Met with a new doc (Hemochromatosis)

[buckeyes#1]

So I decided to drop my last doctor after he turned out to be a complete quack. I was sent to him by default because my previous Endo left the practice.

I had found my current doctor while looking a couple of years ago, but she has been out of network. At this point, I said screw it and decided to pay a little more out fo pocket. And boy I am glad I made that decision.

It was very refreshing to have a doctor sit down and listen to the whole TRT story from the beginning. She went through all of my blood results since I was first diagnosed in 2009. She made a discovery based on my symptoms and bllod work history. My Test Levels have never come up above 350, my Liver Enzymes have went in the crapper, along with Triglycerides and HDL. I have chronic fatigue, brain fog, joint pain, etc to go along with it. My Hemoglobin has always been high, but I have always donated blood to counteract this.

She thinks I have Hemochromatosis. Blood tests were taken on Monday and I should know for sure by early next week. I called my Dad to see if any doctor has ever mentioned anything to him since it is hereditary, but he was unsure (maybe just a carrier).

I know it is kind of weird, but I am excited to possibly have an answer to why I have felt this way for so long. I have done a whole bunch of researching the past two days and I know I can handle the phlebotomy that this will need. The alternative diet (no red meat or sushi) could prove difficult.

Another thing, she pretty much trashed all of the other doctors for allowing me to go through what I have and for them saying that my levels in the 300's were normal.

Once you find a doctor who cares and gets it, there is such a weight lifted off of you.


Anyone here been diagnosed with Hemochromatosis? Would like to hearyour stories.

Blood work will be posted soon as I get it.

[steroid.com 1]

Nice to hear you are under the right care.

Post your BW here and your Doc's recommended protocol here in this thread.

[j2048b]

i have a buddy who FINALLY got word that is what he had, and same symptoms tired all the time, and all sorts of crap, so he had to go plebotomy every week for a few months and now its once every month

i just wonder how it would effect someone on trt if they had to give that much blood all the time?

[buckeyes#1]

TRT usually increases your RBC count, so I have been donating blood regularly to try and keep the number down. Hypogonadism is a sypmtom of Hemochromatosis. The iron overload shuts down the testes. Testicular atrophy is also common with HH. I just assumed the atrophy was due to to my HRT, but seemd it might be due to both.

[FONZY007]

TRT usually increases your RBC count, so I have been donating blood regularly to try and keep the number down. Hypogonadism is a sypmtom of Hemochromatosis. The iron overload shuts down the testes. Testicular atrophy is also common with HH. I just assumed the atrophy was due to to my HRT, but seemd it might be due to both.

I too haven't seen numbers above 300 and at one time my iron was very high, I can't wait till I get my BW done. Might go see him this weekend

[buckeyes#1]

FONZY...I am taking 150mg of Test Cyp weekly and my scores will not increase. I have been on that dose for almost 3 years without any change

They have never checked my iron in BW before, but I do know that whenever I donate they usually check my iron beforehand. The Red Cross people always comment on how good (high) my iron is.

[HRTstudent]

You have taken peak measurements of 150mg Test?

Dr Mariano is pretty big on testing ferritin and iron. Seems more people are too low than too high though.

[tripperdogg]

I was also diagnosed with hemochromatosis about 8 years ago.My father has it also. His always required blood donations, but my Doc {same one} always said my numbers werent as high as my dads. i'm not great with giving blood so he said we would just monitor my levels. After about 5 years of staying the same,my hemotologist released my to the care of my G.P. and asked to send him my readings. Well I have all the same symptoms as the OP and have an appointment with my hemotologist in 2 weeks. I think he is going to tell me to donate blood to decrease my high iron numbers. I guess I better get used to giving blood. This forum is fantastic . Great info, thanks again guys. By the way i'm 48 and have a total test of 344 [labcorp]

[highpsi]

My father has hemochromatosis, I got checked 2 or 3 years ago and my iron level was fine they said. Maybe I should look further into it also.

[buckeyes#1]

You have taken peak measurements of 150mg Test?

Dr Mariano is pretty big on testing ferritin and iron. Seems more people are too low than too high though.

My last bloodwork was done midweek between my shots and my test was only 306.

[SEOINAGE]

have you not tried 200 mg? 150 keeps me low and feeling like trash. I'm tanked if I'm not at least 180 a week. I went a couple weeks at 240 and I felt even better than at 200. But sticking to 200 for now, although at 200 my libido is slightly under my wife's atm. 240 was spot on and great between us.

Either way I hope you get this figured out, but just wondering why you have stuck to 150 if it doesn't bring your test levels where they are needed. I'm glad you decided to pay the money for proper treatment. I had to go out of network and practically abandon all insurance support for my treatment.

[buckeyes#1]

My doctors up to this point have not upped my dose above 150mg. I did go from 100-->150mg back in 2010. My new doc says she wants to up my dose, but wants to figure out what is going on first. She says my numbers are too low.

[sirupate]

I'm in your AO....OP. If you think your doctor has a good handle on TRT, I wonder if you would be willing to drop me her name? I am always looking for a knowledgable TRT doc.

No hemachromatosis for me...pretty sure. I do donate blood regularly.

[buckeyes#1]

Dr. Elena Cristofides with Endocrinology Associates in Columbus...

A few things that I like about her...
Doesn't treat just based on labwork numbers
Knowledgable about TRT
Genuine sense of caring about the patients well being

[SEOINAGE]

My doctors up to this point have not upped my dose above 150mg. I did go from 100-->150mg back in 2010. My new doc says she wants to up my dose, but wants to figure out what is going on first. She says my numbers are too low.

That's good to hear on both parts of upping dose and looking at what's going on.

[HRTstudent]

Dr. Elena Cristofides with Endocrinology Associates in Columbus...

A few things that I like about her...
Doesn't treat just based on labwork numbers
Knowledgable about TRT
Genuine sense of caring about the patients well being

Those are some of the most important attributes of a good HRT doc!