Interesting reading on "normal" TSH and CFS/fibro and inflammatory diseases

[jess100]

I just came across this and I'm posting it because it seems to answer the question I've seen so many times about thyroid involvement and CFS/ME. So many people ask if they can feel bad but have normal TSH levels. This answers all of it-and the relationship to chronic illnesses. There is WAY more on the website-it is very much worth reading.....I'm just posting enough to show the basic premise and how to find the page. I wish I had found this years ago
https://www.nahypothyroidism.org/deiodinases/#depression

Deiodinase type I (D1)
D1 converts inactive T4 to active T3 throughout the body, but D1 is not a significant determinant of pituitary T4 to T3 conversion, which is controlled by D2 (1,7,10). D1 but not D2 is suppressed and down-regulated (decreasing T4 to T3 conversion) in response to physiologic and emotional stress (11-22); depression (23-45); dieting (46-51); weight gain and leptin resistance (47-91); insulin resistance, obesity and diabetes (91-99); inflammation from autoimmune disease or systemic illness (11,100,102-115); chronic fatigue syndrome and fibromyalgia (121-125); chronic pain (116-120); and exposure to toxins and plastics (126-134). In the presences of such conditions there are reduced tissue levels of active thyroid in all tissues except the pituitary. The reduced thyroid tissue levels with these conditions is often quoted as a beneficial response that lowers metabolism and thus does not require treatment, but there is no evidence to support such a stance while there is significant evidence demonstrating it is a detrimental response (135-142).

In addition, D1 activity is also lower in females (143,144), making women more prone to tissue hypothyroidism, with resultant depression, fatigue, fibromyalgia, chronic fatigue syndrome, and obesity despite having normal TSH levels.

 

[Wishful]

My Tsh was normal before my problems started. Now it's mildly elevated (5-8) but I don't have standard hypothyrodism symptoms (my preferred room temperature is 12C) and T4 and T3 supplements have no effect on my symptoms. What does work is T2 (3-5 diiodothyronine) or iodine (some of which gets converted to T2). Every three weeks, my symptoms increase significantly, and stay high until I take some T2 or iodine. This should mean something to the right expert.

 

[mermaid]

I have been diagnosed with primary hypothyroidism some 20+ years ago now, but despite treatment with thyroid hormone am still ill (also later diagnosed with ME/CFS). I suspect that this article explains some of my issues with thyroxine as I believe I don't convert well. My TSH did go up at one point but was mostly in the normal range once treated with thyroxine.

I was on T4 only for 17 years, with a lot of fatigue and related symptoms, then on T3 only for 4 years, with some improvement a bit up and down - but I think there are a lot of low cortisol issues too. Currently am on NDT for a couple of months, but not doing very well so far on it probably due to the conversion issues again. I am trying to improve my cortisol levels to help....very difficult to put it all right it seems.

 

[grapes]

My Tsh was normal before my problems started. Now it's mildly elevated (5-8) but I don't have standard hypothyrodism symptoms (my preferred room temperature is 12C) and T4 and T3 supplements have no effect on my symptoms. What does work is T2 (3-5 diiodothyronine) or iodine (some of which gets converted to T2). Every three weeks, my symptoms increase significantly, and stay high until I take some T2 or iodine. This should mean something to the right expert.

Wait, a TSH of 5-8 is not "slightly" elevated. That is high! You need read what I found: http://www.stopthethyroidmadness.com/tsh-why-its-useless

 

[Wishful]

My doctor told me my TSH was 'borderline hypothyroid'. Actually, that was what several GPs and one endocrinologist said. Several insisted that I go on T4 even though I told them I'd already tried it for months, with no noticeable effect. I also tried dessicated thyroid hormone, after reading the debate about T3&4: same lack of effect. The endocrinologist admitted that my T4&3 and free T3 readings were 'unusual' (they varied in unusual ways), but when I explained that I had some sort of neuroinflammation that would result in elevated TSH he got angry that I was questioning his professional expertise. He wanted an easy answer, which was hypothyroidism, easily solved by signing a prescription form. Later GPs also did not want to hear that it wasn't a simple problem and solution.

 

[grapes]

My doctor told me my TSH was 'borderline hypothyroid'. Actually, that was what several GPs and one endocrinologist said. Several insisted that I go on T4 even though I told them I'd already tried it for months, with no noticeable effect. I also tried dessicated thyroid hormone, after reading the debate about T3&4: same lack of effect. The endocrinologist admitted that my T4&3 and free T3 readings were 'unusual' (they varied in unusual ways), but when I explained that I had some sort of neuroinflammation that would result in elevated TSH he got angry that I was questioning his professional expertise. He wanted an easy answer, which was hypothyroidism, easily solved by signing a prescription form. Later GPs also did not want to hear that it wasn't a simple problem and solution.

The crazy thing is that thyroid people in groups report a normal TSH for a long time while having hypo. It's more about the free T3 and free T4 and symptoms. And if desiccated thyroid didn't have an effect, I bet you didn't raise it high enough.

 

[Wishful]

Oh, I did raise it higher than the prescribed dosage. I didn't feel that the doctors knew what they were doing, so I felt okay about experimenting with higher doses (doing my reading beforehand). My free Tx readings were sometimes normal when TSH was high, so it wasn't a problem of not enough hormone. My T2 is apparently not high enough, according to how supplementing it helps.

The questions I would like to have asked my endocrinologist are:
1. If a normal, healthy patient came in, what would his TSH be?
2. If that same patient came in with a severe flu (high fever), what would his TSH be then?

I believe that I have elevated kynurenines, including picolinic acid. Elevated picolinic acid raises MIPS-1, which elevated TRH, which elevates TSH. So I think my elevated TSH is 'normal' for someone with neuroinflammation. BTW, I did have a serum cytokine profile done, and it did show elevated MIPS-1 alpha and beta. IFN-g was normal at that point, so it wasn't t-cells being activated.

 

[grapes]

Yeah, the problem with any endo's answer is that both healthy and badly hypothyroid patients can have a great TSH. For some, the TSH is last thing to go up with hypothyroid, if it ever does. A lot of hypo sick people out there with a good looking TSH. By the way, an elevated TSH with inflammation can mean there's an elevated RT3, and the latter can cause to go up because the higher the RT3 is, the more hypo we become.

 

[pattismith]

I just came across this and I'm posting it because it seems to answer the question I've seen so many times about thyroid involvement and CFS/ME. So many people ask if they can feel bad but have normal TSH levels. This answers all of it-and the relationship to chronic illnesses. There is WAY more on the website-it is very much worth reading.....I'm just posting enough to show the basic premise and how to find the page. I wish I had found this years ago
https://www.nahypothyroidism.org/deiodinases/#depression

Deiodinase type I (D1)
D1 converts inactive T4 to active T3 throughout the body, but D1 is not a significant determinant of pituitary T4 to T3 conversion, which is controlled by D2 (1,7,10). D1 but not D2 is suppressed and down-regulated (decreasing T4 to T3 conversion) in response to physiologic and emotional stress (11-22); depression (23-45); dieting (46-51); weight gain and leptin resistance (47-91); insulin resistance, obesity and diabetes (91-99); inflammation from autoimmune disease or systemic illness (11,100,102-115); chronic fatigue syndrome and fibromyalgia (121-125); chronic pain (116-120); and exposure to toxins and plastics (126-134). In the presences of such conditions there are reduced tissue levels of active thyroid in all tissues except the pituitary. The reduced thyroid tissue levels with these conditions is often quoted as a beneficial response that lowers metabolism and thus does not require treatment, but there is no evidence to support such a stance while there is significant evidence demonstrating it is a detrimental response (135-142).

In addition, D1 activity is also lower in females (143,144), making women more prone to tissue hypothyroidism, with resultant depression, fatigue, fibromyalgia, chronic fatigue syndrome, and obesity despite having normal TSH levels.

Also common polymorphism on the DIO1 gene impairs DIO1 activity!


"Results: A SNP in the DIO1 gene, rs2235544, was associated with the free T3 to free T4 ratio with genome-wide levels of significance (P = 3.6 × 10−13). The C-allele of this SNP was associated with increased deiodinase 1 (D1) function with resulting increase in free T3/T4 ratio and free T3 and decrease in free T4 and rT3. There was no effect on serum TSH levels. None of the SNPs in the genes coding for D2 or D3 had any influence on hormone levels.

Conclusions: This study provides convincing evidence that common genetic variation in DIO1 alters deiodinase function, resulting in an alteration in the balance of circulating free T3 to free T4. This should prove a valuable tool to assess the relative effects of circulating free T3 vs. free T4 on a wide range of biological parameters."

 

[grapes]

Yes, this is the page with information that changed my thinking about the so-called normal TSH: http://stopthethyroidmadness.com/tsh-why-its-useless

 

[pattismith]

My doctor told me my TSH was 'borderline hypothyroid'. Actually, that was what several GPs and one endocrinologist said. Several insisted that I go on T4 even though I told them I'd already tried it for months, with no noticeable effect. I also tried dessicated thyroid hormone, after reading the debate about T3&4: same lack of effect. The endocrinologist admitted that my T4&3 and free T3 readings were 'unusual' (they varied in unusual ways), but when I explained that I had some sort of neuroinflammation that would result in elevated TSH he got angry that I was questioning his professional expertise. He wanted an easy answer, which was hypothyroidism, easily solved by signing a prescription form. Later GPs also did not want to hear that it wasn't a simple problem and solution.

you may find some explanations to your thyroid panel in this table:

http://forums.phoenixrising.me/index.php?threads/thyroid-adaptation-in-various-conditions.57635/