balancing low ferritin levels and frequent donation.

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andyn2b8s

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Nelson, I'd love to hear your opinion on balancing low ferritin levels and frequent donation. I have read all the posts on this site that seemed to relate best to my question.

I've been on trt for almost 3 years. I inject twice a week to keep the spikes lower.


I've been giving blood every 8 weeks (max allowed by United Blood Services) for that whole time. My ferritin level last I checked was low even though I eat lots of spinach and take an iron pill every day. Yet my hgb is still high (19.6 today). So I increased my iron pill to twice a day and I'm thinking I need to increase my donations to every 2-4 weeks. I'll draw out a pint every week for the next few weeks to get it down in a reasonable amount of time. I'll be checking my hgb often to see where I'm at. And yes I take baby aspirin and 3g fish oil every day to avoid major problems.


It seems like people like to advise avoiding iron to keep hgb under control. But unfortunately, that also creates a serum ferritin deficiency in people with high erythropoesis. Obviously iron is good for more than just hemoglobin. So instead, I do the opposite and supplement iron to keep my ferritin normal while using phlebotomy to lower hgb/hct.


Again, I'd love to hear your opinion on this.


Thanks
 
Defy Medical TRT clinic doctor
I would not donate that frequently. What is your hematocrit now? How long have you been on TRT? How many donations and how frequently since the start?

You should also take Vitamin C since it improves iron absorption. Watch your liver enzymes while on iron.
 
Yes, it takes the right amount of "balance" of iron supplement, usually a good elemental iron supplement with LOTS of Vitamin C, as noted by Nelson.

You can end up boning your thyroid hormone productivity when it (and iron serum) gets too low. Even on my end, I have HIGH ferritin due to the hemo-gene mutation, so donating is the only way to really control it. However, even mine got too low just by donating at the normal interval. Look at different elemental iron supplements, they're not all equal.
 
Nelson Vergel said:
I would not donate that frequently. What is your hematocrit now? How long have you been on TRT? How many donations and how frequently since the start?

You should also take Vitamin C since it improves iron absorption. Watch your liver enzymes while on iron.
Click to expand...

Nelson, forgive me for sounding crass but I don't get why you are always harping on people with high hematocrit not to give blood frequently. Seems to me they should be and taking an iron supplement to combat the low iron concerns.
 
Thank you for the replies everyone.

To answer your questions Nelson, my last hbg was 19.6. They only measure hgb at UBS so I figure my hematocrit is about 3 times that (as a general rule). I have had hgb levels in the 19's a lot lately.

I've been on trt for almost 3 years now, and I had been donating power red every 4 months, but just switched to whole blood this last time so that I can donate twice as frequently. As it was, I had been blood letting a pint on my own in between those q4 month power red donations, and still not keeping up with my rising hgb.

And so far my LFT's have always been good.

Like Alexis posted, I don't think I understand the caution on donating frequently so long you are able to keep iron stores high enough. It seems to be the only way to obtain a reasonable hct and a reasonable serum ferritin level for someone like me, while on trt. Iron is used by every mitochondria in the body, so it's not something I want to be low on.

And Chris, I will make sure I'm taking a quality iron supplement along with some vit c. I think I'm going to try the grapefruit thing Nelson recently posted a study about.

Thanks again guys
 
My husband has the exact same issue

andyn2b8s said:
Thank you for the replies everyone.

To answer your questions Nelson, my last hbg was 19.6. They only measure hgb at UBS so I figure my hematocrit is about 3 times that (as a general rule). I have had hgb levels in the 19's a lot lately.

I've been on trt for almost 3 years now, and I had been donating power red every 4 months, but just switched to whole blood this last time so that I can donate twice as frequently. As it was, I had been blood letting a pint on my own in between those q4 month power red donations, and still not keeping up with my rising hgb.

And so far my LFT's have always been good.

Like Alexis posted, I don't think I understand the caution on donating frequently so long you are able to keep iron stores high enough. It seems to be the only way to obtain a reasonable hct and a reasonable serum ferritin level for someone like me, while on trt. Iron is used by every mitochondria in the body, so it's not something I want to be low on.

And Chris, I will make sure I'm taking a quality iron supplement along with some vit c. I think I'm going to try the grapefruit thing Nelson recently posted a study about.

Thanks again guys
Click to expand...

HOW ARE THINGS GOING FOR YOU? My husband has the exact same problem. Husband has been on TRT for years but about three years ago, developed the high RBCs, hgb and hct, which had never been a problem before. Switching to compounded cream didn't fix it, as we'd hoped. He has not had a therapeutic phlebotomy in almost a year but latest bloodwork indicates another is needed.

I am curious how high you all think numbers can get before someone is in stroke zone? From what I've read, 54 (his current HCT) is not ideal but I wouldn't think it was "dangerous" yet, though his doctor does want him to do a phlebotomy at these numbers. I've read that over 60 on HCT would be "dangerous."

Regarding ferritin, most doctors do not even get concerned about ferritin until it goes VERY VERY LOW. A couple of years ago, we asked for an iron panel. Ferritin was 15 and yet they said it was still nothing to be concerned about. Meanwhile, his thyroid is being affected and he's losing hair.

Labs several months ago showed that ferritin had only risen to 26, despite supplementing iron daily, eating more red meat and no phlebotomies. However, his blood iron is "great" because there are too many red blood cells!

I am concerned about how to maintain ferritin long-term, if this is the way things continue. His thyroid and other hormones need the iron stores to come up!

Also, does anyone know how to tell if the RBCs are truly TOO MANY versus MORE CONCENTRATED? I know dehydration can cause higher numbers, but how much higher? Could simple dehydration cause HGB of 18.5 and HCT of 54?

TRT dose is as low as it can go and still be of some benefit to him - numbers are NOT high in the T department, even with TRT. Interestingly, he used to have MUCH HIGHER T numbers and yet did not have this problem with the elevated RBCs, HGB and HCT. I have read myself silly, trying to find the cause of this -- why he didn't have a problem with it for years at higher TRT, but now he does. I know it tends to be more common as a man ages, but WHY?

Any input would be appreciated, thanks.
 
Hi concerned wife. I think I can offer some advice from my own experience. Plus I have a masters in a clinical medicine field, so I feel like I am able to pick apart the research pretty well..IMHO.

The good news is that the FDA is currently considering waiving the phlebotomy fee for people who need to donate blood more frequently. Currently there is a $100 charge (along with a required prescription) to donate more often than every 6 weeks for whole blood. Seems like common sense to me to not charge people for donating an invaluable resource no matter how frequent, but then again, the fda isn't very common sense oriented at times. I personally have no qualms over discarding my own blood at home at whatever frequency I deem necessary. We now have Theranos in our area where I can get my blood tested for next to nothing as often as I want. So I am able to keep a close eye on things. Certainly your husband should be donating at least as often as the donation centers will allow, and then see how his hgb/hct responds to that.

As far as what number is safe, that depends on a number of things like his baseline circulatory system health and if he takes anything like aspirin or high dose omega 3 (which he should be doing both for many reasons). Those supplements will keep his blood from aggregating if or when the hgb/hct gets too high. I've read that hematologists want to keep hct <45 at all times in polycythemics, which to me seems a bit aggressive. I must say, when my hgb tested at 20.6 back in March, I was very concerned. I would say it's best to keep hgb below 17 at all times. I try to keep it between 15 and 17. PS- HCT is usually 3 x hgb. I know I switch back and forth between the two a lot.

I totally agree with you about the lack of concern over serum ferritin levels, and for guys that have aggressive erythropoesis with trt, it seems we don't have much choice other than to let the ferritin run low. I have seen my own hgb level explode when I tried to supplement more iron in order to get my ferritin levels any higher than at the bottom of the low range. So again, safer to run low ferritin levels than risk a high hgb for guys like us. The docs probably say it's nothing to be concerned about only because there's nothing they can safely do about it for guys on trt getting phlebotomies and it truly isn't life threatening or perhaps even life altering.

I don't know enough about the correlation with the thyroid, but I will say this: As people age, their thyroid tends to get sluggish on it's own. And men predisposed to male pattern baldness with get more bald with age. Trt will increase the rate of balding and I'm quite certain it has nothing to do with ferritin levels. Testosterone converts to DHT in the scalp and DHT is the compound that speeds up the balding. DHT is also a very potent anabolic steroid in itself, and selectively blocking it has it's own set of side effects like a decrease in libido and mood.

You also asked about dehydration and the answer is yes. Although, as long as you are not severely dehydrated when you are having your bloodwork done, then it should be reflective of your baseline (assuming your baseline is not dehydrated). Either way, as far as the dangers of clotting go, it does not matter whether the high hct came from dehydration or erythropoesis or both. It is equally dangerous to have a very high hct, thought with the dehydration you can fix it more easily just by drinking some water.

If I were him I would certainly take enough trt to where it does make a difference, and manage the erythropoesis separately. Studies show that VERY often, creams and gels do not even raise total testosterone levels to > 500 and they also tend to be incredibly more expensive than injections. So I would not recommend topical therapy to anyone.

And lastly, I don't know why the high hct wasn't an issue at the beginning, but it is now.

I hope my reply can offer some help to you and your husband.
 
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.
 
Andy, do you mind sharing what your ferritin level is? I'm curious because I believe my husband's was already quite low when he was told to start therapeutic phlebotomies, but iron had not been checked for quite some time, prior to that, so I can't be sure.

Also, are you able to maintain the ferritin level by taking iron along with phlebotomy, as you mentioned? I would like to sort out some kind of "routine" for how to do this and how often. Experience taught us that we need to be vigilant on the blood thinning and space the phlebotomies out as much as possible but the ferritin issue is still unclear.
 
The good thing is that in several studies hematocrit seems to stabilize after 18 months on testosterone in several men. The body adjusts by changing the size of red blood cells.

No TRT option is better than other when it comes to increased hematocrit.

DHT seems to be the variable closest linked to increased red blood cells. We know that gels can actually increase DHT more than injections or pellets.
 
Nelson, thanks. I read what you are talking about, but unfortunately, my husband was not one of those who hematocrit stabilized. :( 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.
 
Managing secondary polycythemia -
Secondary Polycythemia Treatment & Management: Medical Care, Surgical Care

Current applications of therapeutic phlebotomy:
Current applications of therapeutic phlebotomy

It is interesting to note that the recommended hematocrit levels before therapeutic phlebotomy are different, according to the reason for the phlebotomy. In Polycythemia Vera, the target number for HCT is 45 but for other secondary polycythemias, the HCT is higher before phlebotomy is recommended (depending on the cause of elevated HCT).
 
Lockout888 said:
Just found this thread. I posted my similar situation in the Testosterone Basics & Questions forum (can't post direct links yet).

What is the best way to keep iron/ferritin levels up without spiking hematocrit too high?
Click to expand...

I'm in the same boat, so I'm going to 1) stop donating blood as ferritin is quite low (and is screwing up my thyroid), 2) decrease T to 100mg per week (instead of 150mg).

What did you choose in the end?
 
Beyond Testosterone Book by Nelson Vergel
Lockout, not sure who you are asking, but currently, my husband has stopped the frequent donations and is only donating once a year. He levels are always borderline high or "very high" according to the lab parameters, but his current doctor is not overly concerned. The goals for polycythemia vera are different from the goals of secondary polycythemia, though my husband's last doctor was hypervigilant, no matter the "cause." Since we are a little concerned, he takes nattokinase/serrapeptase/lumbrokinase, alternating them, morning and night, since these enzymes seem to be the only supplements that work on both artery and vein clots. This article may provide some clarity to you and your doctor regarding safe HCT and HGB levels: Secondary Polycythemia Treatment & Management: Medical Care, Surgical Care. My husband has some other health issues, including other hormonal issues, which confounds things a bit. I have read quite a few articles/studies on low thyroid and how just getting the thyroid straightened out often corrects low iron and low testosterone. Our current trial regimen for thyroid is following Dr. Brownstein's iodine dose recommendations (12.5mg daily), adding 200mg selenium, 500mg L-Tyrosine and Magnesium Threonate. We'll see in a few months if labs look any different, better or worse. Also, another avenue we haven't pursued at this point, is getting tested for sleep apnea. Obstructive or centralized sleep apnea can cause increased RBC, HCT and HGB and I have read that correcting that (if your case is correctable) can sometimes solve the issue -- in other words, you could be predisposed to having thick blood for other reasons besides "just" testosterone therapy. In my husband's case, he has several risk factors.
 
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