Why TSH rises while on T3-only: After I wrote my... - Thyroid UK

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Why TSH rises while on T3-only

Viv123 profile image
13 Replies

After I wrote my last post I unfortunately got into the ER with multiple symptoms. The doctors there didn’t find anything life threatening, they didn’t know anything about Cytomel, or adrenals, or thyroid... I was discharged after 5 hours. The next night after it I got convulsions and shaking body as a reaction to excruciating pain in a shoulder. Would be so relieving to get some answers.

My thyroid tests which I made 1 week ago are following:

FT3 4.02 (3.08 - 6.78)

FT4 9.27 (11.60 - 21.90)

TSH 4.29 (0.27 - 4.20)

I stayed on NDT-only for 2 weeks, then added t3 to It. Because I felt bad, and I found out about issues with RT3, I stopped NDT at all, and stayed on t3-only.

Before I switched to t3 and NDT my TSH was 3.3. I was hypo.

But! After 1 month of Cytomel it’s even higher. What could it mean...? Is there any logic behind?

I decreased my Cytomel yesterday from 20mg to 15. No way I go back to ER again, they are totally useless.

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Viv123 profile image
Viv123
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13 Replies

It just means the dose is too low. Free t3 usually needs to be in the top quarter of the range on T3 only (>5.8). And you've reduced it too, so you'll be worse now. You have to increase slowly, but it would be rare for someone to take less than 50mcg T3 only as the final dose. You didn't really give NDT a chance - you wouldn't see anything after only 2 weeks. It takes at least 6 to see a difference.

Viv123 profile image
Viv123 in reply to Angel_of_the_North

Unfortunately raising the dosage causes severe symptoms. I tried different medications. T4, NDT, T3 - with all of them I stuck on the beginning dose. Otherwise I get absolutely hysterical, not able to survive any kind of small stress, heart palpitations, breathlessness, worse weakness, numbness if I try to move, and a lot of impossible pain. Different from my usual hypo-pain. 6 weeks staying in such state would most likely result in death.

I would really like to understand how TSH becomes higher and higher, when t3 is actually also is getting higher. My previous blood tests of t3 and ft3 were worse then now.

We already get the idea that my adrenals are very low on cortisol and probably my body just can not utilize any thyroid hormones because of it.

If that is the case, would it then show up like these blood results?

Angel_of_the_North profile image
Angel_of_the_North in reply to Viv123

How are your supporting nutrients: B12, folate, ferritin, D3? Taking folic acid (and it is in loads of foods and supplements) is a real no-no for many people as it can block methylation (the real vit B9 is methyl folate) and make you feel dreadful. I'm lucky; I do really well in T3 only even with low cortisol. Are you eating loads of green veg and sufficient protein? Often lacto-* probiotics make people worse and you need the soil or at least non-lacto ones. Worth a look.

Viv123 profile image
Viv123 in reply to Angel_of_the_North

I am eating sort of Paleo, AIP diet and FODMAP diet mix. It includes lots of organic greens and vegetables, chicken/fish almost every meal, 2-3 fruit per day. No grain, no dairy, no soy, no mushrooms. But a lot of coconut and olive oils.

I stopped probiotics on Sunday, maybe they were the wrong kind. Next time I will choose different ones.

My iron test was done in January, the results are mentioned in the 1st post. I didn’t address the small imbalance yet. But I am starting Iron supps very soon.

I will write about my vitamin tests in a separate post. Will you please look at it?

I am glad you feel better on t3, in spite of adrenals being low. How different we all are. I wish you gain good health, and all the members of this forum!

Angel_of_the_North profile image
Angel_of_the_North in reply to Viv123

For probiotics, try ones with bifido bacteria rather than lacto and see if it helps or Saccharomyces boulardii. Some people are sensitive to chicken esp if not organic as caged ones are pumped full of pesticides and anti-biotics, so might be worth trying lamb or wild rabbit as that is usually fairly natural.

Viv123 profile image
Viv123 in reply to Angel_of_the_North

Yes, I had S.Boulardii in my mind. I am eating only biological chicken lately, but you never know. I will try to find wild rabbit. Thank you! I still didn’t post vitamins, will do it today.

Ari3 profile image
Ari3

How dis u find out about rt3 issues?

Viv123 profile image
Viv123 in reply to Ari3

Hi Ari! I tested RT3 twice in blood. First it was high in range and ratio with ft3 was too low. And after I stopped t4 meds my rt3 became low in range and normal ratio.

humanbean profile image
humanbean

I had problems tolerating thyroid meds, and could never raise my dose high enough to feel even remotely well.

My problem was high cortisol, which I identified with an adrenal saliva test done at four points in the day. It is useful to get a DHEA test as well. Such tests (saliva tests which also include a DHEA test as part of the package) are available in the UK through the mail, but I have no idea what options are available where you live. There are some possibilities given on this page, but you would have to seek opinions and reviews yourself :

stopthethyroidmadness.com/r...

Low cortisol can also cause problems with tolerating thyroid meds.

Unfortunately it isn't safe to look at symptoms and decide without testing that the problem is low or high cortisol. Both conditions have several symptoms which are similar. Treating yourself for high cortisol (for example) when cortisol is already low would be disastrous, and vice-versa.

The biggest problem with non-optimal cortisol (in my opinion) is that tolerating stress becomes difficult or impossible. Be aware that if your doctors are anything like those in the UK, they only take patients seriously if they have extreme low cortisol (Addison's Disease) or extreme high cortisol (Cushing's Disease or Cushing's Syndrome). If your cortisol is low in range but not below it, or is high in range or above range but still shows a circadian rhythm, then you are probably on your own when it comes to treating yourself.

I was able to double my T3 dose when I lowered my high cortisol with adaptogens, and overall I felt substantially better.

Viv123 profile image
Viv123 in reply to humanbean

Thank you for your answer, Humanbean! Our doctors here are very similar to yours in UK. My endo checked only my morning cortisol recently and it’s high in range,what is normal, no further tests he can run. I Told him how bad I tolerate stress and he kindly offered to reffer me to a psychiatrist.

I posted my cortisol saliva test here

healthunlocked.com/thyroidu...

Does anything in this test results catch the eye? If you have any comments I would be pleased to read them.

I am having in mind to start adrenal cortex soon. But I am afraid. I think I am not sure if I believe the test. All about adrenal fatigue is new for me and not accepted by endos/emergency rooms/GP’s. Before I step in to it I need to be more prepared. And I think I am almost there. Reading so much about other people’s experience is very convincing!

humanbean profile image
humanbean in reply to Viv123

The most likely reason (in my untrained opinion) for your blood cortisol test and saliva test to give radically different results is because they aren't measuring the same thing.

Many (most? all?) substances that the body needs are carried around the body via the bloodstream attached to transport proteins called globulins. When these substances (e.g. hormones) reach their target the body separates them from their transport proteins to create the active substance the body can use directly.

One of the main transport proteins for cortisol is known as Transcortin :

en.wikipedia.org/wiki/Trans...

When people get serum (blood) tests of cortisol levels the result they get is for Total Cortisol. So it includes cortisol attached to transport proteins (which is how the vast bulk of cortisol is found in the body) PLUS any cortisol which is unattached and therefore active.

Cortisol which is found in saliva is the active (i.e. unattached to transport proteins) cortisol that the body can use.

What people with low active cortisol have found helps them is to raise their level of cortisol by supplementing with adrenal supplements. There are other things that can help e.g. drinking an "adrenal cocktail" - google it, there are many recipes but they are all very similar.

You also need to consider nutrient levels - are they optimised, diet - whether you eat enough protein and fat, whether or not you sleep well,... basically anything which affects physiological stress levels.

You could also read Dr Lam's website : drlam.com/

Click on "About AFS", "Recovery" and "Complications" at the top of the page, and click on the links that you think might be helpful.

You might find some useful links in replies I wrote on this post :

healthunlocked.com/thyroidu...

Viv123 profile image
Viv123 in reply to humanbean

Transcortin is a new word in my dictionary. Thank you, I will learn about it. I 've read a lot of info at drlam's, but I still don't know what to do.

Maybe it's because of my saliva test. If you look at them, you can see at which times I had to make them (5 times). 8am, 10am, 13pm, 16pm and 20pm. The test looks absolutely different from those I see online. And bedtime is not measured at all. Can I consider this test useless? Maybe its best to retest it and this time provide the lab with times I choose myself? But then they probably will not have the ranges specifically for my times.

I can see at drlam's that my symptoms look like adrenal fatigue stage 3. And in this case, he does not recommend to begin with glandular supplements. I have them standing in front of me, and I am afraid to begin, because I am afraid of overstimulation, and that i will win on them... So I am still searching somebody who could comment on my saliva test, and if necessary I would make them at a different lab.

humanbean profile image
humanbean in reply to Viv123

They aren't as scary or as dangerous as you think. I mentioned that I had high cortisol. I sent off my first test samples the day before I went on a two week holiday. I assumed that my results would show low cortisol (this was several years ago before I knew better than to make assumptions) so I took adrenal supplements with me and took them every day while I was away. I coped with taking adrenal supplements even with high cortisol (over the range for every sample), so you should be fine when you are starting from the point of having low cortisol. If you really don't do well then just stop taking them.

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