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Lobster

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Re: WHY don't we pay attention to this?
Reply #375 - Jul 28^th, 2011 at 11:44am

DennisM1045 wrote on Jan 21^st, 2010 at 2:10pm:

Count me in. Based on this thread and associated research I had my T level checked.

116 - should be at least 280.

I started gel therapy today.

-Dennis-

Took me 8 pages of browsing to find someone say what their level is! (I probably missed one or two)

My results just came back... 142. I am supposed to be 600.

Checked my nuts... still there.

Doc is out on vaca, but I am expecting the arrival of some Clomid any day now. Lets see how this works.

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: WHY don't we pay attention to this? Reply #376 - Jul 28^th, 2011 at 12:28pm Good luck Lobster man. This stuff is still kicking it to the curb for me. I hope your results are the same. -Dennis-
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Lobster CH.com Alumnus Offline Posts: 2417 Gender:	Re: WHY don't we pay attention to this? Reply #377 - Jul 28^th, 2011 at 1:07pm DennisM1045 wrote on Jul 28^th, 2011 at 12:28pm: Good luck Lobster man. This stuff is still kicking it to the curb for me. I hope your results are the same. -Dennis- Good deal bro. Keeping my fingers crossed. Did anyone here have luck with Clomid? Or is everyone doing the gel or other T directly?
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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #378 - Jul 30^th, 2011 at 6:50pm

Lobster wrote on Jul 28^th, 2011 at 1:07pm:

DennisM1045 wrote on Jul 28^th, 2011 at 12:28pm:

Good luck Lobster man. This stuff is still kicking it to the curb for me. I hope your results are the same.

-Dennis-

Good deal bro. Keeping my fingers crossed.
Did anyone here have luck with Clomid? Or is everyone doing the gel or other T directly?

I don't see why Clomid won't do the job as it should raise your testosterone significantly, however, long term clomid use hasn't been studied near to the same extent as testosterone supplementation.

I'm sticking with the gel for now but I am going to be asking the clomid question at my upcoming appointment with an endocrinologist.

p

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Paul
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Ricardo

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Re: WHY don't we pay attention to this?
Reply #379 - Aug 8^th, 2011 at 11:47am

Been on the Testim gel for about 3 months now, no help with the headaches, but at least I don't feel like I'm struggling to stay awake when I'm driving. I am surprised this isn't something tested for more often with clusters, maybe in time Docs will know as much as us. Wink

I was also really surprised to find that one of the biggest symptoms of low testosterone is depression...How many men have gone to a Doc with depression symptoms and gotten there T levels tested? Usually they just come home with Prozac...Sigh...

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Lobster CH.com Alumnus Offline Posts: 2417 Gender:	Re: WHY don't we pay attention to this? Reply #380 - Aug 15^th, 2011 at 10:45am My MD prescribed something relatively new it seems... Axiron. The pharmacy had to order it in. Will stay on the Clomid until that arrives.
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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #381 - Sep 1^st, 2011 at 11:58am

I'm worried!

saw the endocrinologist

Diagnosed me with toxic high testosterone levels... I have been on supplementation with Androgel for a couple years now with excellent CH management.

So the plan is to reduce supplementation (wean off to nil for a period of time) and then rebalance/stabilize hormones with a more strategic supplementation.

Doctor says to expect some huge mood swings, some fatigue, gonna feel like shit for a period of adjustment, expect a fat weight loss (sweet), hair loss/thinning should stop, should get better sleep, reduce/end sleep apnea, increase testes, improve red blood cell balance (reduce risk of heart event), detox liver, and arrest a very recent gymncomastia side effect before it gets troublesome.

This is my traditional CH season so weaning off at this time is potentially very scarey.

I can go back on once testoterone once things rebalance and the doseage will have to be lower to keep in a "safe" range and prvent future toxicity.

Will a "safe" testosterone range be enough to control this?

grrrr

Had a great couple years.... and I'll get this new challenge sorted in time.

Paul

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Paul
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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: WHY don't we pay attention to this? Reply #382 - Sep 2^nd, 2011 at 8:01pm Wow Paul, that's scary. I'd hate to lose this weapon even for a little bit. How has it been going? Were you experiencing symptoms or did they find this by watching your levels? Keep us posted. BTW, my latest PSA numbers look good. Down a full point from February. -Dennis-
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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #383 - Sep 6^th, 2011 at 7:50pm

DennisM1045 wrote on Sep 2^nd, 2011 at 8:01pm:

Wow Paul, that's scary. I'd hate to lose this weapon even for a little bit. How has it been going?

Were you experiencing symptoms or did they find this by watching your levels?

Keep us posted.

BTW, my latest PSA numbers look good. Down a full point from February.

-Dennis-

Great psa results Dennis.

I have been feeling "weird" lately, and experiencing moods, uncharacteristic loss of hair, more acne, always feeling energized and unable to rest/sleep, beginning gynocomastia, breast soreness, some fluid retention.

Endocrinologist immediately said tesosterone toxicity and checked my levels and they are off the charts...so here i am 6 days after stopping HRT and I am tired feeling like crap but touch wood no CH....yet... today they did another exhaustive round of blood tests to see where I am at now....once I get stable (hopefully soon) he will reintroduce a more controlled and much more closely monitorred HRT...hopefully a less aggressive approach will reap the same benefits.

My prostrate has checked out fine.

Paul

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Paul
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Batch

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Re: WHY don't we pay attention to this?
Reply #384 - Sep 6^th, 2011 at 11:36pm

Hey All,

I've been a member of the Vitamin D Council for nearly a year and thought the following announcement might be of interest given the recent topics in this thread.

Take care,

V/R, Batch

Vitamin D and cancer campaign launched today

SAN LUIS OBISPO, CA, September 6, 2011 – The Vitamin D Council, a nonprofit educational corporation based in California, launches their “Vitamin D and Cancer” campaign today, presenting 20 detailed summaries of the evidence on the role of vitamin D in preventing cancer. Epidemiologist Dr. William Grant prepared the evidence-based summaries. He is the founder of the nonprofit organization, Sunlight, Nutrition and Health Research Center (SUNARC) and serves as the Science Director for the Vitamin D Council.

Some researchers believe the link between vitamin D sufficiency and a decreased risk in cancer is promising. A randomized controlled trial found a 77% reduction in all-cancer incidence when the study group supplemented with 1100 IU/day of vitamin D plus 1450 mg/day calcium. Says Dr. Grant, “Based on various studies of UVB, vitamin D and cancer to date, it appears that global cancer burden can be reduced by 15-25% if everyone had vitamin D blood levels above 40 ng/ml.”

The summaries can be found under the “Health conditions” tab on the Vitamin D Council website, or more specifically at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

. The Vitamin D Council hopes the campaign will spread more awareness about the importance of vitamin D sufficiency and the dangers of vitamin D deficiency.

Top ten facts about vitamin D and cancer (presented in the summaries):

1. Many studies have found solar ultraviolet-B (UVB) and vitamin D associated with reduced risk of breast, colon, and rectal cancer.
2. A randomized controlled trial with 1100 IU/day vitamin D3 plus 1450 mg/day calcium found a 77% reduction in all-cancer incidence.
3. Geographical studies have found reduced risk in mortality rates for 20 types of cancer in regions of higher solar UVB doses.
4. Observational studies have found that the risk of breast, colon, and rectal cancer fall as vitamin D blood levels rise at least up to 40 ng/mL (100 nmol/L).
5. Mechanisms have been proposed to explain how vitamin D acts to reduce the risk of cancer from starting, growing, and spreading.
6. Those who develop nonmelanoma skin cancer may have produced enough vitamin D to reduce their risk of internal cancers.
7. Those with higher vitamin D blood levels at time of cancer diagnosis had nearly twice the survival rate of those with the lowest levels.
8. African-Americans have an increased risk of cancer in part due to lower vitamin D blood levels because of darker skin.
9. Higher UVB exposure early in life has been found associated with reduced risk of breast and prostate cancer.
10. Those diagnosed with breast, colon and prostate cancer in summer in Norway had higher survival rates than those diagnosed in winter.

Forward to a Friend
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Copyright © 2011 The Vitamin D Council, All rights reserved.
You are receiving this because you signed up to regular email newsletters on the Vitamin D Council website.

Our mailing address is:
The Vitamin D Council
1241 Johnson Ave. #134
San Luis Obispo, CA 93401

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Donna.m.har

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Re: WHY don't we pay attention to this?
Reply #385 - Sep 11^th, 2011 at 1:28pm

I find your post very interesting, Batch, ...and scarey for me. Three months ago, and also for the first time that I know of, my doctor checked my Vitamin D while doing a blood work-up. My level was 8 (eight)! From what I understand, it should be between 32 and 100, so 8 is almost nothing.

He prescribed 50,000 IU weekly. This doesn't sound like enough now.

My doc's getting a call from me tomorrow.

Thanks for posting this information, Batch. You've done me a great service.

@Paul....I'm saying a little prayer for you in getting this all straightened out and back on the road to a pf life. You've helped more people than you'll ever know by sharing your journey......keep it coming, please.

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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #386 - Sep 17^th, 2011 at 9:19am

Donna.m.har wrote on Sep 11^th, 2011 at 1:28pm:

@Paul....I'm saying a little prayer for you in getting this all straightened out and back on the road to a pf life. You've helped more people than you'll ever know by sharing your journey......keep it coming, please.

Thanks Donna

The last couple weeks have been a roller coaster of emotions and feelings and sweats and CH shadows and paranoia about them coming back...i wouldnt wish this blah feeling on anyone.

Just had another blood workup and testosterone levels are somewhat lower (safer ) now....apparently my own body is now producing more than before....doc says that perhaps the hrt has made the body need more testosterone and is now signalling to produce more by iteslf...still too early to tell but more blood work scheduled for next week. It would be so cool if i produce enough now to keep the CH at bay without supplementation and the associated side effects.
I am contiuing to work out three times a week doing heavy lifting (330 pound deadlifts and 285 pound back squats) and my strength is being maintained despite the feeling of not wanting to do anything...i am forcing myself to keep up all my daily routines despite feeling like shit and energyless.

Another week to another visit to the endocrinologist and i will report back more following that visit.

And for the record my psa is 2.46 and has been consistently stable throughtout the past two years of hrt.

Paul

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« Last Edit: Sep 17^th, 2011 at 9:20am by MITYRARE »

Paul
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Kevin_M

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Re: WHY don't we pay attention to this?
Reply #387 - Sep 17^th, 2011 at 12:15pm

Unrelated to current topics here, but this story made the news circuit a few days ago.

Fatherhood 'lowers testosterone to keep men loyal'

By Michelle Roberts

Health reporter, BBC News

12 September 2011

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-----------

This site picked up the story and has links to other testoterone related articles

Fatherhood 'lowers testosterone'

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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« Last Edit: Sep 17^th, 2011 at 12:17pm by Kevin_M »

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DennisM1045

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Re: WHY don't we pay attention to this?
Reply #388 - Sep 22^nd, 2011 at 7:51pm

MITYRARE wrote on Sep 17^th, 2011 at 9:19am:

Donna.m.har wrote on Sep 11^th, 2011 at 1:28pm:

@Paul....I'm saying a little prayer for you in getting this all straightened out and back on the road to a pf life. You've helped more people than you'll ever know by sharing your journey......keep it coming, please.

Thanks Donna

The last couple weeks have been a roller coaster of emotions and feelings and sweats and CH shadows and paranoia about them coming back...i wouldnt wish this blah feeling on anyone.

Just had another blood workup and testosterone levels are somewhat lower (safer ) now....apparently my own body is now producing more than before....doc says that perhaps the hrt has made the body need more testosterone and is now signalling to produce more by iteslf...still too early to tell but more blood work scheduled for next week. It would be so cool if i produce enough now to keep the CH at bay without supplementation and the associated side effects.
I am contiuing to work out three times a week doing heavy lifting (330 pound deadlifts and 285 pound back squats) and my strength is being maintained despite the feeling of not wanting to do anything...i am forcing myself to keep up all my daily routines despite feeling like shit and energyless.

Another week to another visit to the endocrinologist and i will report back more following that visit.

And for the record my psa is 2.46 and has been consistently stable throughtout the past two years of hrt.

Paul

Keep us posted Paul. Scary stuff indeed.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Pixie-elf

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busting is the best!

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Re: WHY don't we pay attention to this?
Reply #389 - Sep 30^th, 2011 at 4:46pm

It took me almost 3 years to convince SOMEONE to check my freaking hormones.

They finally did, I was sent to an endocrinologist, and he re-did the tests. He wanted them done early in the morning because he said the levels get lower throughout the day.

Turned out my testosterone was a little high, I was put on Spironolactone.

Any other ladies have too much T?

I'll report if it helps my head any.

I've been busting to keep my headaches under control. I'm still chronic, but I'm in low cycle, which is a walk in the park compared to what I WAS dealing with.

Mystina

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As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
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Imitrex4Breakfast

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Re: WHY don't we pay attention to this?
Reply #390 - Oct 1^st, 2011 at 1:44am

I heard about this years ago and had my T level tested while in the hospital and having relentless attacks. My levels were said to be normal, but on the low side of normal. I went ahead and had T injections at the hospital for days, but it wasn't helping the attacks. Only DHE infusions or high doses of steroids like Solu Medrol were stopping the attacks. I Never had anymore T level meds, but I did have another test or two when hospitalized and it was said to be within normal range.

I also am said to have low Vit D levels several times when hospitalized, but I always thought of this is being caused by staying inside so much (Due to the sheer number of attacks and intensity of the attacks. I hate to have attacks in public!) I have often taken Vit D pills while hospitalized and was told to take Vit D supplements. When I went to the pharmacy with my RX, they said it was all OTC and pointed me to what I needed and at that time, I could not afford all that I would need. (another $40-$50 a month)

Clomid - Todd Rozen tried me on this for awhile and it did NOTHING to help stop, prevent, or reduce the attacks. I don't remember how long I did it for now. Seems like I was on it for a couple, or a few months. That was back in 2004 or 2005.

I4B

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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #391 - Oct 6^th, 2011 at 6:35am

Bad news

I've been off Testosterone for a little over a month and this past week CH came back... this is not good.

Doc was hoping for a complete three month detox before re introducing a lower dose but now says he wants to wait another three weeks before reviewing things.. i am not sure I will wait so long before restarting myself on HRT.

not happy

Paul

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Paul
"car crazy"

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alleyoop CH.com Hall of Famer Offline Am I self-centered or is it just me? Posts: 1177 Hiawassee, GA USA Gender:	Re: WHY don't we pay attention to this? Reply #392 - Oct 6^th, 2011 at 7:54am Hang in there Paul, and keep us posted please. Bob
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DennisM1045

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Re: WHY don't we pay attention to this?
Reply #393 - Oct 6^th, 2011 at 12:49pm

Crap! What about other options Paul? O2, Imitrex, other prevents? I know nothing worked in the past but T overdose will bring on its own set of issues - as you've already seen. Maybe a fresh hunt will turn up something new.

Sometimes, in the middle of our torment, we can lose sight of the bigger picture. I completely understand the desire to reach for what you know works. But your long term health has to be factored in here and I want to see you around this place for a long time to come.

(see it really is all about me Wink

)

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Imitrex4Breakfast CH.com Veteran Offline Posts: 200 Kentuckiana Gender:	Re: WHY don't we pay attention to this? Reply #394 - Oct 7^th, 2011 at 5:15am Vit D level is down again. Doc says it's "9.9 and it should be 30-100". I start Vit D 50,000 units once a week starting today. Be careful with that Clomid people. You could end up pregnant w/ multiple babies
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Pixie-elf

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busting is the best!

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Re: WHY don't we pay attention to this?
Reply #395 - Oct 7^th, 2011 at 5:03pm

Paul: I hope you feel better soon, and that the 3 weeks pass before you know it. :/

The Spironolactone seems to have made my head a little bit worse. I cut the dose in half because I'm foggy all the time, and was having a pretty constant headache / shadow at all times, along with increased hits.

Doing better now that I cut it down. Still not feeling great.

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« Last Edit: Oct 7^th, 2011 at 5:13pm by Pixie-elf »

As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

It's saved my life.

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Donna.m.har

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Re: WHY don't we pay attention to this?
Reply #396 - Oct 10^th, 2011 at 10:03am

I try to put myself in your place and it scares me to death, Paul. I don't even want to try to imagine my clusters coming back. What would I do with out any line of defense!!! That's not a question because there's no answer, it's a statement. My heart goes out to you, and my prayers for a quick answer are with you.

It's not our place to preach to you. You will do what ever you want to do anyway. I just ask you to seriously think what advice you'd be giving out if the shoe was on the other foot. Knowing that your body is already over the top in HRT, would you advise someone to take more?

We need to hear from you regularily. You don't list an e-mail address so I don't know if anyone knows how to contact you.

This isn't the end of HRT treatment...it is a lesson that we need to check our levels much more frequently, for one thing. Your experiences have furthered an important study and we are lucky that you had the desire to go this route and to share it with us.

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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #397 - Oct 13^th, 2011 at 9:01am

Donna, you are very wise and I am resisting the temptation to restart HRT.

My natural hormone production has restarted since my last post and i am exercising heavier and harder than ever... exercise is known to boost testosterone production...and may be partly responsible (along with increase oxygen flow) for relief that some experience when they run or exercise hard when being hit.

The hits are somewhat tolerable right now and only ocurring once per day which is a relief.

Back to the endo soon for more tests and to create a plan of action...he seems to think that when the body has been used to sooo much testosterone over the past two and half years that the pituitary may order up extra production from my body and therefore not require supplementation...he has seen this phenomenon before...sounds sketchy to me right now, but time will tell and I am willing to tough it out for a bit to find out at which levels my body rebalances.

Thanks for the concern everyone

I am not going anywhere, and will update as information is discovered...and anyone is free to pm me if you wish.

I received one nice pm when I was feeling pretty low and it was appreciated...

I believe this forum is vital to coping with this animal, and i will be around.

I am not so regular on here during my busy work season but from now on i will have more time to daily monitor the activities of the forum until next spring's road construction season returns.

Paul

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Paul
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MITYRARE

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Re: WHY don't we pay attention to this?
Reply #398 - Oct 25^th, 2011 at 6:02pm

Update time

Restarting HRT under very close scrutiny of an army of medical professionals...

I have detoxed from the extremely elevated levels of "free testoterone" and the accompanying dangerously high hemoglobin levels (risk of clot/stroke/heart attack)...apparently extremely high hormone levels will make the hemoglobin go too high as well.

After stopping HRT, my levels dropped way low and then have gradually climbed but are still just low from the "normal" scale for someone my age.

Endocrinologist has restarted me earlier than he would have liked except the CH thing is a wrinkle he is unaccustomed to, but seems compassionate about..

....that being said he is starting me at a dose way lower than what is normally prescibed as a beginning dose.

... this will be followed with close monitorring....he wants to give me a conservative "enough" treatment to stop the CH but not so much as other complications could result.

Liver and kidney function tests are all good.

Cautious optimism and this conservative approach may be a better alternative to the all out assault my GP had originally prescribed (although it worked very well for almost three years)

So i will let you know when and if I get CH relief once again...man these headaches are an effing nasty beast...

... almost forgot how bad they can get (mental block!)

I truly hope that all of you are finding a way to cope that works for you.

Paul

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Paul
"car crazy"

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: WHY don't we pay attention to this? Reply #399 - Oct 27^th, 2011 at 6:50pm Thanks for the update, my friend. I hope the new regimen will kick CH to the curb without causing other issues. You give us hope that something will be found to work for all of us sooner or later. Jerry
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