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My thyroid panels have been really strange here lately. I have been having low TSH and low free T4.

My NP thinks that my thyroid is just not producing hormones because I've been supplementing with levothyroxine, but agreed that I might need an endocrinologist to look at me.

He doesn't think it's Hashimoto's thyroiditis though. He agreed that it could be central hypothyroidism (pituitary isn't producing any TSH...)

Anyone here have any guesses? I know no one here can diagnose, but just wondered if anyone could speculate.

I have a history of low testosterone, but currently my testosterone is low-normal.

He recently increased my levothyroxine from 100 mcg to 125 mcg as a result of my thyroid panel.

Should I just see an endocrinologist? The closest ones that are any good are a few cities over, and the one my dad sees who is also really good is about an hour and a half drive away.

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@mikl_pls

What do you mean supplementing with levothyroxine? 

Any idea why he ruled out Hashimoto's? I have that. 

Was your TSH very high when you last had it checked and that is why your NP increased your levothyroxine? I know my endocrinologist Dr says it's very easy to overshoot by increasing the dose of levothyroxine too high. That causes the opposite of hypothyroidism to occur and low TSH levels to occur. 

Either way, I'd definitely recommend a good endocrinologist dr. Mine has had me get ultrasounds on my thyroid/neck to check for anything unusual or abnormal or nodules. Luckily I just have excess tissue on my thyroid. This is what I was told. I had two ultrasounds. I do have some difficulty swallowing at times because of this. 

I'm sorry there are no endocrinologist Drs near you. That really sucks. Can you telemedicine with one? Sorry just trying to think outside the box here. 

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Have you ever had imagining to check for thyroid nodules? A simple ultrasound may suffice, like Cheese said. Just a thought.

All in all, I think it's best to rely on an endo, if there isn't one near, I would ask whether there's a nuclear medicine lab near instead, they do thyroid tests where I live. You'd still need an endo after, but at least you'd have test results that would hopefully speed things up. 

Good luck and hope you get to the bottom of it soon! 

Edited by ShameShameShame
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12 hours ago, Wonderful.Cheese said:

What do you mean supplementing with levothyroxine? 

Oh, I meant simply that I've been prescribed levothyroxine and that I've been taking it. My bad.

12 hours ago, Wonderful.Cheese said:

Was your TSH very high when you last had it checked and that is why your NP increased your levothyroxine? I know my endocrinologist Dr says it's very easy to overshoot by increasing the dose of levothyroxine too high. That causes the opposite of hypothyroidism to occur and low TSH levels to occur.

Actually, come to think of it, my TSH has always been low, along with low T4 levels.

12 hours ago, Wonderful.Cheese said:

Either way, I'd definitely recommend a good endocrinologist dr. Mine has had me get ultrasounds on my thyroid/neck to check for anything unusual or abnormal or nodules. Luckily I just have excess tissue on my thyroid. This is what I was told. I had two ultrasounds. I do have some difficulty swallowing at times because of this. 

I'm sorry there are no endocrinologist Drs near you. That really sucks. Can you telemedicine with one? Sorry just trying to think outside the box here. 

I might be able to telemedicine with one. I don't mind driving an hour or so to one. I do it all the time with my other specialist doctors.

5 hours ago, ShameShameShame said:

Have you ever had imagining to check for thyroid nodules? A simple ultrasound may suffice, like Cheese said. Just a thought.

I have not had an ultrasound, that is a good idea.

5 hours ago, ShameShameShame said:

Good luck and hope you get to the bottom of it soon! 

Thanks!

Thank you both for your input, @Wonderful.Cheese and @ShameShameShame!

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@mikl_pls no problem. I hope you can see a good endocrinologist dr soon. I’m just sorry you have to drive so far to see your specialist drs. But I guess it is worth it in the long run. 

I have a really good endocrinologist dr. He treats my symptoms, not just my TSH levels. Because last time they were checked they were on the very highest end of normal but I was having symptoms of the Hashimoto’s disease so he said we could try an increase in the levothyroxine anyway. And it really has helped a lot. I’m only on 50 mcg anyway. So I doubt that we overshot the dose. 

ANYWAY, are you having symptoms with your TSH being so low? I’m just curious because I don’t know what to look for if that were to happen. I hope you aren’t feeling too terrible. And I hope you don’t have to wait terribly long to get in to see a good endocrinologist dr. 

Thinking of you. <3 Thyroid issues suck. I mean literally. They can literally suck the life out of a person. 

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18 minutes ago, Wonderful.Cheese said:

I hope you can see a good endocrinologist dr soon. I’m just sorry you have to drive so far to see your specialist drs. But I guess it is worth it in the long run. 

I'll see about asking for a referral once I see who around me is good and all. Huntsville is likely going to be the closest city, which is an hour away, but Birmingham is where my dad's endocrinologist is, which is who I'd likely go to see. (It'd be an hour and a half to see him.)

21 minutes ago, Wonderful.Cheese said:

I have a really good endocrinologist dr. He treats my symptoms, not just my TSH levels. Because last time they were checked they were on the very highest end of normal but I was having symptoms of the Hashimoto’s disease so he said we could try an increase in the levothyroxine anyway. And it really has helped a lot. I’m only on 50 mcg anyway. So I doubt that we overshot the dose.

That's really good. I have a bad feeling I might have a problem with my pituitary gland. I don't know if pituitary adenomas are hereditary or not, but my dad has one that is a prolactinoma. I wonder if I have a pituitary adenoma that is causing my pituitary to not secrete as much TSH as it should... thereby causing central hypothyroidism... I've had MRIs before, but probably not an MRI that would show my pituitary gland.

I've also never had any scans, or blood panels, that I know of that would show whether I have Hashimoto's.

25 minutes ago, Wonderful.Cheese said:

ANYWAY, are you having symptoms with your TSH being so low? I’m just curious because I don’t know what to look for if that were to happen. I hope you aren’t feeling too terrible. And I hope you don’t have to wait terribly long to get in to see a good endocrinologist dr. 

I don't know what the symptoms are of low TSH versus low T4/T3 are. I am having symptoms of low thyroid hormones, namely weight gain/difficulty losing weight (even on 60 mg of Dexedrine!), fatigue, poor memory/concentration, hoarse voice, hair loss (both on head and in beard). Also my toenails (but not fingernails) are breaking and growing in weakly. I don't feel too terrible, but then again, I think my medicines are probably making up for a good deal of it (Dexedrine, antidepressants, antipsychotic, etc.)

32 minutes ago, Wonderful.Cheese said:

Thinking of you. <3 Thyroid issues suck. I mean literally. They can literally suck the life out of a person. 

Thanks! :) Yes they can! I have observed this first hand! My mom has hypothyroidism and because she has osteoporosis, her doctor can't raise her thyroid hormone dose above a certain level, so she has to just endure the symptoms of hypothyroidism. She, at one point, I remember, was on 300 mcg of levothyroxine. I bet that was too high...

 

I did a little research, and apparently my medicines just might be playing a little into screwing with my thyroid hormones.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2784889/

Quote

Table 1

Drugs known to affect thyroid function in patients with an intact hypothalamic-pituitary-thyroid axis. Mechanism of action in italics.

[...]

TSH suppression

Glucocorticoids

Dopamine agonists (Abilify is a dopamine partial agonist)

Somatostatin anologs

Rexinoids

Carbamazepine/Oxcarbemazepine?

Metformin?

[...]

? - not verified by multiple studies.investigators

 

Quote

Drugs that affect thyroid function in patients taking levothyroxine. Mechanism of action in italics

[...]

Increased hepatic metabolism

Phenobarbital

Phenytoin

Carbemazepine [Oxcarbazepine???]

[....]

Inhibition of 5'deiodinase

Propylthiouracil

Methimazole

Propranolol (still take this PRN...)

Glucocorticoids

[...]

 

Quote

Drugs that suppress serum TSH levels

Dopamine/bromocryptine

Dopamine used in critical illness and the dopamine agonist bromocryptine used for disorders like hyperprolactinemia can suppress serum TSH. Bromocyptine has been shown to reduce serum TSH in patients with selective pituitary resistance to thyroid hormone.

Dopamine exerts its effects on the hypothalamic-pituitary-thyroid axis through the activation of dopamine D2 receptors (D2R), but appears to have opposite effects on the hypothalamus and the pituitary thyrotrope. Dopamine infusions in healthy volunteers reduces TSH pulse amplitude without significantly altering TSH pulse frequency. Bromocryptine appears to have the same effect on TSH pulse amplitude and is likely occurring through the same D2R mechanism. Interestingly, dopamine stimulates release of TRH from rat hypothalamus through the same D2R, but the overall effect of dopamine is to lower serum TSH so this direct stimulatory effect on the hypothalamus cannot override the inhibitory effect of dopamine on the pituitary. Prolonged treatment with bromocriptine does not appear to cause central hypothyroidism since many patients treated with bromocryptine for macroprolactinomas actually have resolution of central hypothyroidism caused by the adenoma. Studies using dopamine infusions in critically ill adults and neonates with the nonthyroidal illness (NTI) syndrome suggest that dopamine and NTI have an additive effect of HPT axis suppression. This may lead to iatrogenic central hypothyroidism in these patients. It is not clear whether treatment with levothyroxine is indicated in patients with NTI who are receiving dopamine infusions.

[...]

Other medications that may affect TSH levels

Certain antiepileptic medications including carbemazepine, oxcarbemazepine, and valproic acid increase metabolism of thyroid hormones through the hepatic P450 system, but may also alter pituitary responsiveness to hormonal feedback and cause central hypothyroidism. Other investigators have shown that the hypothalamic-pituitary axis is not affected by these medications and a specific mechanism has not been identified, so it remains controversial if these drugs affect thyrotrope function and serum TSH levels in humans.

Recent observational studies have suggested that metformin can lower serum TSH levels. One study demonstrated this effect only in type 2 diabetics who also had hypothyroidism, but not in patients with normal thyroid function. This effect may be through altered free T4 levels in patients who are hypothyroid, but the exact mechanism is not known.

 

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As far as hashimotos showing up on panels, I may not have it right, but perhaps unspecific inflammation markers like the ANA test, or sedimentation rates or hs-CRP could point to it? I'm not sure if hashimotos necessarily causes overall inflammation, but if it does those markers could be elevated and some, like sedimentation, are done routinely, perhaps the last time you've had blood drawn for whatever reason. They're unspecific of course so they wouldn't tell *where* your inflammation is and whether it's really from your thyroid. 

Otherwise I only know of tests for thyroid antibodies, I guess an endo would check for that. 

I really hope it's not more complicated or a pituarity tumor. Thyroid issues sound unpleasant enough! 

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4 hours ago, ShameShameShame said:

As far as hashimotos showing up on panels, I may not have it right, but perhaps unspecific inflammation markers like the ANA test, or sedimentation rates or hs-CRP could point to it? I'm not sure if hashimotos necessarily causes overall inflammation, but if it does those markers could be elevated and some, like sedimentation, are done routinely, perhaps the last time you've had blood drawn for whatever reason. They're unspecific of course so they wouldn't tell *where* your inflammation is and whether it's really from your thyroid. 

Otherwise I only know of tests for thyroid antibodies, I guess an endo would check for that. 

I really hope it's not more complicated or a pituarity tumor. Thyroid issues sound unpleasant enough! 

Thank you for this information! :D This gives me much-needed insight!

Yes, indeed they are!

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