Nerve Degenerative Disease, wasting and testosterone

Hey, guys -- Wondered if you could have a look at my test results below and tell me what you think. I am 62 and for the past 15 years have been dealing with a progressive, muscle-wasting, nerve killing disease called chronic inflammatory demyelinating polyneuropathy. I sleep well, I stopped drinking a month ago for good, my beloved vodka having worsening effects on the nerves in my legs. My balance is shot and I'm chronically tired. OTOH, I'm a surfer and continue to surf, albeit no longer with any skill, and it leaves me having to take a nap almost immediately afterwards.
A few months ago, I got a Dr to prescribe T for me, to try to deal with the muscle atrophy. (I can no longer ride a bike or walk a block.) I injected myself 3 times, over three weeks, and each time, my legs and feet fuzzed up and numbed out 3x how they normally feel. This freaked me out, so I stopped. The bloodwork was taken about 2 weeks after my last shot.
I live in a small state, in a small town, and there are NO good doctors for this stuff within 100 miles of me. My neurologist is purely reactive and won't even discuss T with me. My primary will give me anything I want, but doesn't know doodly squat about my condition. There's a local endo who i'm trying to see, in the hopes she has some experience with CIDP and what testosterone might do or not do for it. Or maybe I don't even need T.
Drugs I take: levothyroxine, nuvigil or adderall (for exhaustion), wellbutrin, zoloft.
Thanks for any thoughts or suggestions you might have!
P.S. Even though I've lots tons of muscle -- in my feet and legs, in my fingers and arms, everyplace, basically -- I still have lots of belly fat and jelly in my legs. So, my weight has remained the same, around 165 lbs, while I continue to get weaker and weaker ....


Test Result Flag Reference
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TESTOS.BIO | | |
TESTOSTERONE | 335 | | 250-827 ng/dL

TESTOSTERONE | 514 | | 250-1100 ng/dL
|
FREE TESTOSTER. | 46.5 | | 46.0-224.0 pg/mL
TESTOS, BIOAV. | 89.6 | L | 110.0-575.0 ng/dL
SEX HORMONE BG | 53 | | 22-77 nmol/L
ALBUMIN | 4.2 | | 3.6-5.1 g/dL


I take Levothyroxine for hypothyroid condition. Here are my current lab results for that:
FREE T4 | 0.99 | | 0.58-1.20 ng/dL
FT3 | 3.31 | | 2.5-3.9 pg/mL
TSH | 0.19 | L | 0.34-5.60 mcIU/mL

Your SHBG could be lower, this will free up some free T. Also, how much Synthroid do you take? You may need to lower the dosage because you are hyperthyroid looking at your TSH. Talk to your doc about this. I take Nettle 800mg to lower my SHBG.

LEVOTHYROXINE 150 MCG TABLET is what I take and have been taking for the past couple of decades. This is the first time my TSH has been anything other than perfect. I did talk to my doctor about it and he told me that, though it registers low, it's really just fine. He had a convincing explanation for this but, due to memory fog, I have no clue what he said.
Thanks for weighing in. Maybe some others will have stuff to say about the rest of my issues.

If you are on TRT and your Total T is only 514, you need to double your dose or at least increase it significantly. You want your Total T to fall into the upper quartile of the normal range, or approximately between 825 and 1100 (assuming a top of range of 1100). You should also be injecting twice a week every 3.5 days.

I injected T only three times and stopped 2 weeks before the test that lead to the 514 reading. So, I'm not sure i can say I'm on TRT or not. Guess it depends on how long the T would have an impact on my reading.
Also, I stopped injecting T because it made my already numb feet and legs much number still. This may be the localized result of injecting T into my thigh muscle.
What's the best furtherest-away site from my feet and legs? Anyone know?

Ah, then the 514 T level makes more sense. You can inject into your shoulders with an insulin syringe, but where you inject should not matter at all in terms of your legs.

What was your T dose and schedule? (For example, 50 mg every 3.5 days)

linter- The shoulder. Watch Nelson's video. Bravo for still getting out to surf. I wonder if nandrolone or oxandrolone in concert with T might help with the wasting and fatigue. Have you tried aminos? Check out the tips on attacking visceral fat. Strategies successful for HIV might help you as well. Probiotics, Lipo-C, Isopure whey and clean digestible raw foods to boost enzyme intake are all worth a shot.

ERO- I respect your knowledge and experience. Playing the numbers game though is like driving your truck over some untested route that looks good on the screen but
is treacherous. My Tot T is also under 600. With free near the very top of the lab range it's true that I've got closer to 10 wheel traction with double lockers and deep reduction low in reserve to pull me out of the sand traps compared with lintner.

Agree 100%. The free T# is always important. I have the same issue with my low SHBG. My Free T is always crazy high at pretty much any T dose.

In Linter's case he has (had) relatively low Free T and only used T for 3 weeks, which is too short a time to really tell much of anything except for the fact that it made his leg issues worse. At first I did not catch the fact that he had only done 3 doses and thought he was on a TRT program with the low Free T and low Total T.

Ero: Maybe it shouldnt have an impact on my legs but it definitely did. And it was almost immediate. I could feel the numbness descending like a thick fog. I'm sure it has everything to do with the nature of my hated CIDP disease. I'll try an injection in my shoulder and see what happens.
My T dose was 100 mg once a week. And, like I said, I only did it three times before stopping.
I'm really hoping that T or something else can help me out with my failing, sagging muscles. Three years ago, my neurologist gave me 4 to 6 years before I'd be in a wheelchair. I hate doctors who give terrible predictions like that, but it has stuck with me ever since. And if he's right, gulp. I haven't given up the fight, however. At the same time, my disease is rare enough that no one really studies it and there are no acknowledged experts on it. So, everything is a crap shoot.
I've tried the standard treatments, with no success. Last one up is prednisone, which the doc is against, because of the complications.
So, I've been trying to find new treatments on my own ...

R-R: Great suggestions. I think nandrolone has been useful with MS. My thing is roughly in the MS family, so maybe it'd be helpful to me, too. I'll continue to research your other suggestions.

I did write Defy's office, to see if they had any experience with CIDP but haven't heard back from them. Hopefully, they have and hopefully I will.

linter

I am sorry that you have CIDP. Three years ago I was misdiagnosed with having it since my right hand started shrinking and I lost function of thumb and index finger. They had first thought it was a pinched cervical nerve but after many tests nothing was found. One of the main treatments for CIDP is IVIG. I went through weekly and bi-weekly IVs and after a few months saw no improvement. Then neurologists dismissed the CIDP and determined by diagnosis "undetermined". Since I have been HIV+ for 33 years, they assume that something triggered my immune system to eat up the myelin layer of my hand nerves. I had been exposed to Lyme Disease at that time, so that may have been it.

Have you used IVIG? It ain't cheap but it is covered by insurance as an orphan drug for CIDP.

CIDP Treatments

For wasting diseases, it is easy to get oxandrolone or nandrolone prescribed. 25 mg per day of oxandrolone or 200 mg nandrolone plus 200 mg per week of injectable testosterone can do wonders along with resistance exercise.

I will reply to an email you sent me (I am running behind on emails since I have another reconstructive hand surgery last week). The folks from Defy Medical have set up a patient assistance program for HIV that probably apply to you since CIDP is an autoimmune disease. I will contact you by email.



Glad you are here.

I'm really sorry to hear about your chronic inflammatory demyelinating polyneuropathy I have CRPS I started this thread https://www.excelmale.com/forum/showthread.php?6554-Nandrolone-for-CRPS-RSD I thought it could possibly apply to you. wish you the best and keep us updated!

Paul-E: thanks for the link. I will check out the thread. And I'm sorry to hear about your issues, too.

Nelson: First, if it twas you, thanks for moving my thread to a better more appropriate home.

Okay, now, yup, I tried IVIG, did the full course of it two times, with the same results as you: nothing. No improvement. Since then, my neurologist has had zero suggestions for treatment and, in fact, maintains there's nothing to be done for my condition. Which is why I'm so happy to have found you and this site and at least the potential to extend my surfing for a few more years, since it's about 90% of my enjoyment in life.

If you do get a chance to reply to my PM, that'd be great; if not, I understand how busy you must be.

For anyone who is interested in how a disease like CIDP can wreak havoc on a guy whose major goal in life is to be able to hang ten, here's a long-ass story I wrote about it for Outside magazine: http://www.outsideonline.com/1922561/learning-surf-without-feeling .

Check your email box. Sent you an email. I will help you out!

Okay, so I'm getting myself set up with Defy. Meanwhile, I'd like to see if injecting T into areas other than the thigh produce the same results as the thigh ones -- disconcerting fog and fuzz all up and down my legs. I'm thinking the belly and maybe the shoulder, though I don't have a lot of muscle there to inject into. And I'm thinking 50mg in each area spread out over a week.
I'm thinking to do this so I can tell Dr. Saya that I'm either okay with injecting or not.
I guess I'd only do it the two times to see.
Okay idea? Bad idea?
Thanks!

Having a low TSH is usually indicative of hypERthyroidism. However, thankfully your doctor ordered your Free T3 and Free T4, which showed that you are not hyperthyroid, but in normal range. When prescribing thyroid its important to use Free T3 to base dosing off of, so your doc is correct to say that the lower TSH is ok. Now, if your FT3 AND TSH were abnormal, you would need a dose adjustment.

TSH is the negative feedback loop for the thyroid. It comes from the pituitary and tells the thyroid when to make more thyroid hormone. So, if it is low, it means don't make more thyroid (because you have enough). And if TSH is high, its screaming at the thyroid to make more. Hence why most doctors base a hypothyroid diagnosis off of a high TSH. Although, in my opinion, a full thyroid panel gives a more accurate picture of what the problem is. Hope this helps! Let me know if you have more thyroid questions and good luck to you.

I'm sorry to hear that about the wasting and I wish you all the best and hope you will find the right treatment that will help you!

ERO said:

In Linter's case he has (had) relatively low Free T and only used T for 3 weeks, which is too short a time to really tell much of anything except for the fact that it made his leg issues worse. At first I did not catch the fact that he had only done 3 doses and thought he was on a TRT program with the low Free T and low Total T.

Click to expand...

Absolut!

I injected T only three times and stopped 2 weeks before the test that lead to the 514 reading.

Click to expand...

There is no way to interpret those numbers since he stopped 2 weeks prior the test. The blood work is a mix out of external testosterone and maybe his own testosterone... that's pure speculation. This test was done for the trash. Thyroid is another topic of course.

With low T my brain fog was huge. With external T the brain fog got way better! But it took me maybe 1 year to find the right supplements and I still have a huge way in front of me.

Okay, this is good to know. I wasn't going to get my T labs done again when signing up with Defy but now I will. Thanks.