Hi. I am new to this site/forum, and I have a question for anyone who has any insight on this issue. I read through the FAQ and various posts related to anemia, iron levels, ferritin and so forth relative to rapamycin, but I am still confused about this.
I have taken Sirolimus on and off, for long periods, for a few years. I usually take 6mg once per week, and I take a break after my script runs out. I am wondering why Dr. Green orders a ferritin test before putting a patient on rapamycin. Is he more concerned about low ferritin or high ferritin?
I do not know how rapamycin affects me or my bloodwork. I seem to tolerate it well. I usually have very low ferritin, low RBC, low hemoglobin and low hematocrit. But if I take iron supplements, I can slowly move all or most of these measures into the low-normal range (my RBC seem to always be low). I’ve had multiple iron panels and three doctors (a rheumatologist, hematologist and gastroenterologist) all believe my test results point to some sort of slow blood loss situation, possibly something going on in my intestinal tract.
So I’m wondering if rapamycin is potentially harmful or counterproductive in this sort of situation . . . or if perhaps, to the contrary, there is reason to believe it could be helpful in this situation. I’ve had colonoscopies and stool occult tests and nothing is showing up as an answer to the possible slow blood loss. I don’t really want to take iron supplements. Also, I’m wondering if increasing my rapamycin dose makes more sense than discontinuing rapamycin.
Any guidance on these questions would be tremendously appreciated. I’m obviously not looking for medical advice, but at least knowing why Dr. Green orders a ferritin test would be helpful. In general, would rapamycin theoretically tend to be helpful, or, to the contrary, harmful, or counterproductive, in a blood-loss anemia situation?
I am old, so that may be part of the problem. My ferritin levels remain in the very low normal range since starting rapamycin. I must take an iron supplement to keep ferritin in the normal range.
Most people are well iron’d. A low ferritin isn’t an indication for iron supplementation - a low serum Fe and %saturation … yes. I see many people with plenty of iron and low ferritins …. The action is generally to do nothing. The worst action to take, is to iron overload which is clearly bad for longevity.
So we have to know your Serum Fe/Sat/TIBC to assess this and choose if anything needs to be done. An isolated ferritin isn’t sufficient to do anything.
In regard to why order ferritin - we’d expect it to come down with Rapamycin on average — so not ordering it for iron … ordering it as a marker of inflammation.
I’d further look at your Hgb and MCV. Unless those were running low, I’d personally - do 2 things: #1 Make sure there wasn’t any occult blood loss #2 Monitor every 2-3 months and unless Hgb or MCV were going low … continue to monitor
The rationale, is that running a bit low on Fe IF it isn’t resulting in significant microcytosis (low MCV) or low Hgb (usually the MCV will drop before you go down much on the Hgb), seems to be a good thing for longevity.
Not medical advice as I don’t know all your situation, but as a general approach and rationale on something like this.
If you’re going to try a supplement use lactoferrin or proferrin. I use lactoferrin and I think it keeps you from getting sick, reduces AGE’s… several really good things. Also if you eat red meat it helps to take vitamin C with it.
I never found Rapa to have a significant effect on ferritin. I get checked yearly and have been on Rapa maybe 4 years now, noticed nothing. My number varied little.
The main problem with low iron levels is low red blood cell count which leaves me with low energy levels and lethargy. I have been tested for blood loss and it was negative.
Yes - you are in the group with low iron stores and low ferritin - this equals - surveal for reasons you are low on iron - especially occult losses of blood, and supplement. This is not the common situation in older men. Usually there are increased iron stores and a need to avoid iron.
Given that my iron panels consistently point to some sort of occult blood loss (3 different specialists agree on that) and that it is most likely----or very possibly—some sort of small intestinal telangtasia that is not treatable—and that I can probably improve but not fully correct my anemia situation with diet and maybe also Vitamin C . . . and that I could improve it even more by taking supplemental iron, something I want to try hard to avoid . . .
My question is: Does taking low-dose rapamycin once per week potentially help----or to the contrary, potentially hurt, in this situation? I’m wondering about the theoretical usefulness, or risk, of rapamycin in a blood loss anemia situation, based on the science and what rapamycin does in the body. I would even appreciate educated guesses on this. Thanks! Also, does anyone have a guess as to why Dr. Green orders a ferritin test and whether he is more concerned about low ferritin—or, to the contrary—elevated ferritin, and why?
I don’t know how old you are, but if you are older than 65 your low RBC may be affected by your age. Also, genetic factors may influence RBC production.
Erythropoiesis, or red blood cell production, occurs in the bone marrow.
"Younger Individuals (Under 65 Years)
In younger individuals, between 20,000-200,000 stem cells contribute equally to the production of new blood cells.
The process of hematopoiesis (the formation of blood cells from stem cells) is more consistent and efficient."
Older Individuals (Over 70 Years)
In older individuals, blood cell production varies significantly.
The variability in blood cell production may be due to age-related changes in the bone marrow and stem cell function."
This was my doctor’s theory after testing for occult blood.
He advised me not to donate blood and prescribed an iron supplement.
He had no doubts that my bone marrow was producing fewer stem cells.
Excess iron accumulates in tissues and triggers oxidation, that is, accelerates aging. Rapamycin, on the other hand, seems to increase lifespan indirectly, possibly by lowering iron.
Right on Grant. I virtually never find anyone who is low iron. People are relying on ferritin which as you correctly share is NOT an iron marker. 99% of physicians or more don’t understand this. Iron is an mTOR agonist and anabolic so rapamycin being to move iron from the tissues. I would love to see liver MRI studies pre and post rapamycin over time.
Apart from the obvious “ask Dr. Green”, I agree with Bicep comment “If you’re going to try a supplement use lactoferrin or”.
I just started lactoferrin and I search this site for things like that as there are so many smart people here. I always find good advise. Please forgive me as I am just a lay person with no formal training and am not really sure if the links below can be of help or are totally relevant.
Regarding RAPA effects on RBC. I have been on 6mg Rapa for 13 months. At one point I was doing 12oz of Grapefruit juice and a shot of EVOO just prior to taking the 6mg. After 4 to 6 weeks of that, I got a blood test and had platelets and RBC count in the red range. My doctor suggested stopping the Rapa for a couple weeks and then retesting. That did work and did raise back the RBC and platelets so I restarted 6mg per week with no more GFJ or EVOO… My point is to check what supplements you take to make sure no unintended interactions when on RAPA.
Regarding increase RBC’s with a supplement, I saw below link which summarized;
Results: oral administration of bovine lactoferrin (BLf) significantly increases the number of red blood cells, hemoglobin, serum ferritin and total iron after thirty days of the treatment. BLf is a more effective and safe alternative than elemental iron for treating iron deficiency and iron deficiency anemia. Conclusion: lactoferrin is a better substitute for elementary iron in treatment of iron deficiency.
