Substance P - Mysterious Case

Pharma TRT
1

I have finally compiled the timeline from my case and everything has been going on in the last few years into one thread. Sorry its so much info!

2005 Joint pain begins lifting injuries accumulate in tendons and do not go away.
2005-2009 Three knee surgeries and more injuries take me out of lifting
2009 Crash dieting and losing 65 lbs cause test levels to crash and not return.

02/23/2010

Height : 6’0
Weight : 190
Body Fat %: - 8%
Age : 21
Gyno - Never
Hair - Never really hairy, some facial hair but no major chest or back hair
Hair Loss - Never
Testes - Normal size maybe slightly larger than normal - Hang Low - never ache
Brain Fog - Sometimes
Short tempered - Yes
Intolerant - Yes
Sensitive to loud noise - partially
Get Cold easily - Yes
No Past AAS use or Prohormone use - closest thing would be tribulus and ZMA
Drug Use - caffeine 400 + mg per day Nicotine from swedish snus - 48 mg per day - Minor anti inflammatory use (naproxen). Some pain killer use post knee surgery. No long term drug use
Diet - Low carb very rich in omega 3’s DHEA , fish oil. Only lean meats nuts, fruits, and vegetables
Major Areas of Fat storage - Umbilical region, thighs, lovehandles

Lab Numbers
FSH - 1.7 ^2 mIU / ml Range 1.6 -9.7 mIU/ ml
LH - 0^3 mIU/ ml Range - <15 mIU / ml
Prolactin - 5 ng/ml Range - 0 -20 ng/ml
CRP - .8^1 ng/ ml Range - Range for inflammation 0.0 - 7.4
Total Test - 130 ng / dl Range - 241-827
Free Test - .55L ng / dl Range - .95-4.30
Free Test Percentage - .21 L ^2 Range .32-.51
Free T4 - 1.06 ng / dl Range - .65 - 1.40
TSH - 2.14 mIU / l - Range - .46 - 4.68
Glucose Serum 95 mg / dl Range - 74-106
Creatinine - 1.07 mg / dl Range .66 - 1.25
Bun / Creatinine ratio 21.50H Range 12.00 - 20.00
Bun 23 range mg / dl - Range 12-20.00

After this I was put on 100mg Test Cyp and also took 250 iu HcG EOD plus 1.0 mg adex weekly. I stayed on this protocol for four months and after feeling no difference decided to attempt a restart. I ran nolvadex at 60 mg for two weeks than 40 mgs for two weeks than 20mg for 2 weeks. I finished with 10mgs for 2 weeks and called it good. I never really started feeling any better after that and was still getting erection fine after I came off (just no morning wood). I never had labs to confirm or deny any of this I was going purely on feeling.
Last December I was reading the ultramind solution and decided since I felt like garbage I may try ti implement a few of the supplement recommendations. I started taking 10,000 iu Vit d3 and some b12. Within two or three weeks I started getting morning wood again!

I then was blessed with the opportunity to see Hans and Dr. O (special thanks to you know who!). I flew out to philly and got a full panel of labs.

02/18/2011
Testosterone - 763 - Range (132 -813)
Testosterone Free - 17.0 - Range (9.3-26.5)
Estradiol enhanced serum - 38 Range - ( 10-40)
Thyroxine Binding Globulin - 12 - range (12-26)
Iondine Random U - 109 - Range (26-705)
Dhea Sulfate - 280 - Range (280-640)
Ceruloplasmin - 19 - Range (20-60)
Bun - 26 - Range (9-20) High again
Bun/Creatinine ratio - 23.01 Range (12 - 20)
Total Bilirubin - 1.6 Range (.2-1.3)
MCV - 95.4 - Range -( 84-94)
Monocytes - 10.0 (4.0-9.0)
TSH -2.11 Range (.46-4.68)
SHBG 32.2 Range - (10-57)
Prolactin 15 Range - (0-20)
Free t3 4.28 Range (2.77 -5.27)
T3 Total - 1.27 Range (…97 - 1.69)
Free T4 - 1.11 Range ( .65-1.40)
Total T4 - 6.2 Range -(4.3 - 11.0)
LH - 2 Range ( 0-14)
Progesterone 2.86 - Range (.21 -1.54)
Cortisol AM - 19.7 Range (5-24)
IGF-1 - 317 - Range (116-358)
ACTH - 22 Range <46
Pregnenelone â?? Very high ( do not have numbers present but 3 times the range)

So it appears as tho my HPTA has been restored! Test numbers are good and morning erections are back (Vit d and b12? ). However I still have chronic joint and tendon pain and am still dealing with some depression. Those are main problems that need to be addressed.

KSMAN has presented the following words of wisdom
Things that jump out:
-review iodine intake from salt and vitamins
-thyroid hormones look decent, but TSH is up. From low iodine?
-take DHEA
-prolactin is about 2x what we see here for most guys, but the range is wider too, is HPTA repressive
-progesterone may be helping cortisol, a few drugs can elevate, is HPTA repressive
-active cortisol function may be ‘stealing’ pregnenolone, reducing pregnenolone–>DHEA
-possible reduced T production, rate limited by DHEA
-E2 is high, reducing LH, FSH, and T
-E2 probably high because of reduced E2 clearance in the liver or effect of drugs
-SHBG is consistent with E2
-SHBG contributing to low FT
-FT is highly variable and you can’t do much with any lab number
-LH is highly variable, leading to the above
-FSH is more valuable than LH as it has a long half life, a proxy for LH

You will be way better off with lower E2. You should seek to find and fix causes, however, there is a role for an AI here.

Hans and Dr. O presented the following words of wisdom :

  • Narrowed It down to either a copper (toxicity/deficiency problem) or Congenital Adrenal Hyperplasia
  • Suggested that I seek out an Endo for further Testing
  • No Rx required at this current time.

So there you have it. Still a medical mystery but special thanks to Mr. LowT, Hans and Dr. O, and KSMAN. You guys have been awesome. My experience with Hans went very well and he is very good at quickly communicating and responding when needed. As you all may know I have very limited resources and do not really know where to go from here. I will try to seek out a good doc that can look at this and also accept my insurance.

Any suggestions are more than welcome.

2

What daily amounts of copper and zinc in your supplements.

3

I started taking zinc for about two weeks after those labs. Once i got them back i stopped immediately. So not really enough time to do anything. The rest of my supplements are clean of copper and zinc.

4

[quote]Substance P wrote:
I started taking zinc for about two weeks after those labs. Once i got them back i stopped immediately. So not really enough time to do anything. The rest of my supplements are clean of copper and zinc. [/quote]

As mentioned in clincal studies show you have 2 of the qualifcations for CAH which seems to fit your blood profile. We are still waiting for other testing results. Again this need to be further examined by an endo to rule it out. I will be preparing the letter for your endo this friday so we can get that under way.

Screwing around with e2 at this time would not be a good idea because since you are getting your morning erections back then we do not want to upset the cart until other areas need to be further investigated which have already been noted. Tinker with too many variables can cause invalid reading and can alter therapy out come when determined.

Dhea is last thing that needs to be dealt with right now, Not so much is really known about it. If worst comes to worse we would go with TD dhea as it will not affect estrogen like oral dhea can.

5

So when you tried the initial TRT protocol (T+AI+HcG), you felt nothing? I don’t want to back track but do you have labs for when you were on this protocol?

6

Now those are some interesting lab results!

Best bet is to not mess around with anything until you can find out why your pregnenolone and progesterone are so high.

It’s weird that you have normal cortisol and ACTH, though.

We have nearly the same symptoms but my pregnenolone is on the low side and progesterone is about midrange. But my T is normalized with TRT

7

[quote]Hardasnails wrote:

[quote]Substance P wrote:
I started taking zinc for about two weeks after those labs. Once i got them back i stopped immediately. So not really enough time to do anything. The rest of my supplements are clean of copper and zinc. [/quote]

As mentioned in clincal studies show you have 2 of the qualifcations for CAH which seems to fit your blood profile. We are still waiting for other testing results. Again this need to be further examined by an endo to rule it out. I will be preparing the letter for your endo this friday so we can get that under way.

Screwing around with e2 at this time would not be a good idea because since you are getting your morning erections back then we do not want to upset the cart until other areas need to be further investigated which have already been noted. Tinker with too many variables can cause invalid reading and can alter therapy out come when determined.

Dhea is last thing that needs to be dealt with right now, Not so much is really known about it. If worst comes to worse we would go with TD dhea as it will not affect estrogen like oral dhea can. [/quote]

Glad to know that WE are making progress Hans, I am having problems finding an Endo, since there is only one in all of upper michigan. However I will be ready to at least see a gp when the letter is complete. Im glad to know that you are still working hard on this.

8

[quote]B WS6 wrote:
So when you tried the initial TRT protocol (T+AI+HcG), you felt nothing? I don’t want to back track but do you have labs for when you were on this protocol?[/quote]

All of my labs have been posted. I def popped wood about every 5 minutes. However not much as far as decreasing anxiety, no improved sense of well being, i still felt like something was way off and my joints did not get any better. So i decided to go off before any labs were required (the endo i had was a pile…he wanted to test every 6 months).

9

[quote]chemman wrote:
Now those are some interesting lab results!

Best bet is to not mess around with anything until you can find out why your pregnenolone and progesterone are so high.

It’s weird that you have normal cortisol and ACTH, though.

We have nearly the same symptoms but my pregnenolone is on the low side and progesterone is about midrange. But my T is normalized with TRT [/quote]

I agree with this. I just wish i felt a little better in the mean time :-(.

10

[quote]Substance P wrote:

[quote]chemman wrote:
Now those are some interesting lab results!

Best bet is to not mess around with anything until you can find out why your pregnenolone and progesterone are so high.

It’s weird that you have normal cortisol and ACTH, though.

We have nearly the same symptoms but my pregnenolone is on the low side and progesterone is about midrange. But my T is normalized with TRT [/quote]

I agree with this. I just wish i felt a little better in the mean time :-(. [/quote]

Of course.

Didn’t you see a rheumatologist about your joints? What did they say? Get any imaging done?

You should try and get something a litte stronger than naproxen like a prescription NSAID [meloxicam, etc.]. It has helped me stay on my feet. Fish oils really helped my joints but they mess me up in other weird ways so I stopped taking them.

Do you experience hypoglycemia, weakness, shaking, etc.?

11

[quote]chemman wrote:

[quote]Substance P wrote:

[quote]chemman wrote:
Now those are some interesting lab results!

Best bet is to not mess around with anything until you can find out why your pregnenolone and progesterone are so high.

It’s weird that you have normal cortisol and ACTH, though.

We have nearly the same symptoms but my pregnenolone is on the low side and progesterone is about midrange. But my T is normalized with TRT [/quote]

I agree with this. I just wish i felt a little better in the mean time :-(. [/quote]

Of course.

Didn’t you see a rheumatologist about your joints? What did they say? Get any imaging done?

You should try and get something a litte stronger than naproxen like a prescription NSAID [meloxicam, etc.]. It has helped me stay on my feet. Fish oils really helped my joints but they mess me up in other weird ways so I stopped taking them.

Do you experience hypoglycemia, weakness, shaking, etc.?[/quote]

None of the above. I did see a few docs who did imaging tho. Most of them agreed it was a problem with the collagen being too elastic - however the offered no clinical diagnosis. It just seems like all my tendons are deteriorating - especially where they attach to a joint.

12

I remember digging through some old old posts on here and another site and finding a guy who had lost a lot of weight as well due to an ED, and was on trt for a few years. I emailed him and asked him how things were going and he said they were great, and he had managed to come off trt and re-start with fairly high levels. So, it does seem possible for some people and you may be one of the lucky ones.

13

[quote]boatnerj wrote:
I remember digging through some old old posts on here and another site and finding a guy who had lost a lot of weight as well due to an ED, and was on trt for a few years. I emailed him and asked him how things were going and he said they were great, and he had managed to come off trt and re-start with fairly high levels. So, it does seem possible for some people and you may be one of the lucky ones.[/quote]

Lets hope so! Now i just need to keep putting together more of the puzzle.

14

I just had a visit with a new Primary Care Doc today. He was a resident!. We talked about it a bit and exchanged ideas. I couldn’t believe how open he was to discuss it. He actively had Wikipedia open the whole time and was doing research about some things i was asking about. He admitted that i should see a rheumy at a large university.

However he asked me if i wanted any tests done. We agreed that a urinary copper would be good to rule out Wilsons. He did mention that the ceruloplasmin is not that low but if i am concerned then we should check it out.

We talked about The adrenal Hyperplasia quite a bit. He told me he was convinced enough that i did not have it that it wouldn’t warrant any tests. When i asked why, he mentioned that my sodium and potassium ratio was perfect and that it is almost always out of wack with CAH patients.

Doctors always mention to me that since my skin is so stretchy they believe i may have Ehlersâ??Danlos syndrome but cannot find hypermobility in any of my joints. They always tell me to hit the gym harder to strengthen the supporting muscle but that makes no sense due to the fact that my joints hurt to bad to push iron. My skin is stretchy most likely because i lost 70 lbs.

So i was referred to a rheumatologist for now. We will see how it turns out. I will be seeing as many doctors as possible until i can figure this thing out. At least for now i have a urinary copper test

15

[quote]Substance P wrote:
I just had a visit with a new Primary Care Doc today. He was a resident!. We talked about it a bit and exchanged ideas. I couldn’t believe how open he was to discuss it. He actively had Wikipedia open the whole time and was doing research about some things i was asking about. He admitted that i should see a rheumy at a large university.

However he asked me if i wanted any tests done. We agreed that a urinary copper would be good to rule out Wilsons. He did mention that the ceruloplasmin is not that low but if i am concerned then we should check it out.

We talked about The adrenal Hyperplasia quite a bit. He told me he was convinced enough that i did not have it that it wouldn’t warrant any tests. When i asked why, he mentioned that my sodium and potassium ratio was perfect and that it is almost always out of wack with CAH patients.

Doctors always mention to me that since my skin is so stretchy they believe i may have Ehlersâ??Danlos syndrome but cannot find hypermobility in any of my joints. They always tell me to hit the gym harder to strengthen the supporting muscle but that makes no sense due to the fact that my joints hurt to bad to push iron. My skin is stretchy most likely because i lost 70 lbs.

So i was referred to a rheumatologist for now. We will see how it turns out. I will be seeing as many doctors as possible until i can figure this thing out. At least for now i have a urinary copper test
[/quote]

After doing some thing about things.
I would get tested for hla-b27 gene for amyloid spondylitis since this may be at potential.
Also get an amino acid urinary profile spot done on an empty stomach to check for any imbalances in the sequeneces.

I am glad that we where able to start uncovering specfic pieces to the puzzle and we will keep on digging, but what I mentioned above my explain your joint pains may be the direction you want to go with the other dr’s. I am seeing more and more autoimmune disorders popping up in younger people.

16

Describe your joint pain in detail. Is it worse when you wake up and then improves as you move around?

Didn’t you already test positive for the HLB27 gene?

There is a chance that you have ankylosing spondylitis, especially considering the tendon issues. Ankylosing spondylitis can affect much more than just the back.

HAN: It’s ANKYLOSING spondylitis.

17

[quote]Hardasnails wrote:

[quote]Substance P wrote:
I just had a visit with a new Primary Care Doc today. He was a resident!. We talked about it a bit and exchanged ideas. I couldn’t believe how open he was to discuss it. He actively had Wikipedia open the whole time and was doing research about some things i was asking about. He admitted that i should see a rheumy at a large university.

However he asked me if i wanted any tests done. We agreed that a urinary copper would be good to rule out Wilsons. He did mention that the ceruloplasmin is not that low but if i am concerned then we should check it out.

We talked about The adrenal Hyperplasia quite a bit. He told me he was convinced enough that i did not have it that it wouldn’t warrant any tests. When i asked why, he mentioned that my sodium and potassium ratio was perfect and that it is almost always out of wack with CAH patients.

Doctors always mention to me that since my skin is so stretchy they believe i may have Ehlers�¢??Danlos syndrome but cannot find hypermobility in any of my joints. They always tell me to hit the gym harder to strengthen the supporting muscle but that makes no sense due to the fact that my joints hurt to bad to push iron. My skin is stretchy most likely because i lost 70 lbs.

So i was referred to a rheumatologist for now. We will see how it turns out. I will be seeing as many doctors as possible until i can figure this thing out. At least for now i have a urinary copper test
[/quote]

After doing some thing about things.
I would get tested for hla-b27 gene for amyloid spondylitis since this may be at potential.
Also get an amino acid urinary profile spot done on an empty stomach to check for any imbalances in the sequeneces.

I am glad that we where able to start uncovering specfic pieces to the puzzle and we will keep on digging, but what I mentioned above my explain your joint pains may be the direction you want to go with the other dr’s. I am seeing more and more autoimmune disorders popping up in younger people. [/quote]

I am HLAB27 Positive but the imaging of my low back shows no signs of AS. I will get it checked out but they have “ruled it out” before.

18

[quote]chemman wrote:
Describe your joint pain in detail. Is it worse when you wake up and then improves as you move around?

Didn’t you already test positive for the HLB27 gene?

There is a chance that you have ankylosing spondylitis, especially considering the tendon issues. Ankylosing spondylitis can affect much more than just the back.

HAN: It’s ANKYLOSING spondylitis. [/quote]

My joint pain did not randomly pop up one day. I had accumulating injuries which seemed to be overuse injuries since the age of 16. I would be lifting or playing ball and it would appear as though the tendons would get inflamed bilaterally. Effecting both sides of the body and then the joint would just never seem to heal. So now my shoulder tendons and all elbow tendons burn and ache whenever i perform the smallest tasks. It effects both shoulders and both sides of the elbow bilaterally. Both knees also seem shot. My lower back had a disc rupture when i was 17 and that is always sore.

It appears as though the tendons were just weak and broke down and now they won’t heal. For example carrying groceries hurts the elbows, Anything overhead even threading a shoulder curtain hurts the shoulders. Its like a deep burning. Pushups have been out of the question for about 4 years now.

I will ad that i still feel like total shit. Massive depressive feelings and anxiety.

I don’t really know how else to describe it. I hope that helps.

19

[quote]Substance P wrote:

[quote]chemman wrote:
Describe your joint pain in detail. Is it worse when you wake up and then improves as you move around?

Didn’t you already test positive for the HLB27 gene?

There is a chance that you have ankylosing spondylitis, especially considering the tendon issues. Ankylosing spondylitis can affect much more than just the back.

HAN: It’s ANKYLOSING spondylitis. [/quote]

My joint pain did not randomly pop up one day. I had accumulating injuries which seemed to be overuse injuries since the age of 16. I would be lifting or playing ball and it would appear as though the tendons would get inflamed bilaterally. Effecting both sides of the body and then the joint would just never seem to heal. So now my shoulder tendons and all elbow tendons burn and ache whenever i perform the smallest tasks. It effects both shoulders and both sides of the elbow bilaterally. Both knees also seem shot. My lower back had a disc rupture when i was 17 and that is always sore.

It appears as though the tendons were just weak and broke down and now they won’t heal. For example carrying groceries hurts the elbows, Anything overhead even threading a shoulder curtain hurts the shoulders. Its like a deep burning. Pushups have been out of the question for about 4 years now.

I will ad that i still feel like total shit. Massive depressive feelings and anxiety.

I don’t really know how else to describe it. I hope that helps. [/quote]

What kind of imaging on the back? There are different types of ankylosing spondylitis. Many do not have fusion.

In my case, it’s looking like undifferentiated seronegative AS. The undifferentiated means that there is no radiological evidence of fusion… yet. If you can see evidence of fusion of the SI joint or the spine, then it is differentiated, and is called plain ol’ ankylosing spondylitis. At that point, you have probably had the active disease process for quite some time.

It’s a confusing disease. I am still learning every day. May I suggest spondylitis.org? Check out the forums and read the list of symptoms etc. people have reported and see if it sounds familiar.

I will also admit that consistent use of anti-inflammatory medicine [meloxicam] has lifted some of my depressive issues, although has certainly not “cured” my joint problems.

20

[quote]Substance P wrote:

[quote]chemman wrote:
Describe your joint pain in detail. Is it worse when you wake up and then improves as you move around?

Didn’t you already test positive for the HLB27 gene?

There is a chance that you have ankylosing spondylitis, especially considering the tendon issues. Ankylosing spondylitis can affect much more than just the back.

HAN: It’s ANKYLOSING spondylitis. [/quote]

My joint pain did not randomly pop up one day. I had accumulating injuries which seemed to be overuse injuries since the age of 16. I would be lifting or playing ball and it would appear as though the tendons would get inflamed bilaterally. Effecting both sides of the body and then the joint would just never seem to heal. So now my shoulder tendons and all elbow tendons burn and ache whenever i perform the smallest tasks. It effects both shoulders and both sides of the elbow bilaterally. Both knees also seem shot. My lower back had a disc rupture when i was 17 and that is always sore.

It appears as though the tendons were just weak and broke down and now they won’t heal. For example carrying groceries hurts the elbows, Anything overhead even threading a shoulder curtain hurts the shoulders. Its like a deep burning. Pushups have been out of the question for about 4 years now.

I will ad that i still feel like total shit. Massive depressive feelings and anxiety.

I don’t really know how else to describe it. I hope that helps. [/quote]

Have you taken quiolones (levaquin,cipro,ect) with in this time frame?