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10-22-2012, 05:44 PM #41
Thought I would add a bunch of labs for you guys lol. These are what Shippen ordered. The first is from before our appointment going in. The second is a bunch of virus tests after our appointment. Not sure what he's trying to see here because apparently these viruses are all very common to have and usually aren't a big deal. Once you've had them you're positive for life and most people are.
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10-22-2012, 08:42 PM #42
XT I'm sorry I missed this! I've tried to follow this thread religiously. The cortisol scenario is interesting as high cortisol can inhibit T and lack of proper rest can elevate cortisol. Three injections of T per week, subq I assume? Great on the hcg as well. Even if primary it has wonderful benefits that you should not go without.
I'm thrilled you finally got in to see him XT. So happy for you man! Hope this course is what it takes to get you on healthy again! Shippen is amazing isn't he! Love to hear a little more about the general conversation you had. Please keep this going with your next blood work. Gonna take a look at the BW posted now.
Awesome XT
Edit to say that it would be great to have you do some more posting here XT. With what you've been through and the knowledge you've gained you can really contribute to the forum!
kelLast edited by kelkel; 10-22-2012 at 09:02 PM.
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10-22-2012, 09:38 PM #43
I hear you brother. It's just so overwhelming seeing the amount of people needing help. Also, I feel like a lot of the information I've learned is not from a primary source like a study or personal experience, but rather something I've read on a forum sticky or heard from a doctor or so and so and that I might be wrongly spreading incorrect information. I will definitely be hanging out more now that I've learned more.
As far as the injections being subq, I assume that means where you just inject into like the fat in your stomach? That's what I'm doing as opposed to like going into the muscle in my leg or something. Shippen actually sells you the syringes from his office so he brought in a baggy full of them and pulled one out and showed me how to do it and filled it with bacteriostatic water and actually did an injection on me right there (of the water) to kind of show me how it's done.
Another thing that might be relevant to the forum at large is his view on the free testosterone measurement. He says that because the amounts we are dealing with when talking about free testosterone are so incredibly small, it's not really a reliable test. Instead, he actually pulls out this chart, I forget exactly what the axes were but basically he calculates your optimal total testosterone level based on what your free testosterone would be with your given SHBG level. I hope that makes sense. Basically he accepts that free testosterone is what is important, but rejects that it can be directly tested for. Instead, he uses this chart to figure out, based on your total T and SHBG, whether or not you have the appropriate amount of free T.
I thought that was very interesting. Also interesting was that, specifically in my case as an anecdotal example, the estradiol NON-SENSITIVE i.e. the normal estradiol b/w test, in my amateur opinion, appears to be accurate enough. Multiple doctors questioned my estradiol b/w since it showed a level of mid-20s which is about normal, despite the fact I am so overweight which usually leads to very high estradiol levels since adipose tissue converts testosterone to estrogen. In fact, the Johns Hopkins guys told me my estradiol number was just plain wrong, and Shippen didn't believe it either and had me do a 5 day anastrazole trial. Well, I felt worse after that trial. I didn't even think that was possible. Guess what my blood work showed? My estradiol had gone from normal to low. That's the only way, as far as I see, that I could feel worse after taking an AI and the number seemed to accurately reflect this. I'm not saying throw out the sensitive assay, but I don't think we should throw out the non-sensitive estradiol reading either. Of course, this is one anecdotal story.
Yeah I'm happy to share whatever you want to know about the guy. He's very nice. He took a lot of time with me as I said before. Apparently he started out as a family practitioner and then started getting into endocrinology to the point where he basically is an endocrinologist and that's what he sees people for. But he said he's delivered babies, helped people through heart attacks, you name it. The town (Reading, PA) used to be very small and they didn't even have a cardiologist at the hospital at the time so that's how he got to do all those things.
He really addressed all of my points that I had and had a real gameplan for what to do next. I'm feeling pretty good about this and am eager to see what this hormone panel from Rhein labs is going to show. I just started my first injection today (I had been getting the hormone panel as well as all of those cortisol tests done last week) and will get new b/w in 3 weeks and call him up. Another 4 weeks from there we have another appointment. I've started the naltrexone and it definitely helps me go to sleep. The metformin we will have to see the b/w later on to see if that's working but so far I've been taking as prescribed. After our phone call I will begin taking the phentermine as per his instructions.
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10-23-2012, 08:52 AM #44
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12-13-2012, 05:00 PM #45
I had a very productive appointment with the Doc today. I will include the latest labs for your review but I will discuss them as well.
Unfortunately I do not have the Rhein Laboratories Hormone Panel (http://www.rheinlabs.com/hp.html)
The Rhein labs panel was really the breakthrough. This test not only tests for levels of hormones in your urine, but also metabolites. He explained it to me this way: if your body is using the hormones, it gets metabolized, resulting in metabolites. It may be possible to be overproducing a certain hormone, but if your body uses it really fast your tests may come up as normal if you don't test for the metabolites. High levels of metabolites mean the corresponding hormone is being overproduced.
My test showed that my cortisol was normal, as did the 5 other Cushing's tests endocrinologists have done because my symptoms so closely resemble Cushing's, but my cortisol metabolites were twice the upper limit of the reference range! It marked like 6 different metabolites as out of range.
I don't want to get ahead of myself, but my girlfriend and I are very optimistic about this. If you want more information on Cushing's syndrome, hit this link: http://www.mayoclinic.com/health/cus...ndrome/DS00470
Anyway I have copied for you the symptoms section and highlighted in red those symptoms that I have in common with Cushing's---
Symptoms
The signs and symptoms of Cushing's syndrome vary.
Common signs and symptoms involve progressive obesity and skin changes, such as:
- Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump)
- Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
- Thinning, fragile skin that bruises easily
- Slow healing of cuts, insect bites and infections
- Acne
Women with Cushing's syndrome may experience:
- Thicker or more visible body and facial hair (hirsutism) (I'm not a woman, but my legs and arms are extremely hairy and my father has almost no hair on his arms and legs)
- Irregular or absent menstrual periods
Men with Cushing's syndrome may experience:
- Decreased libido
- Decreased fertility
- Erectile dysfunction (reading between the lines, all three of these are due to low testosterone, which of course I have. Cushing's is known to interfere with other hormone production, which may explain why I am both primary hypothyroid AND primary hypogonad. Occum's razor-it's one all-encompassing diagnosis)
Other signs and symptoms include:
- Fatigue
- Muscle weakness
- Depression, anxiety and irritability
- Loss of emotional control
- Cognitive difficulties
- New or worsened high blood pressure
- Glucose intolerance that may lead to diabetes
- Headache
- Bone loss, leading to fractures over time
He is having me attempt to address it by using an OTC supplement known to arrest cortisol production. It's called Phosphatidyl Serine. We'll see how that goes to start but there are lots of routes to go if that doesn't work.
My insulin levels, despite having started metformin as well as switching to a totally clean diet under the supervision of my new nutritionist and getting my Total T to a good range (all of which should make my insulin levels go down), actually went up! This was kind of the aha moment for the Doc because there is no way that would happen unless something else was going, like Cushing's which causes insulin insensitivity.
He also is tweaking my thyroid medication because obviously my numbers are getting out whack. He doesn't like Armour Thyroid because 1) they changed the formula so it's 'not as good' and 2) you are stuck with the same ratio of T4 to T3. Different people have different supplementation needs for their T4 and T3 so a one-size-fits-all solution isn't appropriate. Instead he is going to have me take normal levothyroxine (generic of Levoxyl or Synthroid , basically a synthetic T4) in combination with a special time released version of T3 that he has his compounding pharmacy make.
My vitamin D as you can see has not only gone up for like the first time in 3 years, but is also optimal. I will therefore be staying at the 50,000 IU twice a week level (Monday & Thursday), which is OTC btw if anyone was wondering.
He seemed to be a little insulted that I didn't like doing the fill up your syringe for the week and use it 3 times before disposing technique, but he went ahead and gave me a script for 100 syringes and needles so I won't run out.
Lastly he decided that introducing a stimulant would be a good idea being that I have ADD-like symptoms anyway. I will have to discontinue the phentermine to do this. My girlfriend doesn't want me to start the new stimulant until I bring up my high RBC and Hematocrit because she is afraid it will increase my heart rate and in combination with those blood issues will risk getting a stroke or something. But typing this out, I realize that since Phentermine does essentially the same thing and she's okay with that, what's the difference?
I forgot to ask however about the high RBC and Hematocrit, which as I know from reading this forum, is a common side effect of TRT. My girlfriend is in Physician's Assistant school and told me that it's officially called Polycythemia vera. Check out this link if you want more info: http://www.mayoclinic.com/health/pol...a-vera/DS00919
Note: nowhere in the "causes" section is TRT ever mentioned...
What's really interesting is that I first started getting a bizarre and intense itchiness problem right after I started AndroGel . I always thought it was a coincidence because my Endo at the time said it wasn't a known side effect of AndroGel. Well, polycythemia vera is a known side effect of TRT, and that itchiness is a known symptom of polycythemia vera. Sure enough, you will see in the treatment section that it recommends antihistamines to treat the itchiness. I have been on Allegra 180mg since September when my allergist suggested I just randomly give it a shot. It worked the first day and has worked every day since. If I don't take it, the itching comes back within 6-18 hours. So I guess we have at least found a culprit for the itching.
Lastly, my T levels seem to be pretty good considering that test was done on a Monday when the last time I had a shot was Friday, as well as the fact that I have very low SHBG (on previous tests). My E2 is getting up there but doesn't quite warrant an AI yet so we will see. Next appointment I plan to discuss starting HCG . Sticking with current protocol of 3 injections of .45 mg a week Depo-test.
Below are my charts updated with the latest info, mostly just because Kel gets a kick out of it:
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