I was on the full dose, I felt like it kicked off a couple years of healing process. I didn't get totally well, but I am significantly better on T3.

I have had labs with low T3, and then last time I was off of T3 my T4 level was low. TSH is always good. I think either my pituitary has a loose screw or my hypothalamus...

Anyway, that's all I can write. . Cheers.

 

[Gondwanaland]

https://www.drlam.com/articles/7mistakesofadrenalfatigue.asp
Thyroid medications are widely prescribed by physicians to symptomatically control sluggish metabolism associated with hypothyroidism. Their use is justified by conventional medicine based on laboratory tests that show reduced thyroid function evidenced by high levels of TSH and low levels of Free T3 and Free T4. Dysfunctional adrenal glands are often totally ignored. Those suffering from Adrenal Fatigue and hypothyroidism are treated for hypothyroidism alone. Over time this approach backfires and causes the Adrenal Fatigue condition to worsen for several reasons. First, thyroid replacement medications increase the overall basal metabolic rate. The body is put into a state of over-drive. No organ system is spared. Pushing the adrenals to work harder when they are already fatigued can unmask adrenal exhaustion or even trigger an adrenal crisis.At the same time, weak adrenals can lead to a state of blunted response by the body to thyroid hormones. Weak adrenals are often associated with reduced availability of free thyroid hormone to the cells as well. As a result, symptoms of hypothyroidism often fail to improve over time and may in fact get worse with this single organ approach to healing. The patient remains symptomatic even when placed on thyroid replacement therapy. Physicians focusing on the thyroid without considering the adrenals frequently find themselves administering ever higher doses of thyroid replacement medication or switching from one medication to another without success. It is important to remember that those who are placed on thyroid medication should not abruptly stop the medication without professional help due to possible unpleasant withdrawal effects.

@picante @Mary @ahmo

Generation of rT3 is a defense mechanism of the body when it can't cope with increased energy.
http://www.tiredthyroid.com/rt3-7.html

 

[Mary]

Interesting @Gondwanaland - thanks! I do take an adrenal glandular which helps, in addition to dessicated thyroid.

Last week I went to an acupuncturist for sleep as nothing was helping that had formerly helped me, and I think it helped the first night. He recommended we plan on 5 or 6 visits and then see how I was doing. I also started doing self-acupressure on a few points for sleep and I think that is helping too. In any event I am sleeping better than when I first saw him! Am crossing my fingers --