Please Help, Severe Muscle Wasting

[Bart1]

Dear members,

I’ve been roaming this forum since 2018, since I discovered the work of Peat after experiencing a health crisis extreme tiredness, dizziness(hypothyroid; low temps and low pulse).

Since then I tried a lot of things to get things better snd had a lot of testing done.

Unfortunately, things got worse, way worse.

I’m in a state of muscle wasting. This is going on for about 1,5 years. Since a year walking became more difficult. As the wasting continued, skeletal muscles became softer I started to have muscle weakness etc. I panicked and went to a neurologist, who did a brain and spine mri checking for things like MS. nothing out of the ordinary. Also went to a endocrinologist who found low testosterone and slightly elevated CK levels.
But after a second blood draw, no elevated CK anymore and testosterone was low but in range.

I have a lot of additional information I can provide but I hope someknowledgeably people could provide some suggestions about how to move forward.

i’m 38 years old. I have hemochromatosis discovered about 15 years ago. I have chronically high serum iron and saturation. I have been donating blood to keep ferritin low. But since I understand more of the disease, I try to donate now 5 times a year.

I am pre diabetic, not really overweight. I have a buffalo hump and my neck is tilting forward more snd more.

if I consume a lot of sugar, I immediately feel more muscle weakness.

I’m hypothyroid as well. I take thyroid but have difficulty raising metabolism because I keep running into a stress response and the wasting starts again.

A lot of pro metabolic things excagerate the situation. Simply adding more sugar to meals and b vitamins does not really work.

At this point I am almost not able to walk. My skeletal muscles have atrophied so much. I’m desperate at this point.

some things I think could be the cause

hemochromatosis->hypothyroidism->insulin resistance.

some things I found:
Hypothyroid myopathy typically manifests as polymyositis-like myopathy with proximal muscle weakness and an increased creatine kinase level.

Hyperglycemia induces skeletal muscle atrophy via a WWP1/KLF15 axis.
Hyperglycemia induces skeletal muscle atrophy via a WWP1/KLF15 axis. - PubMed - NCBI


Structural and functional modifications occur in skeletal muscle during aging. These defects lead to impairment in muscle strength, contractile capacity and performance. ... Therefore in a more general concept, insulin resistance found in many clinical settings, could be considered as a contributor to muscle wasting.




Insulin resistance accelerates muscle protein degradation: Activation of the ubiquitin-proteasome pathway by defects in muscle cell signaling. - PubMed - NCBI
Thus, insulin resistance causes muscle wasting by mechanisms that involve suppression of PI3K/Akt signaling leading to activation of caspase-3 and the ubiquitin-proteasome proteolytic pathway causing muscle protein degradation.


Any help suggestion highly appreciated; I’m desperate, I live in hell atm

 

[Kunstruct]

testosterone was low but in range.

Since this is so subjective, various people consider various levels low or ok others don't, would be able to share this number?
I am also curious if all the rest of the steroid hormones were tested or only testosterone? DHEA-S, E2, DHT, Cortisol?
Maybe some pituitary hormones others than TSH, like LH and FSH, ACTH, Prolactin?

 

[Sulcuscentralis]

Do you digest food properly? Do you have reactions to histamine containing foods (fermented foods, dairy)?

 

[S-VV]

Muscle wasting, aka cachexia, is a medical emergency. There is usually an underlying disease. Nonetheless, there are non-specific treatments that may help:

Cachexia - Wikipedia

Ciproheptadine is an appetite stimulant.

Have you tried anabolic steroids? They are easily available if you know where to look.

 

[Bart1]

Since this is so subjective, various people consider various levels low or ok others don't, would be able to share this number?
I am also curious if all the rest of the steroid hormones were tested or only testosterone? DHEA-S, E2, DHT, Cortisol?
Maybe some pituitary hormones others than TSH, like LH and FSH, ACTH, Prolactin?

Yes of course I have done 1 before this all started in 2018(pdf) and summer 2019

 

[Bart1]

Do you digest food properly? Do you have reactions to histamine containing foods (fermented foods, dairy)?

I think I digest milk okish , I have done a lactose intolerance test which was negative. I do think I digest things poorly and I have bloating and gut disbiosis

 

[Sulcuscentralis]

Cachexia for seemingly no reason can be a sign of cancer. Any family history of cancer? Abdominal or whole body MRI or Pet. scan can be helpful in excluding that. Although a pet scan will be a large x-ray load.

 

[Bart1]

Muscle wasting, aka cachexia, is a medical emergency. There is usually an underlying disease. Nonetheless, there are non-specific treatments that may help:

Cachexia - Wikipedia

Ciproheptadine is an appetite stimulant.

Have you tried anabolic steroids? They are easily available if you know where to look.

I have tried to bring the severity under the attention of doctors; for instance I asked for a 24 hours cortisol test, for (pseudo) cushings, but they did not want to do that since they said I did not fit the bill

 

[Bart1]

Cachexia for seemingly no reason can be a sign of cancer. Any family history of cancer? Abdominal or whole body MRI or Pet. scan can be helpful in excluding that. Although a pet scan will be a large x-ray load.

Cachexia for seemingly no reason can be a sign of cancer. Any family history of cancer? Abdominal or whole body MRI or Pet. scan can be helpful in excluding that. Although a pet scan will be a large x-ray load.

I have had brain, spine mri, a lot of blood drawn, just recently had a echo of my gut which did not reveal anything.

 

[Sulcuscentralis]

I think I digest milk okish , I have done a lactose intolerance test which was negative. I do think I digest things poorly and I have bloating and gut disbiosis

I had gut disbiosis a few years back and lost 25 pounds in a few month and I was lean back then. I as eating 5 times day and was losing weight. Looking at the symptoms it was SIBO probably. Still havent recovered 100 % from it. Lactulose or hydrogen breath test can be useful in diagnosing it. GI docs do it usually. If you have SIBo you will have secondary histamine intolerance, dizziness and brain fog is one of the symptoms. What is your blood pressure? Too much histamine will also make you hypothyroid, but it's not gonna show up on TSH, and t3/t4 blood tests.

 

[Bart1]

I had gut disbiosis a few years back and lost 25 pounds in a few month and I was lean back then. I as eating 5 times day and was losing weight. Looking at the symptoms it was SIBO probably. Still havent recovered 100 % from it. Lactulose or hydrogen breath test can be useful in diagnosing it. GI docs do it usually. If you have SIBo you will have secondary histamine intolerance, dizziness and brain fog is one of the symptoms. What is your blood pressure? Too much histamine will also make you hypothyroid, but it's not gonna show up on TSH, and t3/t4 blood tests.

The lactose test I did was a breath test and it revealed no abnormalities. I do have bloating and burping and soft stools

 

[GreekDemiGod]

Start lifting, ffs.
And eat 200g of protein / day.

 

[S-VV]

Normal electrolyte balance
Normal kidney function
Normal liver function
Normal thyroid function

but...

High SHBG
Low free T
Low FSH & LH
High CK
Low CRP

I think the most worrisome is the high CK, especially in the context of cachexia.

Have you done an ElectroMyoGram (EMG)?
Do you have Peripheral neuropathy?
Was the symptom onset sudden or gradual? When did it begin?

 

[S-VV]

Start lifting, ffs.
And eat 200g of protein / day.

Ignore.

No one with idiopathic hyper-CK should lift until the cause is established, or you could precipitate a myopathic crisis.

 

[Kunstruct]

As far as I can see the endocrinologist could say that your testosterone is not in range if he/she wanted to or to find the cause of this issue especially since the patient does not feel well, since that is important more than what some lab value someone wants to follow blindly.

You Total Testosterone is 274ng/dl, which is very low, it does not matter it is in range, under 300ng/dl most labs consider in under range, other consider it under range at min 250ng/dl.
But still you could go in one day and easily be tested in your worst day at 240ng/dl, depending on what you ate and how much physical and and emotional stress you had.
So what then, at that point would would have been prescribed something?


And your Free Testoterone is under minim even in their own values. 230 pmol/L is their minimum and you had 170pmol/L
Here the endo could have said there is some problem even by their own standards.
LH seems very low, not that you want it to be very high.

You labs lowest acceptable testosterone value seem probably the lowest I have seen, 200ng/dl
I wonder if you go to another cabinet you are not viewed differently because if they want you to be 150ng/dl testosterone to think this is really bad I believe that is too much.

At least the doctors should be worried.

 

[Kunstruct]

Normal electrolyte balance
Normal kidney function
Normal liver function
Normal thyroid function

but...

High SHBG
Low free T
Low FSH & LH
High CK
Low CRP

I think the most worrisome is the high CK, especially in the context of cachexia.

Have you done an ElectroMyoGram (EMG)?
Do you have Peripheral neuropathy?
Was the symptom onset sudden or gradual? When did it begin?

Very low free testosterone (170pmol/l), very low total testosterone (274ng/dl)

 

[Bart1]

Normal electrolyte balance
Normal kidney function
Normal liver function
Normal thyroid function

but...

High SHBG
Low free T
Low FSH & LH
High CK
Low CRP

I think the most worrisome is the high CK, especially in the context of cachexia.

Have you done an ElectroMyoGram (EMG)?
Do you have Peripheral neuropathy?
Was the symptom onset sudden or gradual? When did it begin?

It began about 1,5 years ago. I was trying thyroid and pregnenalon and suddenly a lot of muscle wasting started, within a weak I list almost 20 pounds. After that within 2 weeks I gained 40 pounds. Looks like a lot of water weight and fat. Since then gradually over 1 to 1,5 years been wasting away. I must say it’s especially skeletal muscle. I developed a buffalo hump so that’s what was causing me to think it might be high cortisol by all the pro metabolic things.

btw the CK level was elevated once, not on subsequent tests or tests with other doctors.

 

[Bart1]

Very low free testosterone (170pmol/l), very low total testosterone (274ng/dl)

Agree, they did another test 2 weeks after and then everything was in range and they said it’s not serious enough to do something about it and might be high stress related..

 

[Bart1]

I did a blood test myself recently on vitamjn D and cholesterol. Vitamin D was then low and cholesterol 7 , so very high

 

[S-VV]

Agree, they did another test 2 weeks after and then everything was in range and they said it’s not serious enough to do something about it and might be high stress related..

Do you know why? Because the meme creams prescribed for hypogonadism (Androgel) will barely raise your test to 400, maybe 500 if your lucky. That’s it. So yeah, the dr doesn’t think it’s worth it to risk iatrogenic testicular atrophy in exchange for slightly higher T levels.

 

[Bart1]

Do you know why? Because the meme creams prescribed for hypogonadism (Androgel) will barely raise your test to 400, maybe 500 if your lucky. That’s it. So yeah, the dr doesn’t think it’s worth it to risk iatrogenic testicular atrophy in exchange for slightly higher T levels.

Yes, this was a very highly regarded hospital. They just send you home..