Any Members with Factor V (5) Leiden ?

[BFBeach]

Hello,

I am a new member and had the pleasure of being treated with 1 injection of Test Cyp (my Test Level was 305). I thought I had found a new supplement. It had addressed all of my concerns in one injection.
About 8 hrs after the first injection I thought I could feel everything starting to focus again. Around 4am I woke up and was literally pumped like I had just worked out, It was AWESOME!!!
In the next fews days the following occurred:
The sleepless nights were gone, I slept like a baby for the first time in years.
The Morning Fog was gone.
My Vision was noticeably better, not perfect but better.
My Energy levels were great, all day long.
Mental Sharpness was returning, I had always been able to do long complicated math in my head, it was a joke in my family, that I was faster than a calculator but in the last few years I have found my self having to write things down to solve them.
My Mood was much better, very upbeat and energetic.
My Knees stopped hurting. (Sport injuries in the past)
FWIW, Libido was never an issue or hadn't become one yet.
But Everything was Great!!!!!! so I thought.

Then I talked to my GP/Endo doctor about the injections. I had the first injection done at a HRT clinic.
She immediately called in lab work for me to be tested for Factor V (5) Leiden because my mother had been diagnosed with it.

Well, sure enough I came back with it too, the heterozygous type, 1 Gene type vs the homozygous type which is 2 Genes.

She advised me to immediately stop with the injections based on a study done by Charles Glueck, M.D., Medical Director of the Cholesterol and Metabolism Center at The Jewish Hospital – Mercy Health, in Cincinnati, Ohio. I tried to post a link to the study but I don't have enough post to do so but you can Google it.

Basically, they were seeing an increase in Blood Clots and started looking into it. Come to find out it was tied to HRT and that 5 out of 6 Males with Factor V developed some kind of clot within 17 mos, one as quick as 1 month, mostly Pulmonary Emboli. I plan on writing the doctor to see what other information he can give me but he was asked if an aspirin would help and he said No, not in this case.

Anyway, here I am thinking I had found the Answer only now to be disappointed. She won't consider giving me a blood thinner because of the additional risk.

Just thought I would post this here to both inform people about the disorder and or to see if anyone else here is Factor V and how they are managing their treatment.

Great Site, BTW!!!

[3day]

No Factor V (5) Leiden here but very good info thanks for sharing.

[kelkel]

So wouldn't controlling your estrogen help to mitigate the risk?
Interesting topic and welcome to the forum.

[BFBeach]

Thanks for the Welcome,

That's what I thought too, well, just control the estrogen and then I found this…

Our specific aim is to describe the development of thrombotic osteonecrosis of the jaws after testosterone-anastrozole therapy in a 55-year-old white man subsequently found to have previously undiagnosed factor V Leiden heterozygosity. Before the diagnosis of V Leiden heterozygosity, he was given testosterone gel, 50 mg/day, and on testosterone, serum testosterone (963 ng/dl) and estradiol were high (50 pg/ml). Anastrozole was started, and testosterone was continued. Six months later, osteonecrosis of the jaws was diagnosed. Exogenous testosterone is aromatized to estradiol and estradiol-induced thrombophilia, when superimposed on underlying familial thrombophilia, as in this case, may lead to thrombosis and osteonecrosis. We recommend that before giving testosterone, at a minimum, screening for the factor V Leiden and G20210A mutations, and factor VIII and XI activity be carried out, to avoid unanticipated thrombosis.

Osteonecrosis being a disruption to the blood supply to the bone or joint, in another case, a Factor V and or High VIII man who received their shots in their Gluts developed it in their hip.

Like I said, I was truly impressed by my one injection and went into it as a skeptic but after one I was made a true believer.
Obviously this is what my body is missing and there has to be a way to work around it. Or I hope so anyway.

Any and all information welcome here… that's why I came here hoping to find someone else who is Factor V and receiving HRT.

[lancerevo]

Factor V leidon is a mutation in the blood clotting cascade - has no relation to estrogen - two completely different organ systems.

[BFBeach]

Women who are Factor V Leiden Positive are not allowed to take Birth Control due to the Estrogen, the risk of clots to these women is 100 fold. It's the estrogen that seems to trigger the clots, reaffirmed in the above reference

Exogenous testosterone is aromatized to estradiol and estradiol-induced thrombophilia

Anastrozole is used in males to reduce estrogen levels.

[kelkel]

Factor V leidon is a mutation in the blood clotting cascade - has no relation to estrogen - two completely different organ systems.

Yes, they are two organ systems but clotting factors can be increased dramatically by estrogen.

[lancerevo]

I am not familiar with the mechanism increased estrogen causes clots. I stand corrected then if that's the cause.

[jimmyinkedup]

I dont think e2 management would address the entire issue. Id tend to suspect the increased Hema would also be a contributing factor and e2 management would do nothing to address that.

[kelkel]

I am not familiar with the mechanism increased estrogen causes clots. I stand corrected then if that's the cause.

Not correcting at all, just contributing to an interesting and rarely discussed topic! Good stuff lance.

I dont think e2 management would address the entire issue.

Agree. Which doesn't surprise me considering the source.

[BFBeach]

I dont think e2 management would address the entire issue. Id tend to suspect the increased Hema would also be a contributing factor and e2 management would do nothing to address that.

So what are you thinking, Donate and manage Estrogen? Just trying to follow your train of thought, not questioning content.

Like I said, I am new, and everything I have posted here was forwarded to me or I found online. Just trying to follow the train of thought so that I can follow along…

[BFBeach]

So, just thought I would share the response that I received from Dr. Glueck who did the study that I referred to. I wrote him a couple of days ago and he actually responded, which is pretty impressive.

In V Leiden heterozygotes, the risk of clotting is increased about 10 fold over the general public, up to 1/100 persons per lifetime. In those with V Leiden heterozygosity and on testosterone, the risk of clotting is increased to an estimated 100 fold over the general public, up to 1 in 10 persons. Taking aspirin and fish oil changes nothing in your clotting risk, nor (apparently) does taking T off and on, or using arimidex, an aromatase inhibitor. I would surely not take testosterone in your situation, as suggested by your endocrinologist, correctly. CJ Glueck MD

Thoughts?

[kelkel]

Wow. Awesome response!

[jimmyinkedup]

So I think you have your answer. The ony question I would have were I you is that are gels a possibility ir are the same risks associated with their use. I would Imagine the same risks are but it may be worth asking.

[BFBeach]

One of the original studies were done with the gels, so I guess my HRT voyage is done for now until new information comes out. F*CKING SUCKS!!!

My daughter who is a ER PA sends me an email every couple of days with people she has treated with Strokes and PE's from blood clotting issues, she is really concerned with me using T.

1 in 10 are not bad odds but I don't want to be a vegetable for the rest of my life either… C'est la Vie!!!

Thanks for the help guys….

[jimmyinkedup]

One of the original studies were done with the gels, so I guess my HRT voyage is done for now until new information comes out. F*CKING SUCKS!!!

My daughter who is a ER PA sends me an email every couple of days with people she has treated with Strokes and PE's from blood clotting issues, she is really concerned with me using T.

1 in 10 are not bad odds but I don't want to be a vegetable for the rest of my life either… C'est la Vie!!!

Thanks for the help guys….

Yea - not worth it man. Sorry. If I was you Id be like yeah right it figures - those odds and I am one that is effected. Sucks.

[almostgone]

I pulled my records from the Oncologist/hematologist that did my blood testing when I was in such bad shape in '07. I have the heterozygous Factor V Leiden....R506Q mutation.
Don't know of this info will help you, but here's a link to some.of the info they referenced when I spoke w/ my cardiologist this week.

Circulation

[almostgone]

So, just thought I would share the response that I received from Dr. Glueck who did the study that I referred to. I wrote him a couple of days ago and he actually responded, which is pretty impressive.



Thoughts?

It kind of throws me that he says taking T "off and on" (I'm guessing he is referring to T replacement?) does nothing to change your clotting risk, yet he wouldn't take testosterone . I must be misunderstanding his response.
Anyway, please post up any new info/studies you may encounter.

[BFBeach]

I pulled my records from the Oncologist/hematologist that did my blood testing when I was in such bad shape in '07. I have the heterozygous Factor V Leiden....R506Q mutation.
Don't know of this info will help you, but here's a link to some.of the info they referenced when I spoke w/ my cardiologist this week.

So, are you on T replacement now? If so, for how long have you been on it?

It kind of throws me that he says taking T "off and on" (I'm guessing he is referring to T replacement?) does nothing to change your clotting risk, yet he wouldn't take testosterone

Yes, In my email to him I asked if a "1 month on 1 month off" program may work, allowing the body to cleanse the T if you will. It's the build up of Estrogen that seems to be the issue, even though estrogen inhibitors tend not to work in his studies. I took his response to mean that it would not help by taking a month off, I would still be at risk for clots.
In the report that he sent me, I can't find where they tried this method but my thinking would be that taking it on and off would not be using the full benefits of therapy thus negating the need for it in the first place but I don't know.

It can be different kinds of clots, Clots than can be deep in veins, clots that can arise in the bones itself which causes bone death such in hips and jaws, one patient got a clot in the vessels supplying blood to his retinal artery and he lost vision in one eye. Then you have deep vein clots that travel to the lung (PE) or brain (Stroke).
My daughter treated a Homozygous V (2 gene) patient last week who had stopped taking her blood thinners and had a Bi-lateral Stroke and is now a vegetable. The woman had 3 kids.

Dr. Glueck attached a 6 page PDF concerning Clots and T and their results. This study included Estrogen Inhibitors, Blood Thinners, (Coumadin) and T and their finding based on test subjects.
The file is too big, 416KB to be uploaded here or I would have attached it. If anyone would like a copy PM me and I will send it via email. Or you can buy a copy at ScienceDirect dot com. ($36)
The article under Metabolism and is titled "Testosterone therapy , thrombosis, thrombophilia, cardiovascular events" by Dr's Glueck and Wang.

[almostgone]

Yes, BFB...I am on TRT, albeit a very poor TRT. Started last January/ early Feb. My coagulopathy was diagnosed after my heart was damaged by a virus (coxsackie B). Really screwed up my heart, outlook was pretty bad for awhile. Eventually had a biventrucular pacemaker installed, and developed a clot not long after. Started having weird bruising and peripheral swelling. Ultrasound showed problems. Was placed on Coumadin but could never hit a therapeutic level. Cardiologist sent me to a hematologist/ oncologist for a buttload of blood tests That's when the gene mutation was identified. At this time, I managed to acquire staph infections/bacteremia and the pacer had to be removed to clear my body of the staph. I'll leave out a lot of details that don't pertain to this post.
Cardiologist has mentioned installing a Greenfield device, but after the debacle with staph infections and the pacemaker about put me out of commission permanently, I'm very hesitant.
Please don't let my use of TRT encourage you to continue. It's a personal choice that I discussed with my wife and health care providers. I was hesitant to post this, but I'm hoping it will at least let you know that you aren't alone.
Best of luck!

[almostgone]

...and I can understand that the 1 month on, 1 month off T would be ineffective for anything. I believe it would make our situation worse....especially if E2 wasn't kept in balance, which would almost be impossible.

[almostgone]

So, are you on T replacement now? If so, for how long have you been on it?



Yes, In my email to him I asked if a "1 month on 1 month off" program may work, allowing the body to cleanse the T if you will. It's the build up of Estrogen that seems to be the issue, even though estrogen inhibitors tend not to work in his studies. I took his response to mean that it would not help by taking a month off, I would still be at risk for clots.
In the report that he sent me, I can't find where they tried this method but my thinking would be that taking it on and off would not be using the full benefits of therapy thus negating the need for it in the first place but I don't know.

It can be different kinds of clots, Clots than can be deep in veins, clots that can arise in the bones itself which causes bone death such in hips and jaws, one patient got a clot in the vessels supplying blood to his retinal artery and he lost vision in one eye. Then you have deep vein clots that travel to the lung (PE) or brain (Stroke).
My daughter treated a Homozygous V (2 gene) patient last week who had stopped taking her blood thinners and had a Bi-lateral Stroke and is now a vegetable. The woman had 3 kids.

Dr. Glueck attached a 6 page PDF concerning Clots and T and their results. This study included Estrogen Inhibitors, Blood Thinners, (Coumadin) and T and their finding based on test subjects.
The file is too big, 416KB to be uploaded here or I would have attached it. If anyone would like a copy PM me and I will send it via email. Or you can buy a copy at ScienceDirect dot com. ($36)
The article under Metabolism and is titled "Testosterone therapy, thrombosis, thrombophilia, cardiovascular events" by Dr's Glueck and Wang.

The only blood thinner that got my PT/INR into range was Arixtra, a low MW heparin, but the oncologist, cardiologist, and PCP all agree that the risks associated with long term use was a greater health risk. Coumadin and the like have little to no effect on me.

[BFBeach]

AlmostGone,
I have decided to stop the TRT for now even though it seems to be what my body is missing. It checked so many boxes that it is just crazy that I can't continue but my daughter and doctors have persuaded me not to for now. I may a do cycle here and there just for sh*ts and giggles but no long term cycles.

Good Luck with your voyage, you have a lot going on there and I wish you the best. Hang in there and Chin up but it sounds like you have a game plan and are moving forward which is about all we can do anymore.

If I come across any more information I will come back and post it here.

I wish someone would develop a drug to stimulate the body to naturally produce more T, maybe that is down the road who knows.

[almostgone]

Perhaps an attempt @ a HCG restart??? I definitely respect your decision and know how much of a PITA dealing with this condition is.
I'm guessing that as TRT gains more widespread acceptance in the medical community, there will be others encountering this condition. Unfortunately, most never know they have it until they or a family member has medical issues and it is then noticed.
Hopefully, the key lies in E2/ estradiol management so that increased chance of clotting issues for Factor V's can be mitigated.
Best of luck and please share information/ details as you deal with this.

[almostgone]

AlmostGone,
I have decided to stop the TRT for now even though it seems to be what my body is missing. It checked so many boxes that it is just crazy that I can't continue but my daughter and doctors have persuaded me not to for now. I may a do cycle here and there just for sh*ts and giggles but no long term cycles.

Good Luck with your voyage, you have a lot going on there and I wish you the best. Hang in there and Chin up but it sounds like you have a game plan and are moving forward which is about all we can do anymore.

If I come across any more information I will come back and post it here.

I wish someone would develop a drug to stimulate the body to naturally produce more T, maybe that is down the road who knows.

Honestly, I feel a full blown cycle would carry higher risks than the TRT.

[almostgone]

Just wondering, BFB. Has your hematocrit generally run high? Mine always has...even before TRT. Packed cell volume was @ 52% prior to TRT.

[almostgone]

Fortunately, we can donate blood which helps with the hematocrit.

Factor V Leiden Lifestyle and home remedies - Diseases and Conditions - Mayo Clinic

[BFBeach]

I mispoke, or was unclear, I may go get one shot of T every now and then.
It was amazing, I am currently concentrating on fitness, working out, dropped 30lbs over the last year and really trying to stop smoking. I think when I get closer to being where I want to be, I may do another T shot or two to finish it out.

Clots have never been an issue for me, knock on wood, it was my Mom, who had an issue after an injury that brought all of this to light.

I am a Chef by profession and cut myself or get cuts I should say pretty regularly and always bleed more than others but I have taken aspirin and fish oils for years so I attributed it to that.



I'm sorry but until recently I have never checked my Hemocrit. At my last physical in the middle of July, my Hemocrit was at 39.5%. This was before TRT.

I too donate blood just to donate. I guess I should more often >1x/yr as I always get a "rush", burst of energy, from donating. Wonder if this has something to do with Factor V or Hemocrit?

I Wonder if HGH would help us? Not sure what all it does, need to research it a bit more.

What I find strange is that as young men, our T levels are higher, and clots are usually not an issue for Factor V guys. Its later in life with lower T that men tend to clot more. Yet, adding T can cause clots too.
It's just a weird puzzle to me.

Someone just needs to find something that would stimulate our own bodies to produce more T.

[almostgone]

I mispoke, or was unclear, I may go get one shot of T every now and then.
It was amazing, I am currently concentrating on fitness, working out, dropped 30lbs over the last year and really trying to stop smoking. I think when I get closer to being where I want to be, I may do another T shot or two to finish it out.

Clots have never been an issue for me, knock on wood, it was my Mom, who had an issue after an injury that brought all of this to light.

I am a Chef by profession and cut myself or get cuts I should say pretty regularly and always bleed more than others but I have taken aspirin and fish oils for years so I attributed it to that.



I'm sorry but until recently I have never checked my Hemocrit. At my last physical in the middle of July, my Hemocrit was at 39.5%. This was before TRT.

I too donate blood just to donate. I guess I should more often >1x/yr as I always get a "rush", burst of energy, from donating. Wonder if this has something to do with Factor V or Hemocrit?

I Wonder if HGH would help us? Not sure what all it does, need to research it a bit more.

What I find strange is that as young men, our T levels are higher, and clots are usually not an issue for Factor V guys. Its later in life with lower T that men tend to clot more. Yet, adding T can cause clots too.
It's just a weird puzzle to me.

Someone just needs to find something that would stimulate our own bodies to produce more T.

That is the million dollar question. Definitely keep on eye on your hematocrit if you decide to continue treatment. Keeping the hematocrit down may be a little extra insurance in our case and it helps someone else out down the line. A win-win situation. I try to get by the hospital to donate every 2 months, since my hematocrit was so high prior to TRT.
Best of luck with whichever route you choose to go and keep us posted. Surely, we aren't the only 2 guys that have/will encounter this condition.

[j2048b]

Ive actually got a script from good ol doc G! He did an interview over on nelsens website exale male and is offering his services to all who have clots, had clots etc.... If any of u are interested shoot him over an email and he will respond within a few days and send over a pdf script u can print out and take in to get everything checked.... The awesome thing about it is that he states that if ur insurance wont cover the tests his research grant can pick up the tab!!

Sorry to hear about ur situation man! Im gonna get everything done that doc sent me this week i hope, just to be safe and see if i also fall under any of this clotting issues...

Stay strong and motivated and i i wonder if straight hcg monotherapy might be an alternative???

[j2048b]

I tried to send u a pm BF id like a copy of that pdf if i can?

[email protected]

Id appreciate it man!

[BFBeach]

That is the million dollar question. Definitely keep on eye on your hematocrit if you decide to continue treatment. Keeping the hematocrit down may be a little extra insurance in our case and it helps someone else out down the line. A win-win situation. I try to get by the hospital to donate every 2 months, since my hematocrit was so high prior to TRT.
Best of luck with whichever route you choose to go and keep us posted. Surely, we aren't the only 2 guys that have/will encounter this condition.

Thanks for the advice, Surely with this new information and continued research, someone will come up with something. Like you said, we can't be the only ones with it. I just hope people get tested for the Blood Clotting disorders before starting so that they truly know the risk. Good Luck to you and your journey as well, we will get there one day!

I tried to send u a pm BF id like a copy of that pdf if i can?

File Sent!

[almostgone]

Definitely, BFB! Who knows, may login one day and see the answer here in this forum. It's a great resource containing current and relevant material.

[almostgone]

Just posting an update for BFBeach since he doesn't have PM access yet. My Dr. has improved my TRT. I'll continue to post any new info/updates from time to time to keep you current with my situation.

[BFBeach]

Just wondering how your treatment is going, Almostgone? Any updates or issues?

[almostgone]

Just wondering how your treatment is going, Almostgone? Any updates or issues?

Everything seems to be clicking along pretty good. Think my next labs are Dec.1. Sorry for the delayed response, BF. I completely overlooked your post.

[BFBeach]

Awesome Almostgone, keep it going!!! I am almost ready for another go at it. Post your results if you would...

[almostgone]

Will do. I'm on a pretty crappy TRT compared to most of the guys here ( every 2 weeks). The Dr. started me off very low (monthly) because of the past cardiac issues and blood disorder, but after seeing me drop down to 174 in between injections she increased the frequency, and she said we'd evaluate again @ next labs. Possibly she will increase the frequency again dependent on my levels, HCT, my next stress echo, and how I'm feeling in general.
I'll post up my next labs or PM them to you if you're up to 50 posts by then.
Post up your labs/results/thoughts as you get settled into your TRT.
Best of luck to you and don't forget to keep an eye on your HCT/packed cell volume.

[BFBeach]

Just thought I would post an update for anyone else who has Factor V Leiden:
2 mos ago I begin a low dose TRT---
.5ml of Test Cyp 1x week.
Starting T Level at 433 or 5.8pg/ml
RBC - 4.68
Hematocrit - 39.5

After 2 mos, my lab results today showed my T Level to be 907 or 24.1pg/ml
RBC - 4.68
Hematocrit - 39.3
Estradiol - 23.6 pg/ml

I can't find a beginning Estradiol level so I have no way to compare. Doctor wants to watch this and says if it goes any higher he will add a estrogen reducer.

I tested 2 days after injection so my doctor feels my real T level is closer to 800 but all in all I feel pretty good.
Very little shrinkage, no puffiness, added creatine to my workout and definitely see a better pump now.

I inject on Sunday and do feel a little like it is tapering off around Thursday so doctor says we may split my dose in two and inject 2x per week.

Factor V is a clotting issue as in we are prone to clot easier, I only have the single gene version as opposed to the double gene which more prone to clot.
I take fish oils daily and an aspirin and have for years after being diagnosed.

All in all I am pretty happy, was really hoping to be able to inject .5ml 2x/week but I am at 800-900 now so no need.
Just wanted to post an update to my TRT Journey

[Moonjumper]

I see you have started taking T shots anyhow so my question might be irrelevant. Just in case though, have you considered Clomid? Seems to get mixed reviews and results but in case you aren't familiar with the drug, it stimulates the pituitary to produce/release LH and FSH. LH is the same thing HCG mimics and causes the testicles to start back on their natural production. The only concern I would have is it also (as I understand it) will cause an increase of estrogen in a males system however it is supposed to not allow it to bond. Best of luck regardless.