Lurker to First Post in Under One Month ( Hemochromatosis )

[crazycanuck]

Like the title says, been reading / lurking on EM for the past month after having done the same with a number of other men's health forums. Decided on EM for one simple reason, it appears to be moderated by some competent people and as a result, there aren't the normal "performance enhancing TRT" posts like on other sites. Anyhow, I digress.

My Story.....

A year ago (August 2015) I went to my family doctor and complained about chronic and extreme fatigue, low libido and general fog. I was coming off a very stressful period of time at work but just wasn't rebounding as I should. He ran blood work and I asked that he include Testosterone. Everything came back "normal" with a Total Test of 7.1 nmol/l (205ng/l) on a scale of 6.0 - 27. So NORMAL according to the lab range. The Dr recommended diet and weight loss along with exercise. I'm also a controlled hereditary hemochromatosis individual which, as I found out 9 months later, is a big piece to this.

Fast forward 6 months. Went for a work required physical to another Dr. Same symptoms despite losing 30 lbs, working out regularly and an extremely restrictive diet. I was also taking a tonne of "natural Test booster" but still felt like crap overall. Had the Dr pull Test level again and this time, I was a solid 13.1 mol/l or 378 ng/l. he said the level was within range and good. Nice to see that the natural supplements work to a degree.

Three months later, I began crashing hard so I went to my new family doctor (the last one pissed me off a number of times and I had enough of his ego). Same symptoms plus no sex drive, and more extreme fatigue and fog. She ordered Test and free test. TT came back at 5.7 nmol/l or 164 ng/l and Free Test came back at 161 mol/l on a range of 196-636. So results showed Low T. She sent me for all the other tests to work up a cause for it and prepared a referral to a Urologist for follow up.

I asked her if she would consider starting me on TRT due to a potential 6 month referral wait. She said yes but she needed to research it and check with a specialist before she prescribes it. She also wanted to check the other levels. About three days later, all other levels came back within range and not presenting as an issue. Based on my confirmed diagnosis of Hereditary Hemochromatosis (body produces high iron) I was diagnosed with secondary hypogonadism. She started me on the TD patch at 5mg daily.

The patch sucked and thankfully, I got a referral to a urologist within 2 weeks. He also said the patch sucks and started me on androgel 5 mg / day. I stated that I wanted to look at injections due to having a young child at home and the issues of transference bug me. He said he wasn't familiar with injection protocols and would send me to a colleague to get set up and then will monitor afterwards. Well, 2 weeks later I am sitting in his colleagues office (a Canadian pioneer of Sub q injections for TRT) and he' setting me up with a protocol:

100mg test c / week sub q
2000 iu (2ml) HCg 2x / week

So, I know from research that the 2000 iu is TOO much so I am playing stupid and only doing 200 iu (.2ml) E3D and I have broken the Test into 2 - 50mg shots per week.

Took the HCG this past Friday and the Test c yesterday. I feel great after one moth of patch, gel and now the shot. It was a huge boost yesterday.

I will have questions throughout as things get dialled in but for now, that me.

 

[Nelson Vergel]

Thanks Crazycanuck for your kind words about our site. I am glad you joined us.


From your well formatted and well described post, I can tell you are an educated man who is in search of best health.

This is a basic guide : ExcelMale.com Guide to Testosterone Replacement


Do you get therapeutic phlebotomies for your hemochromatosis ? What are your iron and ferritin?

Who is your doctor currently in Canada?

Have you had your TSH, free T3 and free T4 checked?

Are you planning to have more children?


Here are some good articles:

The other side of an iron problem: Hemochromatosis



The Iron Elephant – The Dangers of Iron Overload

 

[crazycanuck]

Nelson to provide a bit more history, I was diagnosed about 13 years ago with the hemochromatosis via DNA gene typing when my ferritin level skyrocketed to over 2300. So after 24 straight weeks of phlebotomies, i came down to a manageable 300 and I was placed on bi weekly withdrawals. fast forward 8 years and I was freed from the medical phlebotomies and allowed to donate blood. I am still monitored for secondary issues that could arise but for all intent and purpose, I am controlled. (well except for this nice little secondary Hypogonadism piece brought on my the HH that developed) The specialist likes to see me almost borderline anemic so I maintain a lower ferritin count with donations every 60 days or so. On the flip side, this will elevate some of the TRT concerns with increased red blood cells as well - two birds with one stone.

I went to M Greenspan to get the protocol set up - he did one of the first sub q studies back in 2005 I believe that the McGill / Saudi (at the Royal Victoria Hopsital in Montreal) team followed up on the next year. My primary urologist who will be looking after my care is a local guy where I live. I'm just glade that he didn't have an ego and was open to the referral for the injection protocols. I actually go back in three weeks for a follow up with revised labs to make sure I'm on track with TT and FT. He said he will wait for the three month mark to run a full panel, DHT, SHBG and E2, in order to let my system balance out and normalize with he introduction of the testosterone.

All other blood work was done by the family doctor during the diagnosis phase and like I said, everything (TSh, free T3 and T4) were perfect, including my prolactin levels too. I don't have a copy of those labs on hand otherwise I would post.

I have had reproductive issues for a long time and we went the route of adoption. The HCG is for the other benefits - testicular size (after 3 weeks, I was about 40% of the former size already), as well as maintain natural LH, FSH stimulation.

 

[Nelson Vergel]

Thanks, crazycanuck for your detailed reply.

I went to McGill for chemical engineering and I am glad doctors associated with it are progressive enough to go for tge subq + HCG route. Canadians are having a hard time accessing that protocol.

You said "So, I know from research that the 2000 iu is TOO much so I am playing stupid and only doing 200 iu (.2ml) E3D and I have broken the Test into 2 - 50mg shots per week."

I do not know if you want to have another kid besides the one you adopted. If you do, that low dose of HCG will not cut it. Lipshultz et al used 500 IU every other day plus TRT (gels or injections) in his study. There is still debate whether 500 Iu twice per week would be successful. Two members of ExcelMale could not get their sperm up to desired level at the twice per week dose.

Two Studies That Used HCG with Testosterone

 

[crazycanuck]

No other kids are planned and the hcg, aware for the hormonal support and testicular functioning aside from sperm health / fertility.

Dr Greenspan is out of McMasters and the McGill / Saudi team at the Royal Victoria Hospital in the sub q study used his from the previous year as a starting point for theirs. He didn't really hesitate about the Hcg prescription when I asked him about it either. I quess, unlike a lot of posters on both side of the border, I have lucked out on the TRT journey with a family doctor who was willing to seek a specialists advise, a primary urologist who was open to consulting on injection protocols and a secondary urologist who knows his stuff.

 

[Fireproof]

Nothing to add to the discussion at this point - but just wanted to welcome you to the forum!

Glad you're here.

 

[Re-Ride]

You absolutely have had good fortune in receiving progressive care. I second the compliments for a well written intro. Welcome to excelmale. The correct hCG dose is difficult to establish. Higher frequency i.e. EOD or E3rd day seems key. In the absence of ultra sensitive E2 serum assays you'll want to pay close attention to symptoms of high E2. 500 IU /day seems to be the current recommended max with many starting off much lower. 100 mg per week T seems bit low. Rather than numbers though your docs should be considering symptom relief. It's likely they intend to ramp you up slowly.