93 replies to this topic

[niner]

The last three are all abnormal. Cortisol is high. The one who saw me was a NP, not an MD so she didn't know the implication of having a high free cortisol. Should I get an MRI now? :'(

Don't get an MRI. You need to see an endocrinologist, and soon. No NPs or PAs, you need the real deal. This is not the usual runny nose and colds medicine; you have a severe metabolic dysregulation. You need a specialist.

[Luminosity]

Sometimes the answer has been given but we aren't ready to listen to it.

How much more pain do you want to go through?

[niner]

Cortisol, Free, Urinary 73.2 (4.0 - 50.0 mcg/24 hr)
Urinary Creatinine Random 371.2 (20 - 370 mg/dL)
Urinary Total Protein Random 33.7 (1.00 - 11.9 mg/dL)

Fighter, I discussed your case with an endocrinologist, and although he couldn't speak to the Ribose connection, he said that it sounded like Cushing's. An evening cortisol test would be diagnostic toward that. I found a couple papers that might be applicable:

Clin Nephrol. 2007 Feb;67(2):109-13.
Focal segmental glomerulosclerosis in association with Cushing's disease.
Hsieh CK, Hsieh YP, Wen YK, Chen ML.

Division of Nephrology, Department of Medicine, Changhua Christian Hospital, Changhua, Taiwan.

Focal segmental glomerulosclerosis (FSGS) may be idiopathic or secondary to a variety of causes. Clinical distinction between primary and secondary forms of FSGS has crucial therapeutic consequences. Whereas the former may respond to immunosuppressive therapy, treatment of secondary forms of FSGS must aim to resolve the underlying diseases. Although the combination of nephrotic syndrome and Cushing's syndrome has been described anecdotally, the causal relationship between these two diseases remains controversial. We report herein a 37-year-old man who presented with lower extremity pitting edema. Heavy proteinuria and mild renal insufficiency prompted to perform a kidney biopsy and the specimen showed FSGS. On the other hand, admission physical examination was notable for a Cushingoid appearance. After endocrinological investigations, the patient was diagnosed as having Cushing's disease caused by pituitary adrenocorticotropic hormone-producing microadenoma. Immunosuppressive therapy for the treatment of FSGS was not carried out and we treated his Cushing's disease with transsphenoidal resection of the pituitary microadenoma. Surprisingly, resolution of heavy proteinuria occurred when the patient's physical features characteristic of Cushing's disease were gradually resolved 3 months later. This case suggests a possible association of Cushing's disease with FSGS.

PMID: 17338431

I found that paper very interesting because it provides a link between Cushing's and the proteinuria that you've been experiencing. First, a definition from a kidney site:

What does Focal Segmental Glomerulosclerosis mean?
Sclerosis means “Scarring.” There are millions of tiny, microscopic filters in the kidneys called “glomeruli.” They are filters much like a sieve you might find in your kitchen, and they filter the blood, taking out the water-like part that becomes urine and leaving the protein in the blood. If the glomeruli become scarred, then they stop doing a good job filtering the blood and protein starts leaking into the urine instead of staying in the blood. The word “focal” is added because in FSGS, only some of the glomeruli filters become scarred. “Segmental” means that only some sections of the glomerulus becomes scarred, just parts of them. So Focal Segmental Glomerulosclerosis means:
Focal = some
Segmental = sections
Glomerulo = of kidney filters
Sclerosis = are scarred

The good news in the case report above is that fixing the Cushing's fixed the FSGS.

You've also reported migraine symptoms when you take certain supplements. I saw a paper that talked about a link between Cushing's and Intracranial Hypertension, which means that the fluid pressure in the head is elevated. I might be barking up the wrong tree here, since it seems to develop as a result of corticoid insufficiency, rather than excess, which is what you have. Since there's a connection between IIH and pituitary dysfunction, it's at least worth my asking: When you have those migraines, do you notice a pulsing sound in your ears? This is known as pulsatile tinnitus, and might be a ringing or whooshing sound. That would be suggestive of IIH.

The bottom line is that it would be worthwhile to treat this as a case of Cushing's for the time being. I'll reverse my earlier comment about the MRI; you may ultimately need some imaging to sort out the cause of the elevated cortisol, however it should be done under the guidance of an endocrinologist. You should be eating a higher-than normal amount of protein to replace what you're losing, and should be on guard against the development of osteoporosis. You may want to take supplemental calcium and vitamin D, which could help a little on the osteoporosis front. If you're able, some light exercise would help to suppress muscle wasting.

[fighter]

Hi, niner, I finally got back to my previous HMO, and am now scheduled to see an endo, although I'm asking for a sooner date, the earliest I got is June 5th. I feel like I'm down to my last layer of muscle before something really bad happens. :(

I asked the internist what I could take in the mean time to stop the muscle wasting, she just kept saying that's why you need a specialist.

I've been searching, seems like Grape Seed Extract "downregulates glucocorticoid receptors", does that imply that it would bring down glucocorticoid hormones consequently?

It definitely feels like I am in some sort of hypermetabolic / catabolic state. I read that Magnesium contributes to gluconeogenesis, that's pretty bad right? http://www.mgwater.com/gafibro.shtml I'm trying to avoid gluconeogenesis, yet I need Mg to stop the muscle pains. Is there something out there that could inhibit gluconeogenesis?>

Edited by fighter, 16 May 2012 - 07:46 AM.

[niner]

Hi fighter, I'm very glad to hear that you got back into the HMO. I don't know that gluconeogenesis is the problem; you're losing protein in your urine, so that's not being converted to sugar. I still think that the Cushing's related FSGS that I mentioned in the previous post is a plausible explanation for the proteinuria. Eating more protein (supplemental whey would be great) and doing whatever exercise you're able to do are probably the best things you can do for the time being. Don't stop the magnesium. If it's helping with the muscle pain, you are probably deficient in it.

[fighter]

Thank you, niner for people like you guys. There is still hope in humanity.

I have just finished the 3-day dexamethesone test to check for Cushing. Waiting for the blood test result to come back.
Some other lab work that came out abnormal:

Low density lipoprotein direct 130 (<129 mg/dL) probably due to high cortisol?
ALT 61 (< 36 U/L)
VITAMIN D, 25-HYDROXY 10 (25 - 79 ng/mL) -> I was Rx'd with a 50,000 Vit. D2 / wk is that fine guys based on what you know? d2 not d3?
Protein, Urinalysis, Random not 24h: 20 (0 - 9 mg/dL)

Some other notable info:

• Distinct strong odor at the back of my throat similar to someone doing Atkin's or Low-Carb or Paleo diet.
• Was Rx'd with a low dose anastrozole/arimidex 0.25mg every other day for 2 mos in attempt to stop gynecomastia. I first noticed the increased muscle wasting after taking this. Any input surrounding this would be really helpful

thank you so much for anyone who took time to read. Muscle wasting still happening, very painful dented palms, feet, shoulder blades. Very painful throat, wasting tongue, eyesight now affected

Edited by fighter, 21 May 2012 - 03:33 AM.

[Lufega]

What are your DHEA and testosterone levels like ? In the meanwhile, you could try to control the cortisol levels with something like Relora. On the other hand, if muscle wasting continues to be a problem, I would be looking at anabolic/ergogenic substances. I'm sure your Doctor will see it as medically necessary.

Edited by Lufega, 21 May 2012 - 05:00 AM.

[fighter]

Can you guys kindly briefly take a look at this, about Grape Seed Extract blocking glucocorticoid receptors. Does that imply that cortisol would be blocked?

The GSE treatment also led to the down-regulation of two transcription factors, cyclic AMP-responsive element binding protein-1 (CREB-1) and glucocorticoid receptor (GR). CREB-1 and GR are known to up-regulate aromatase gene expression through promoters I.3/II and I.4, respectively. We believe that these results are exciting in that they show GSE to be potentially useful in the prevention/treatment of hormone-dependent breast cancer through the inhibition of aromatase activity as well as its expression. (Cancer Res 2006; 66(11): 5960-7)

http://www.ergo-log....omatasegse.html
http://cancerres.aac...1/5960.abstract

[fighter]

Hi, everyone, quick update, so last week I forced my endocrinologist to check for my testosterone and estradiol, and low and behold my total testosterone is abnormally low. :( She doesn't seem interested in truly knowing why I am losing muscle mass she asked why I want to have my hormones checked. Is it not true that cortisol is strongly linked to your testosterone levels?

TESTOSTERONE, ULTRASENSITIVE, LC MS/MS 227 (250 - 1100ng/dL)
Testosterone free 42.5 (35.0 - 155.0 pg/mL)

I'm scared of doing the T prescription if that will be the case. Are there any recommendations you guys have to increase my T without doing the T replacement? I'm scared of the side effects :(

[nowayout]

I'm scared of doing the T prescription if that will be the case. Are there any recommendations you guys have to increase my T without doing the T replacement? I'm scared of the side effects :(

Side effects usually occur when people take supraphysiological doses of testosterone (for example, bodybuilders sometimes take 10 or 20 times as much testosterone as your body would make, so of course they get problems). Sides are unlikely with the physiological doses a doctor would prescribe, and if they occur are almost always easily reversible by a reduction of the dose.

It would be good to get to the bottom of the cause of this, though. Some of your symptoms go a bit beyond what one would expect from just low testosterone as far as I know. You mentioned that you had a negative blood test for RA (which can cause low testosterone). You should probably have a workup through a rheumatologist anyway - there are a whole bunch of other autoimmune diseases that are not ruled out by this test, or for which blood tests don't even exist, and can also cause derangement of sex hormones as a secondary effect. Even the rheumatoid factor test that you probably had is not even definitive for ruling out RA.

Good luck! It took me 3 years and many doctors and many false tracks before I was diagnosed with spondyloarthropathy (one of those rheumatic diseases that do not have a blood test). You have to be persistent sometimes.

Edited by viveutvivas, 11 June 2012 - 01:32 AM.

[nowayout]

I would stop taking the curcumin, by the way. It is estrogenic (see the Sloan-Kettering writeup here: http://www.mskcc.org...e/herb/turmeric) and you already have gynecomastia and low testosterone.

The rashes and peripheral pains also sound like something autoimmune. (Psoriatic arthritis? Lupus?) Get thee to a rheumatologist toute suite. In my experience, general practitioners/internists do not know how to diagnose these kinds of conditions, and people can go undiagnosed for years because of this.

Edited by viveutvivas, 11 June 2012 - 01:42 AM.

[Hip]

Cachexia might be worth considering.

[fighter]

Hello everyone. I had an EMG test done, result was normal. However, I recently found out a member of HealthBoards that has the very same symptoms as mine: tachycardia, full body burning pain, full body muscle wasting, muscle pain, bitter taste in the mouth.

She was diagnosed with CFIDS, RSD and Dysautonomia. Now it makes sense. Can anyone recommend a supplement treatment for Reflex Sympathetic Dystrophy? Other than Gabapentin? Please :'-(

[niner]

Hello everyone. I had an EMG test done, result was normal. However, I recently found out a member of HealthBoards that has the very same symptoms as mine: tachycardia, full body burning pain, full body muscle wasting, muscle pain, bitter taste in the mouth.

She was diagnosed with CFIDS, RSD and Dysautonomia. Now it makes sense. Can anyone recommend a supplement treatment for Reflex Sympathetic Dystrophy? Other than Gabapentin? Please :'-(

Hey fighter, how are you feeling? Any change in your condition? Are you thinking that you have CFIDS and Dysautonomia as well? They're somewhat related. Both CFidS and RSD can have oxidative damage as a component, so it might be worth trying C60-olive oil. This is a new thing that you may not be aware of, but it's important enough that we've devoted an entire forum to it. It's cheap to try- you can get it here. I'm taking 2 ml/day, which is the dose I'd recommend.

[fighter]

Hello everyone. I had an EMG test done, result was normal. However, I recently found out a member of HealthBoards that has the very same symptoms as mine: tachycardia, full body burning pain, full body muscle wasting, muscle pain, bitter taste in the mouth.

She was diagnosed with CFIDS, RSD and Dysautonomia. Now it makes sense. Can anyone recommend a supplement treatment for Reflex Sympathetic Dystrophy? Other than Gabapentin? Please :'-(

Hey fighter, how are you feeling? Any change in your condition? Are you thinking that you have CFIDS and Dysautonomia as well? They're somewhat related. Both CFidS and RSD can have oxidative damage as a component, so it might be worth trying C60-olive oil. This is a new thing that you may not be aware of, but it's important enough that we've devoted an entire forum to it. It's cheap to try- you can get it here. I'm taking 2 ml/day, which is the dose I'd recommend.

Thank you, Mr. niner for your unwavering support and concern. The symptoms have only worsened from last time. I am still losing muscle mass every single day and my neck circumference has lost another quarter inch, the parts inside my mouth are wasted.

It's disappointing that my primary doctor at Kaiser does not know what RSD and CFIDS are. I just got off the phone with her and I was right in making it a phone appt rather than in-person as I would simply waste my time yet again.

I say RSD and CFIDS because in another patients forum I ran across a member who share exactly the SAME rare symptoms I have, the

• bitter/unusual taste in mouth
• full body muscle wasting
• burning pain in the affected muscles
• migraine
• tachy
• The recent 24 hour urine protein test was normal but it's still foamy

I will try this c60-olive oil. What action mechanism does it have exactly? And how is it different/better than GSE? Currently I decided to take

B6 (P5P/AKG)
GSE
Vitamin K2, D3
Relora, Rhodiola
Magnesium, CoQ10
Vit C, Vit. A / Astaxanthin
atenolol beta blocker
then ordered Benfotiamine

Will this olive oil regenerate the lost muscles in the unusual areas at all? How about Stem cell? Do you think I can regenerate my lost muscle tissue via stem cell treatment?

Edited by fighter, 05 October 2012 - 08:49 PM.

[1kgcoffee]

Although interesting, I wouldn't expect results from c60 for your condition.

Have you ruled out HIV?

Are you absolutely sure that this is not diabetes, specifically type 1? On second reading, it sounds like your body is not producing enough insulin or you have major insulin resistance. I have a hard time understanding how a doctor could miss something so common, but you should triple check. This would explain the high cortisol, fatty liver, hypertension and muscle wasting.

Taking BCAAs (branched chain amino acids) and maybe DHEA migh help to slow the muscle loss a little.

Which muscles do you feel a burning pain in?

[fighter]

No HIV.

normal fasting glucose. What test is ordered for type 1?

burning pain in the throat, tongue, under the tongue, eyes, palms, feet and more recently stomach

[1kgcoffee]

http://en.wikipedia....ype_1#Diagnosis
what I think you might have-> http://en.wikipedia....immune_diabetes
Get fasting glucose tested again. Along with antibodies tests and hba1c. Low vitamin D status can trigger autoimmune diseases like this.

Pain in palms and feet could indicate neuropathy. Any discoloration?

Edited by 1kgcoffee, 06 October 2012 - 12:26 AM.

[fighter]

How is the hba1c any different/better than the fasting glucose? I get tested for fasting glucose every month. It's averaging 70-75 mg/dL.

THere is no discoloration in the burning areas but opposite them have pigmented parts where muscle mass used to be, and sometimes the affected areas are flaking away

[fighter]

Also there's frequent rashing in the forearms but comes and goes every other day. THere's also plaque type of psoriasis on the neck and the other side of the elbows occasionally

[Sillewater]

Hey fighter, I would like to get a clearer picture of your symptoms. Could you right out each symptom with the starting date and the speed of progression?
I was also wondering if you had some pictures of yourself (you can blot out your face). If you feel uncomfortable answering these questions I understand.

Could you also fill in your meds/supplements, also with the starting times.

Questions:
Have you ever been tested for heavy metals? Could you describe your job and living environment?
Any relevant family history?
Ever get a uric acid test?
Were you ever sick before these major symptoms?
Ever get a full hormonal panel?

Ever get a ESR?

Maybe I missed it, but did they determine the type of protein in the urine, did they measure 24hr albumin?

What is your diet like?

What happens when you stop taking all your supplements?

26 yr M
5'10
205 lbs
1 month gained 50lbs
Pictures?

Sx
Rapid muscle wasting (How rapid? Pictures?)
Rapidly growing belly (U/S shows fat)

Si
Hypertension (values?)
Heart Rate (values?)

Labs
24hr urine protein 192 mg/dl (RR 0 to 0.15 gm/24 hr)
Creatinine 0.81 L
Thyroid is normal.
Catecholamines normal.
ANA normal.
No diabetes
eGFR, BUN, Normal

Urine 24 hour volume
1300mL

Ur Creat(Cort) 2.15 (0.6 - 2.5 g/24 hr) N

Cortisol, Free, Urinary 73.2 (4.0 - 50.0 mcg/24 hr)
Urinary Creatinine Random 371.2 (20 - 370 mg/dL)
Urinary Total Protein Random 33.7 (1.00 - 11.9 mg/dL)

Low density lipoprotein direct 130 (<129 mg/dL) probably due to high cortisol?
ALT 61 (< 36 U/L)
VITAMIN D, 25-HYDROXY 10 (25 - 79 ng/mL)
Protein, Urinalysis, Random not 24h: 20 (0 - 9 mg/dL)

Investigations
Kidney US normal
Liver US “fatty liver”
Abdominal CT contrast normal

Meds/Supplements
B6 (P5P/AKG)
GSE
Vitamin K2, D3
Relora, Rhodiola
Magnesium, CoQ10
Vit C, Vit. A / Astaxanthin
atenolol beta blocker
then ordered Benfotiamine

[Sillewater]

Separate post for clarity:

Your creatinine levels are low and the moderately elevated ALT makes me think liver problems (maybe the infiltrate in the liver isn't fat?). The Creat(Cort) level would make me stray away from Cushing's and the fact that your creatinine levels are low makes me stray even farther (a proper work-up by an endocrinologist would clear that up).

You say you have muscle wasting and combined with the proteinuria makes me think kidney, however the protein loss isn't that much. Have you ever gotten your copper levels tested? Look up Wilson's disease, do you have those symptoms?

[fighter]

2005 - intense pain in the jaw, not lockjaw, just the joint of the jaw there is excruciating pain
01/2006 - developed some type of scaling around my neck and around my eyes and eyebrows and contracted pink eye, started losing hair in my entire body diffusely
mid 2006 - intense drilling shooting pains in my left trapezius, which still lingers to this day only milder and has moved to the Rt trap as well and the upper right elbow joint

2007 physical - Dr suspected I was taking drugs after a high BP + tachycardia test. Never took drugs ever.

around 2007-08 I started taking liquid chlorophyll, didn't know it had copper in it. I had ceruloplasmin test months after, it read normal.

2010 - started taking Carnitine + ribose. Everytime I took carnitine my lower back would be in pain, a poking sensation like it's being pricked inside. ALso I would have this bitter/unusual taste in my mouth. One day of taking ribose, i had a very bad reaction in my tummy. Didn't eat breakfast that particular time. Thought it was hypoglycemia.

From that day onwards, I've had this foamy appearance in my urine. update: 09/2012 24hr proteinuria test is normal, ALT enzyme went down a little bit

mid 2011 Muscle wasting all over body first noticed

Oct 2011 - Rx'd 0.25mg Anastrozole every other day after doctor suspected gynecomastia. I discontinued after about 30 pills of the 0.25mg

02/2012 onwards
Muscle wasting worsened. Noticed that I felt my bones upon resting my elbows on the table. Tongue felt like it always burnt. Neck circumference shrunk. Thighs now shrunk, legs shrunk. Facial muscles wasted. Burning pain on palms throat, feet, tongue, soft palate wasted away severely

09/2012
EMG test normal
Neuro physical test normal
ALT went down a bit
Latest proteinuria normal

creatinine serum 0.83 (aug 2012)

[fighter]

I didn;'t realize my doctor checked Ceruloplasmin levels last May:


Standard range 16-50 mg/dL 1/6/2009 23 5/20/2012 19

ALT enzyme Levels:
Name ALT Standard range < 36 U/L 12/19/2008 42 1/6/2009 36 3/7/2011 63 5/15/2012 61 8/2/2012 48 9/17/2012 59

One anecdotal observation, the high ALT values were collected PM, the low ones collected early AM

[Sillewater]

Did you use to bodybuild? Just curious because you mention neck circumference.

Family history?

Maybe stop taking all your supplements for 2 weeks to see what happens?

Mitochondrial disease is jumping into mind, but a very tentative diagnoses. I would go to the endocrinologist first and let him/her thoroughly examine you and refer as necessary.

[xEva]

Hello everyone. I had an EMG test done, result was normal. However, I recently found out a member of HealthBoards that has the very same symptoms as mine: tachycardia, full body burning pain, full body muscle wasting, muscle pain, bitter taste in the mouth.

She was diagnosed with CFIDS, RSD and Dysautonomia. Now it makes sense. Please :'-(

IMO this has to do with the dysfunction of Primo-vascular system (a.k.a. Bonghan circulatory system).

http://www.ncbi.nlm....pubmed/20633480
Bonghan circulatory system as an extension of acupuncture meridians.

The Bonghan system is a newly-discovered circulatory system, which corresponds to classical acupuncture meridians ... Only recently have most of its significant parts, such as the Bonghan system (BHS) inside blood or lymph vessels, on the surfaces of internal organs, and in brain ventricles, been confirmed. ...

So, I would also try an acupuncturist.

And by the way, that's a fascinating discovery. There is enough info already if you google. Especially important for those who think that we know just about everything about the physiology and only lack detailed knowledge of genetics and metabolic pathways. Here is a whole circulatory system which apparently plays the central role in physiology.

[Sillewater]

One more question. Ever get a TSH test?

[fighter]

Hello again. Thank you all for the insightful response. They really mean a lot. So I am back to square one. The most frightening is having no diagnosis as your symptoms progressively worsen.

*** Not ALS, not MS, not Cushing, not Thyroid disease, normal multiple glucose tests. MRI, NCV, EMG, Physical ALS test all normal. Symptoms keep going.

Current symptoms: muscle wasting - ear canal has loosened/widened, insides of the mouth keeps on wasting away, other muscle parts keep wasting away; nailbeds very painful due to wasting, palms wasting and burning, throat burning, muscle twitching everywhere, tachycardia, nasal cartilage thinned out, biceps, arms, legs, thighs, neck shrunk. dark ring pigment on the neck, glutes shrunk, ALT enzymes have gone down to 44 (normal <39), lost 7 lbs (I am 99% positive it's muscle mass lost as my waistline have remained the same), stomach pains (feels like atrophy on the inside, unusual crystal-like shattering sound in the tummy).

1. If this is not ALS then I am left considering Lyme Disease, D-Ribose Toxicity (??), and Anxiety. Ribose overdose may cause hypoglycemia. Can hypoglycemia result to muscle atrophy and foamy urine to begin with?

2. I was reading up on Lithium when I came across a study linking it to brain atrophy, so it made me think, could D-Ribose taken on empty stomach in a relatively large amount result to muscle atrophy?

3. If this is Anxiety, which form of lithium is the best?


Thank you for your generous time.

@ Sillewater: TSH normal

Edited by fighter, 02 November 2012 - 10:31 PM.

[niner]

Fighter, your symptoms certainly sound like they go beyond anxiety, and there was that report of another person with similar Ribose+hypoglycemia induced symptoms. What do your doctors say about the muscle wasting? Is that what they think is going on, or are they brushing those symptoms off as anxiety?

[fighter]

Fighter, your symptoms certainly sound like they go beyond anxiety, and there was that report of another person with similar Ribose+hypoglycemia induced symptoms. What do your doctors say about the muscle wasting? Is that what they think is going on, or are they brushing those symptoms off as anxiety?

Yes they dismiss it as anxiety which is quite insulting and frustrating. I get a rapid heart rate everyday and when I link it with muscle wasting, these are the conditions that came up: http://symptoms.righ...t-beat-desc.htm The Rheumatologist said he does not think it's dermatomyositis and not ALS since I have no weakness, just losing muscle mass. The simple brushing of my teeth in the morning is already a struggle, my hands cramp immediately. I can't cook my food straight without resting my hands anymore because they would hurt too soon. So I don't know if anxiety is this powerful to cause much wasting.

Do you think taking Lithium would be worth a try? I ask because I read conflicting studies, some saying it may alleviate muscle atrophy, some link it to atrophy. Or is it only bad in high doses?

One last thing, every time I take Magnesium, Vit C or anything with Calcium Carbonate, I would get really bad acute headaches. This wasn't the case before the ribose incident. D-Ribose and Magnesium are related to ATP/ Krebs cycle. Do you think this may have something to do with OD-ing on Ribose? If I take Vit D, I would not get the headache (is it because D is a steroid?). I have carefully isolated all the pills I take and it's always only those 3, before it was even Taurine giving me headaches but not anymore. I thought Magnesium is good for headaches to begin with. Did I mess up my nervous system or something

Edited by fighter, 03 November 2012 - 04:31 AM.