UPDATE: Help! Severe hair loss six years out! Ideas? (RANT)

 Hey freinds,
Thanks to all of you who answered my yesterday when I posted about my severe hair loss problem!
I just can't get over how this has gone down today.

First, I got my bloodwork results from my dermatologist today. My D is a little low, but my ferritin is VERY low. It's at 7 and the normal range is from 10-132 according to the chart on my paper from the lab.

So,I talked to the nurse and said that I really think an iron infusion would help me, that my iron isn't being absorbed via oral prescription because of my bypass, etc. 

She said no.  She said she didn't  think I was low enough to warrant an infusion, and just to take more oral iron. 
Then she said that she'd be glad to prescribe Propecia for me, though she wasn't sure it would work since my hair loss is all over my head, and isn't female pattern baldness. She said that it's a bit dangerous as it can cause excessive potassium in my body so we'd have to do monthly bloodwork to keep an eye on that. 

Someone please tell me why it makes more sense to give me a prescription for propecia which could harm me as opposed to giving me a simple iron infusion which will help me, not hurt me, and which will not be nearly as expensive as a monthly prescription for propecia plus monthly bloodwork. UGH!!!!!

Finally, I called my bariatric surgeon's office today. I told the nurse what was going on and she said, "of course the ferritin is why your hair is falling out! It definitley affects that!" So she is going to work to get me a referral to their preferred hematologist so he can help me. Fingers crossed!

Anyway, I'm working hard to get my protein up to 100 grams a day, and hope that between that and iron my hair loss will stop. It's truly upsetting me to have so much loss. It's getting more and more noticeable after months of being told no about my iron infusion...asked my family doctor about it in July, and he also said no. Thyroid and everything else was normal, just had low ferritin. 
When will the listen to us? 

Again, thank you all for answering me last night; I appreciate the support very much. 

Yeah, you need a hematologist, not a dermatologist.  And you need a smarter dermatologist, who has enough sense to either refer you to a hematologist or back to your PCP for such a referral.

I'm sort of surprised that you got labwork done by a dermatologist; I'm used to do it with my PCP, my gastroenterologist, my hematologist, and my bariatric surgeon(s) but never my dermatologist. 

Dermatologists are a pretty important part of healthcare that many people skip.  While there is an overlap with medical specialties, dermatologist tend to overlap with plastic surgeon but not hematologists. 

BTW, I got my first notification about low iron shortly after I returned from Kuwait in August 2011 as an emergency from a gastroenterologist covering Labor Day weekend for my regular gastroeneterologist.  He had me rush to a hospital emergency room IMMEDIATELY for a four unit (four bag) transfusion for which I was admitted to the hospital.  It was followed up by about eight iron infusions (different type of iron on the labs) with two different hematologists/oncologists.  (In the past year, I changed bariatric surgeons and hematologists because it was not working right for me.)  Anyway, the treatments worked for me and were totally painless.  Having them was an enforced time out for relaxing.

I hope you get those iron levels up again SOON.

 Well, I was at the dermatologist for a cyst removal surgery on my scalp. While there I told her about my hair loss, and she said she didn't see any reason on the scalp itself  that it would be falling out, and she suggested Rogaine and said she'd do bloodwork to see if we could pinpoint why it's happening. Then the results came today, and so on.

I had already asked my primary care doc about it in July, and he checked my blood. He didn't do the iron breakdown, just the combined iron which was 137, but that didn't show the low ferritin, I don't guess. Thyroid and testosterone, other hormones, etc., were all normal.

How low was your iron when you had to have blood transfusions? Oh my gosh!!

4.  I was told, if I didn't get the emergency transfusion, I wouldn't live to see the end of the month.

Wow! The lowest my ferritin got was literally a 1, iron was 6, and hematocrit was 23. The doctor at my university's health care center had no clue how I was even still standing, let alone going to class and school activities every day. I just thought I was a sleep-deprived college student, but she noticed that the inside of my eyelids was stark white during an exam and did blood work. She called me a few hours later and told me to come straight back to her office, then got me an appointment with a hematologist the next day.

The odd thing was that I'd been really vigilant about taking my vitamins, and we tried every kind of oral iron imaginable. Some RNY post-ops just don't absorb it orally.

I didn't have such good luck with my first attempt at infusions. My hematologist tried ferrlecit and I had such a severe allergic reaction that I went into anaphylactic shock during the second treatment, even though they'd given me a round of IV benadryl first. They eventually convinced me to try Venofer, and I had those infusions every month for a year and a half.

Since then I've been able to maintain decent levels through diet, but it was pretty tough. I hope the OP gets in touch with a good hematologist. Dermatologists are great, but a blood specialist will be able to give you much more specific treatment.

I'm glad you had such a good result from the Venofer, especially after the ferrlecit anaphylatic shock.  My mother had to carry around an Epipen because she was dreadfully allergic to bee stings.  It was a good thing she had it, too: during her last few weeks, somehow, Africanized bees built a nest in the fireplace and we had to get someone out to remove it and put a vent on top of the chimney to prevent recurrences on an emergency basis.

Wow, I am so glad that she had it! She is very fortunate and very smart to keep it with her. I am always surprised at how many people with severe food or bee sting allergies don't carry them.

I don't carry a pen since I don't think anyone is going to chase me down the street with ferrlecit, but it is on my medical ID bracelet that it shouldn't be given to me.

I think we THINK they don't listen to us but they do look at our chart and we of course may not remember what happened the last visit bla bla...and they can give us a better (sometime persepctive that we can ourselves otherwise we'd be doctors......and we do have a tendency to over react or get anxious while they do not.  However, sometimes it can be that they just DON'T know how to treat something and try to apease us...so when we really feel something is not right...don't give in complaining, and seeking an answer.  If one doc doesn't have check with another one..someone is bound to give us the answer...But hair loss is common among RNY patients.  Though I would think a 7 Hemoglobin is very low.....I think Ferrin is not as dangerous if it's that low...IDK...

Stephanie, glad to hear your surgeon is making a referral to a heme for you.  I suggest you bring a year or two of labs so the heme can review the trends.  Although my ferritin wasn't totally tanked this year (like last) it had dropped significantly since my infusion last June/July and I was worried and feeling the results of the drop.

Once the heme saw the trend he was 100% in agreement that I needed infusions now and not once my iron stores were depleted more.  I love my heme he is very proactive and has even ran additional labs since I'm still not feeling energetic (although better).  Come to find out my hormones are very out of whack.  I have a followup with him on Friday, hoping to get referrals and suggestions on how to proceed on the hormone issue.  BTW, not real happy with my OB/GYN at this point, they seemed nonchalant on the hormone levels stating that it isn't uncommon after a hysterectomy (OK I get that, but when I feel like **** then it's time to make changes).  Sorry to go on a rant here.