Respiratory muscle weakness due to Cushings Disease

[Barbarossa]

Guys I have a big problem,

I have high Acth and Cortisol labs, and a pituitary gland Tumor.
Can Cushings disease cause respiratory muscle weakness or breathing problems?
My oximeter shows 98% spo2
My autonomic breathing is not functioning so good.
I am breathless even if I am lying down.
When I am breathing in a mask or in a paper bag, it calms my nervous system down to not breathing too much oxygen(hyperventilation).
I have to force me to breathe deeply and satisfyingly.

I have also Hypothyroidism with very good Tsh, and ft3, ft4 levels. tsh under 1 to 0, ft3,ft4 70-100% of the reference range.

What can I do?

 

[Perry Staltic]

My autonomic breathing is not functioning so good.

Need thiamine?

 

[redsun]

Guys I have a big problem,

I have high Acth and Cortisol labs, and a pituitary gland Tumor.
Can Cushings disease cause respiratory muscle weakness or breathing problems?
My oximeter shows 98% spo2
My autonomic breathing is not functioning so good.
I am breathless even if I am lying down.
When I am breathing in a mask or in a paper bag, it calms my nervous system down to not breathing too much oxygen(hyperventilation).
I have to force me to breathe deeply and satisfyingly.

I have also Hypothyroidism with very good Tsh, and ft3, ft4 levels. tsh under 1 to 0, ft3,ft4 70-100% of the reference range.

What can I do?

Get the tumor removed.

 

[Barbarossa]

Get the tumor removed.

No doctor want it to remove, because they want 100% accurate labs ( it’s disgusting…

 

[Barbarossa]

Get the tumor removed.

No doctor want it to remove, because they want 100% accurate labs ( it’s disgusting

Need thiamine?

i take 200-300 mg of thiamine every day, should I take more?

 

[redsun]

No doctor want it to remove, because they want 100% accurate labs ( it’s disgusting

i take 200-300 mg of thiamine every day, should I take more?

Your lab is not accurate? Surely you can find someone.

 

[Blossom]

Guys I have a big problem,

I have high Acth and Cortisol labs, and a pituitary gland Tumor.
Can Cushings disease cause respiratory muscle weakness or breathing problems?
My oximeter shows 98% spo2
My autonomic breathing is not functioning so good.
I am breathless even if I am lying down.
When I am breathing in a mask or in a paper bag, it calms my nervous system down to not breathing too much oxygen(hyperventilation).
I have to force me to breathe deeply and satisfyingly.

I have also Hypothyroidism with very good Tsh, and ft3, ft4 levels. tsh under 1 to 0, ft3,ft4 70-100% of the reference range.

What can I do?

Perhaps elevated cortisol has impacted your muscles. Edema in your face, neck and torso can also make it hard to breathe.

 

[Barbarossa]

Your lab is not accurate? Surely you can find someone.

I was in best hospitals in Germany and went to best cushings doctors no one want to help me , and I went to best pituitary surgeons they want 100 percent accuracy!!

 

[Blossom]

I am breathless even if I am lying down.

You may also want to consider inclined bed therapy until you can get a proper doctor to deal with the tumor. You may be having some airway obstruction when you are lying down.

 

[Perry Staltic]

i take 200-300 mg of thiamine every day, should I take more?

From what I've read some people would think so, but I personally don't know.

 

[tankasnowgod]

Guys I have a big problem,

I have high Acth and Cortisol labs, and a pituitary gland Tumor.
Can Cushings disease cause respiratory muscle weakness or breathing problems?
My oximeter shows 98% spo2
My autonomic breathing is not functioning so good.
I am breathless even if I am lying down.
When I am breathing in a mask or in a paper bag, it calms my nervous system down to not breathing too much oxygen(hyperventilation).
I have to force me to breathe deeply and satisfyingly.

I have also Hypothyroidism with very good Tsh, and ft3, ft4 levels. tsh under 1 to 0, ft3,ft4 70-100% of the reference range.

What can I do?

I think Peat has stated that a high oximeter reading can be indicative of low CO2, and so oxygen not getting to muscles and other organs. The fact that bag breathing helps seems to back up this idea. Anything that increases CO2, like bag breathing, buteyko techniques, and carbonic anhydrase inhibitors could be something to look into.

Also, of note, I found a few studies recently suggesting that Cabergoline could shrink pituitary tumors, without surgery-

Treatment of Pituitary and Other Tumours with Cabergoline: New Mechanisms and Potential Broader Applications

Abstract. Cabergoline is a dopamine agonist that has been used as the first-line treatment option for prolactin-secreting pituitary adenomas for several decades. It not only suppresses hormone production from these prolactinomas, but also causes tumour shrinkage. Recent studies revealed some...

www.karger.com

Cabergoline: a first-choice treatment in patients with previously untreated prolactin-secreting pituitary adenoma - PubMed

Cabergoline (CAB) treatment is an effective, safe and well tolerated approach for hyperprolactinemia. We investigated the efficacy of 24-month treatment with CAB in 37 patients with previously untreated PRL-secreting pituitary adenoma and evaluated the hormonal and neuroradiological changes...

pubmed.ncbi.nlm.nih.gov

Getting prolactin checked might be a good idea, that could give you more indication of if you have some sort of pituitary tumor. I know Cyproheptadine has also been suggested to lower cortisol (by lowering ACTH), and is a treatment for Cushings. Haidut also wrote this on blocking cortisol-

Blocking cortisol may treat even terminal cancers – To Extract Knowledge from Matter

 

[Barbarossa]

I think Peat has stated that a high oximeter reading can be indicative of low CO2, and so oxygen not getting to muscles and other organs. The fact that bag breathing helps seems to back up this idea. Anything that increases CO2, like bag breathing, buteyko techniques, and carbonic anhydrase inhibitors could be something to look into.

Also, of note, I found a few studies recently suggesting that Cabergoline could shrink pituitary tumors, without surgery-

Treatment of Pituitary and Other Tumours with Cabergoline: New Mechanisms and Potential Broader Applications

Abstract. Cabergoline is a dopamine agonist that has been used as the first-line treatment option for prolactin-secreting pituitary adenomas for several decades. It not only suppresses hormone production from these prolactinomas, but also causes tumour shrinkage. Recent studies revealed some...

www.karger.com

Cabergoline: a first-choice treatment in patients with previously untreated prolactin-secreting pituitary adenoma - PubMed

Cabergoline (CAB) treatment is an effective, safe and well tolerated approach for hyperprolactinemia. We investigated the efficacy of 24-month treatment with CAB in 37 patients with previously untreated PRL-secreting pituitary adenoma and evaluated the hormonal and neuroradiological changes...

pubmed.ncbi.nlm.nih.gov

Getting prolactin checked might be a good idea, that could give you more indication of if you have some sort of pituitary tumor. I know Cyproheptadine has also been suggested to lower cortisol (by lowering ACTH), and is a treatment for Cushings. Haidut also wrote this on blocking cortisol-

Blocking cortisol may treat even terminal cancers – To Extract Knowledge from Matter

Thank you for answering,

I take Cyproheptadine every day 0,5-3 mg( 3x ~1 mg) since last year.

I've been taking Cabergoline for a few weeks , every week 2 x 0,25 mg

My prolactin is fluctuating up and down, but with Cabergoline it is suppressed.

I will check my ACTH in one month to know if the Cabergoline is working or that I need a dosage increase.

 

[tankasnowgod]

Thank you for answering,

I take Cyproheptadine every day 0,5-3 mg( 3x ~1 mg) since last year.

I've been taking Cabergoline for a few weeks , every week 2 x 0,25 mg

My prolactin is fluctuating up and down, but with Cabergoline it is suppressed.

I will check my ACTH in one month to know if the Cabergoline is working or that I need a dosage increase.

Nice. Do you notice any side effects from the Cabergoline?

 

[Barbarossa]

Nice. Do you notice any side effects from the Cabergoline?

Yes, more fatigue, more breathing problems, and increased agitation, ?!