Been on TRT for 5 years. (Age 48 years). Never had hemoglobin or hematocrit get outside of range, but would occasionally get close to upper limit at times. Started donating blood on an occasional basis (2-3 times per year) with no issues. Starting in January 2016, I thought I would be a good guy and start donating blood more frequently. Previously, a donation always made me feel good (physically) and I liked that I was doing something to help others. In 2016, I donated one pint of whole blood almost exactly every 56 days. I did have donation period that was 23 days between two separate donations. Not sure why I did that, except there was a local blood drive. I knew better, but did the donation anyway.
Sometime during the year 2016, I started feeling lethargic at times, occasionally weak, but not overly so. I dismissed the symptoms and kept going forward. My last blood donation in 2016 was 11/13/16. On January 12, 2017, blood work showed:
ferritin level < 10ng/ml (30-40ng/ml)
serum iron 28ug/dl (59-158ug/dl)
Rbc 5.2 (4.1-5.6)
Hgb 13.9 (12.5-17.0)
Hct 42% (36-50%)
Mcv, Mch, Mchc all in limits but right at the lowest point on scale
Rdw 16.6% (11.7-15)
Testosterone serum 606, Free 15.06
As a follow up, labs were repeated on 3/20/17:
ferritin 6ng/ml (20-380ng/ml)
serum iron 29mcg/dl (50-180mcg/dl)
Rbc 5.36 (4.2-5.8)
Hgb 14.4 g/dl (13.2-17.1)
Hct 44.3% (38.5-50.0)
Mcv 82.6 fl (80-100 fl)
Mch 26.9 pg (27.0-33)
mchc 32.5 g/dl (32-36)
Rdw 20.3% (11.0-15.0)
Then, donated 1 pint whole blood on 5/1/17 and then again on 6/26/17. (Before asking, why the donations, I don't know. The doctor mentioned the low iron only, but only said we would check it again next time. I mentioned giving blood, and doctor said it was likely from that.)
Sometime around July 2017, I started feeling very tired at times. I would often take naps during the day and sometimes couldn't get a good night's rest. Started having frequent headaches, and occasionally would become lightheaded but never fainted. Started having some occasional chest discomfort (not pain, but bothersome) and would also, at times, have some peripheral neuropathy in arms---just enough to be noticeable and annoying. I would be short of breath at times, too, especially excercising.
In August 2017, went to doctor to have an EKG to make sure issues weren't heart related. CBC was drawn and showed: Rbc 5.44 (4.10-5.80), Hgb 13.9 (12.5-17.1 g/dl), Hct 43.4 (36-50%), Mcv 79.8 (80.0-100 fl), Mch 25.6 (27-34 pg), Mchc 32.1 (32-36 g/dl), Rdw 16.8 (11-15%). The iron serum was 34 ug/dl (59-158), Ferritin < 10 ng/ml (30-400)
EKG was fine; echocardiogram was fine.
Had CBC redone on 11/27/17; Rbc 5.95 (4.20-5.80), Hgb 14.8 (13.2-17.1 g/dl), Hct 47.3 (38.5-50%), Mcv 79.5 (80-100 fl), Mch 24.9 (27-33 pg), Mchc 31.3 (32-36 g/dl), Rdw 18.3 (11-15%)
12/20/17 donated one pint whole blood.
CBC 1/11/18, Rbc 5.45, Hgb 14.8, Hct 45.6, Mcv 83.7, Mch, 27.2, 32.5, Rdw 17.0 (scale limits same as 11/27/17)
Around 1/11/18, started having tingling in left foot and occasional tingling in face. It was very light, but concerning. Felt cold a lot and sometimes fingers and hands would feel cool or like they might come numb, although they wouldn't. Doctor ordered a lot of other blood tests, but they were all fine. The doctor was uncertain what was going on and made a referral to neurologist. Before seeing the neuro, I visited another doctor who redrew iron panel, which showed on 2/7/18: D-TIBC 500 (250-450 ug/dl), TSAT 32 (15-50%), Iron Serum 158 (59-158 ug/dl), Ferritin 17 (30-400 ng/ml). I should point out that prior to the iron panel bloodwork, I had started taking an iron pill on a daily basis. I had developed restless leg syndrome issues and read that it could be from low iron. I had been taking the iron pill 2-3 weeks before the iron panel was drawn.
In late February, I had a cervical MRI and Lumbar MRI because of the tingling in the lower extremities and the facial parathesia. Both MRI were normal with exception of mild degenerative disc disease, which is normal for my age (48 years). The doctor referred to neurologist.
My blood pressure had been slightly elevated, which was unusual for me. The doctor suggested I might donate blood to see if that would help. Yes, I know. With all the low issues and CBC issues staring her in the face, she suggested a blood donation. So on 3/2/18, I donated a pint. Within 3 days, the tingling in my legs that I had been having got a lot worse. Muscle twitches were more frequent. Facial tingling was all day. Anxiety went way, way up. And, I became very concerned. I couldn't stay off the internet searching for answers. The anxiety got worse and worse; I couldn't sleep more than 2-3 hours each night; developed tinnitus in both ears and generally felt like I might have multiple sclerosis or ALS. I have never experience anything like this, but I can say the anxiety was real.
By the time I saw the neurologist, I was a nervous wreck. He reviewed by lab work and right away said the ferritin level was extremely low. I had no idea he would immediately hone in on that. He was emphatic my symptoms of Restless leg, parathesia, etc. were coming from that. The muscle twitches he diagnosed as benign fasculatations due to anxiety and possibly related to low ferritin as well. He put me on Integra iron capsules, one each day and sent me for a brain MRI just to be safe. Within a week, the brain MRI came back negative and the neurologist said you don't have MS or ALS. He said, let's get your ferritin up and you'll be fine. He said it could take 3-6 months. And yes, he knew I was on TRT; we discussed it briefly. He referred me to a hematologist as well just for a consult---not due to a new problem.
At this point, I felt a lot better. Anxiety came down and I felt like I was finally on the road to getting me. EXCEPT, when I go see the hematologist, he didn't seem to care much about the low ferritin and really didn't think I needed to be on iron pills. He never looked at my blood donation record or past blood work; he only want to see the most recent (February 2018). He said he is 95% sure I have polycythemia secondary to TRT. He said the swings in Hgb and Hct can cause unusual symptoms. He wants me to wait a month before having new blood work done to give more time since last blood donation and recommended stopping the iron pills. He also wants me to have an abdominal ultrasound to check the liver and spleen. He said he doesn't expect any issues but wants to be sure.
After all this, here is my thoughts and questions:
I think I have iron deficiency anemia due to low ferritin, low iron, increased Rdw, low Mcv, low Mch, etc, which is secondary to excessive blood donations The CBC issues seem to be classic for iron deficiency anemia. I think the only reason my Hgb and Hct have not tanked below normal is the TRT has kept the levels in the normal range. My TRT dose is now 125mg every 14 days.
I am continuing to take the Integra iron, but I have to take it every other day (or sometimes every 3 days) because it creates stomach issues. I'm not trying to discount the hematologist, but I have set up an appointment with a different hematologist because the one I saw was not a good listener. He didn't seem to care about my blood donation record or my symptoms.
I know this is a long post, but I welcome any comments or feedback.
Sometime during the year 2016, I started feeling lethargic at times, occasionally weak, but not overly so. I dismissed the symptoms and kept going forward. My last blood donation in 2016 was 11/13/16. On January 12, 2017, blood work showed:
ferritin level < 10ng/ml (30-40ng/ml)
serum iron 28ug/dl (59-158ug/dl)
Rbc 5.2 (4.1-5.6)
Hgb 13.9 (12.5-17.0)
Hct 42% (36-50%)
Mcv, Mch, Mchc all in limits but right at the lowest point on scale
Rdw 16.6% (11.7-15)
Testosterone serum 606, Free 15.06
As a follow up, labs were repeated on 3/20/17:
ferritin 6ng/ml (20-380ng/ml)
serum iron 29mcg/dl (50-180mcg/dl)
Rbc 5.36 (4.2-5.8)
Hgb 14.4 g/dl (13.2-17.1)
Hct 44.3% (38.5-50.0)
Mcv 82.6 fl (80-100 fl)
Mch 26.9 pg (27.0-33)
mchc 32.5 g/dl (32-36)
Rdw 20.3% (11.0-15.0)
Then, donated 1 pint whole blood on 5/1/17 and then again on 6/26/17. (Before asking, why the donations, I don't know. The doctor mentioned the low iron only, but only said we would check it again next time. I mentioned giving blood, and doctor said it was likely from that.)
Sometime around July 2017, I started feeling very tired at times. I would often take naps during the day and sometimes couldn't get a good night's rest. Started having frequent headaches, and occasionally would become lightheaded but never fainted. Started having some occasional chest discomfort (not pain, but bothersome) and would also, at times, have some peripheral neuropathy in arms---just enough to be noticeable and annoying. I would be short of breath at times, too, especially excercising.
In August 2017, went to doctor to have an EKG to make sure issues weren't heart related. CBC was drawn and showed: Rbc 5.44 (4.10-5.80), Hgb 13.9 (12.5-17.1 g/dl), Hct 43.4 (36-50%), Mcv 79.8 (80.0-100 fl), Mch 25.6 (27-34 pg), Mchc 32.1 (32-36 g/dl), Rdw 16.8 (11-15%). The iron serum was 34 ug/dl (59-158), Ferritin < 10 ng/ml (30-400)
EKG was fine; echocardiogram was fine.
Had CBC redone on 11/27/17; Rbc 5.95 (4.20-5.80), Hgb 14.8 (13.2-17.1 g/dl), Hct 47.3 (38.5-50%), Mcv 79.5 (80-100 fl), Mch 24.9 (27-33 pg), Mchc 31.3 (32-36 g/dl), Rdw 18.3 (11-15%)
12/20/17 donated one pint whole blood.
CBC 1/11/18, Rbc 5.45, Hgb 14.8, Hct 45.6, Mcv 83.7, Mch, 27.2, 32.5, Rdw 17.0 (scale limits same as 11/27/17)
Around 1/11/18, started having tingling in left foot and occasional tingling in face. It was very light, but concerning. Felt cold a lot and sometimes fingers and hands would feel cool or like they might come numb, although they wouldn't. Doctor ordered a lot of other blood tests, but they were all fine. The doctor was uncertain what was going on and made a referral to neurologist. Before seeing the neuro, I visited another doctor who redrew iron panel, which showed on 2/7/18: D-TIBC 500 (250-450 ug/dl), TSAT 32 (15-50%), Iron Serum 158 (59-158 ug/dl), Ferritin 17 (30-400 ng/ml). I should point out that prior to the iron panel bloodwork, I had started taking an iron pill on a daily basis. I had developed restless leg syndrome issues and read that it could be from low iron. I had been taking the iron pill 2-3 weeks before the iron panel was drawn.
In late February, I had a cervical MRI and Lumbar MRI because of the tingling in the lower extremities and the facial parathesia. Both MRI were normal with exception of mild degenerative disc disease, which is normal for my age (48 years). The doctor referred to neurologist.
My blood pressure had been slightly elevated, which was unusual for me. The doctor suggested I might donate blood to see if that would help. Yes, I know. With all the low issues and CBC issues staring her in the face, she suggested a blood donation. So on 3/2/18, I donated a pint. Within 3 days, the tingling in my legs that I had been having got a lot worse. Muscle twitches were more frequent. Facial tingling was all day. Anxiety went way, way up. And, I became very concerned. I couldn't stay off the internet searching for answers. The anxiety got worse and worse; I couldn't sleep more than 2-3 hours each night; developed tinnitus in both ears and generally felt like I might have multiple sclerosis or ALS. I have never experience anything like this, but I can say the anxiety was real.
By the time I saw the neurologist, I was a nervous wreck. He reviewed by lab work and right away said the ferritin level was extremely low. I had no idea he would immediately hone in on that. He was emphatic my symptoms of Restless leg, parathesia, etc. were coming from that. The muscle twitches he diagnosed as benign fasculatations due to anxiety and possibly related to low ferritin as well. He put me on Integra iron capsules, one each day and sent me for a brain MRI just to be safe. Within a week, the brain MRI came back negative and the neurologist said you don't have MS or ALS. He said, let's get your ferritin up and you'll be fine. He said it could take 3-6 months. And yes, he knew I was on TRT; we discussed it briefly. He referred me to a hematologist as well just for a consult---not due to a new problem.
At this point, I felt a lot better. Anxiety came down and I felt like I was finally on the road to getting me. EXCEPT, when I go see the hematologist, he didn't seem to care much about the low ferritin and really didn't think I needed to be on iron pills. He never looked at my blood donation record or past blood work; he only want to see the most recent (February 2018). He said he is 95% sure I have polycythemia secondary to TRT. He said the swings in Hgb and Hct can cause unusual symptoms. He wants me to wait a month before having new blood work done to give more time since last blood donation and recommended stopping the iron pills. He also wants me to have an abdominal ultrasound to check the liver and spleen. He said he doesn't expect any issues but wants to be sure.
After all this, here is my thoughts and questions:
I think I have iron deficiency anemia due to low ferritin, low iron, increased Rdw, low Mcv, low Mch, etc, which is secondary to excessive blood donations The CBC issues seem to be classic for iron deficiency anemia. I think the only reason my Hgb and Hct have not tanked below normal is the TRT has kept the levels in the normal range. My TRT dose is now 125mg every 14 days.
I am continuing to take the Integra iron, but I have to take it every other day (or sometimes every 3 days) because it creates stomach issues. I'm not trying to discount the hematologist, but I have set up an appointment with a different hematologist because the one I saw was not a good listener. He didn't seem to care about my blood donation record or my symptoms.
I know this is a long post, but I welcome any comments or feedback.
