Hey Andy,
Thanks a lot for taking time to reply so thoroughly. I was really hoping you were going to tell me you'd figured out a way to solve both issues, without sacrificing one for another!
We have been very fortunate to not be charged for therapeutic phlebotomies. Where we live, your doctor just has to fill out the Red Cross form for therapeutic phlebotomies and they do them, free of charge, as often as necessary. The only thing required is the doctor's order, and an appointment. I do wish we had a place where we could get "blood tested for next to nothing as often as we want." Lucky you! I don't have any idea if my husband's hgb ever gets to 20 because it is not tested often enough. So far, highest accurate test has been 18.5 -- I say accurate because when he's doing regular phlebotomies, it goes lower and I am not counting that as "accurate."
My husband's health history is rather complicated and I won't get into it here, but he does take supplements to keep the blood flowing smoothly, even if it IS too thick... omega-3, GLA, gingko biloba and nattokinase/serrapeptase combo, alternating with the more expensive lumbrokinase.
I agree that less than 45 hit is a bit aggressive. I have read the study you are probably referring to, and their conclusions were drawn from the increased thrombotic evens in those with higher hcts. I "get it" but cyclists are permitted to have hct levels of 50 in competition and athletes train at high altitudes to increase their blood's oxygen carrying capability.
I've read tons of studies, medical abstracts, etc., trying to understand the exact mechanism causing polycythemia in some men and not others. I've read about hepcidin and polycythemia occurring more in older men...so far, I have found that no one knows the exact mechanism of the cause. We know that the body produces more red blood cells in response to low oxygen levels. The question is WHY does testosterone supplementation, in some men, signal that oxygen is low and tell the kidneys to respond?
I am not at all convinced that the answer is to let ferritin remain low, but I agree that there doesn't seem to be a lot of other clear answers at this point. Interestingly, itching is a symptom of polycythemia, but guess what? It's also a symptom of anemia. In my husband's case, he was itching incessantly for awhile so started getting phlebotomies up to once a month. The itching didn't improve, and if anything, it got worse. We later learned that anemia can cause itching as well and I believe this was more likely what was going on with him.
I contacted a well-known autoimmune doctor (because of my husband's history) to ask his advice, which we have followed, but it's not been "enough", unfortunately. Even increasing the iron to once daily instead of every other day, decreasing testosterone and not having a phlebotomy for almost a year only got his ferritin up to 26. And, my husband's testosterone levels have to be far too low in order for hgb and hct to be within "normal range."
This was the immune disorder doctor's advice:
When polycythemia (an elevated blood count or hematocrit is seen from testosterone, it is usually not because of sensitivity to the testosterone but because the testosterone level is too high. The problem with pellets is that, even though they can be an excellent therapy, once they are in they cannot be removed and will be active for 2 to 4 months.
On the other hand, I would not treat the elevated blood count by leaving a man testosterone deficient. Nor would I leave him iron deficient.
If indeed the polycythemia is coming from the testosterone treatment and not from another cause, the simplest approach is to switch to a topical testosterone and use a lower dose once his hematocrit (blood count) drops under 48. I then give iron (every other day) until the ferritin level is at least 60. I aim for a testosterone level of about 600 to 700. If the polycythemia is coming from a different cause, then I might keep the testosterone level a bit lower at about 500.
But this is a general approach, and would need to be tailored by your physician to your specific case.
Regarding the balding, I agree with all you said, but 1) the thyroid should not get sluggish on it's own, if it's getting what it needs, iron being one of many nutrients imperative for the thyroid and 2) I think many cases of male pattern baldness are attributed solely to DHT when other factors may also be at play. Opinions on the importance of ferritin and optional levels vary but the lowest optimal recommendation I've seen is 40-60, higher for those with thyroid disease and the Cleveland Clinic says for hair loss, they aim for 70. Hair loss of all kinds can be (I'm not saying it always is) related to iron deficiency and hair loss is common with thyroid disease -- how it's all related is too complex to get into, but one thing ties into another.
My husband does take DHT blocking supplements, but with inadequate iron, I don't know that we will ever know how much of his hair loss is male pattern baldness or something else. He does take GLA in the form of evening primrose oil, since it is helpful for the thyroid, thins the blood and also helps block the DHT conversion, though I understand what you are saying about not wanting to cause side effects from blocking DHT...it's a matter of balance that seems incredibly challenging to figure out.
Thanks for answering regarding the dehydration. I know it contributes but I was trying to find a definitive answer as to HOW MUCH, exactly. I found an article where a doctor said 5-10% at most, so with my husbands hgb at 18.5, I could conceivably lower that a point and hct at 54, perhaps lower it 2 points or so, down to 52, if he was dehydrated at the time of the collection. His immune system disorder predisposes him to dehydration and he has to drink more water than the average person, so I would not be surprised if it contributed somewhat, though it would not be the entire issue.
I guess we will continue on as we are for now, as I don't know what else to do. His testosterone is quite a bit lower using the cream than the pellets, but it also saves an extra trip to the doctor and soreness and expense. He had injections for awhile but we really do prefer to use bio-identical hormones, being that this appears to be something that is going to have to be long-term. We are just not comfortable with using "regular" hormones for many years. He's only 46 now but has needed trt since his 20s, because of his medical issues.
Your reply did offer me hope, mainly because you took the time to share your experience and knowledge, with compassion. I know the effort required to do that and not many people will, so thank you very much. I wish the "solution" was more clear, but even the doctors don't have one yet, so we will just keep learning and doing all we can.
One more thing, I am not able to post links here so I didn't share a bunch of what I'd read, but I'm assuming you've tried eating a grapefruit daily? If not, you can easily find that study by doing a search, "lower hematocrit with grapefruit." A lot of medicines interact with grapefruit and so it's not a solution for anyone in that situation but if you are not taking any medicines that interact, I sure would try adding a whole red grapefruit to your daily regimen!
Thanks again for such a kind and compassionate sharing of your knowledge.
I wish it had! He is using some DHT blocker supplements, but no medicines. His doctor originally prescribed one but he had no symptoms to justify it's continuance, which was fine with him, as he hates taking medicine if it's not necessary.
