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Anyone here had iron infusions?

Discussion in 'Women's General Hair Loss Discussions' started by eggplant, Apr 7, 2016.

  1. eggplant

    eggplant Established Member

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    I was wondering if anyone has tried (or been able to get) iron infusions? My ferritin was 9.9 back when this all started a few years ago and has been slowly crawling upwards and fluctuating. The highest I've been is in the 40s or 50s. And that's while taking 1050 mg daily. My doctors all seem stumped why I've been so anemic since I eat red meat and don't have heavy periods. I've also been having GI issues lately and have decreased my iron supplements a bit until I'm sorted out. I'd like to push for infusions, but I have no idea what sort of response I'll get from the doctors or what results I would see, (or how many treatments I'd need -- I have really awful insurance so this matters).
     
  2. hairtothere

    hairtothere Established Member

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    I had iron infusions (Venofer) they work really well and are very easy. My ferritin went up into the 90's with 2 infusions. The only downside is they are very expensive (around 10K for 2), my insurance paid for most of mine but I was anemic, low serum iron, low hemoglobin and my ferritin was so low (under 5) it couldn't be read.

    Not all insurance will pay for infusions or they won't pay for Venofer which is the best tolerated but most expensive.

    ETA:

    Now that I have had the infusions it seems that my body doesn't absorb supplements at all and I will require regular infusions to keep my ferritin up. I get my blood drawn every 12 weeks and when my ferritin hits a certain level my Dr. sends me for a top off at the infusion lab. which is at the chemo clinic of our local cancer center.
     
  3. Lily

    Lily Senior Member

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    hairtothere, has this helped your hair loss?
     
  4. hairtothere

    hairtothere Established Member

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    Lily, the short answer is that yes raising my ferritin has helped my hair recover. My Dr. estimated it would take about 2 years to raise my ferritin using oral supplements. With infusions I got my ferrtin where it needed to be withint 2 weeks.

    I had TE hairloss the only trigger we found was critically low iron and ferritin. I didn't have my TE shed until about 2 &1/2 months after I started supplementing with iron. After I corrected my anemia and low ferritin my TE stabilized and my hair started recovering. It felt like I lost at least 50% of my hair in a diffuse pattern. My hair stylist said she thinks it was more like 30%. I never had a widened part or bald areas with scalp showing, but my hair was completely changed. It was dry and weightless and it didn't take color well and got damaged easy. My Derm told me in Oct. 2014 that it would take 2 years to see recovery and I am just now feeling "normal" again. My hair is not 100% back but it is close enough that I am confident in my appearance once again.
     
  5. Kelly7

    Kelly7 Established Member

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    Hairtothere, were to taking iron before you found out you were anemic? You mentioned your TE began 2.5 months after you started supplementing.
     
  6. hairtothere

    hairtothere Established Member

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    No I was not taking iron at all. I had surgery to correct heavy periods (fibriod removal) in 2010 and they told me I was "slightly anemic" then. My Gyn specifically told me not to take iron because my periods went back to normal and became very light. I had very, very thick and healthy hair then too. It was not until 4 years later that my family Dr. ran routine bloodwork and my hemoglobin, iron and ferritin were all critically low. At that time I still had very thick hair, but it had become somewhat damaged. I blamed that on chemical damage, my hair stylist had passed away and I went through some bad dye jobs in finding a new one.

    I started supplementing with oral iron 8/14 and by 10/14 my shed and TE hair loss started. It started and stopped fairly quickly. I would say that by Nov. it was done. I went through a period of a few months where nothing at all happened no loss, no new growth. I was supplementing and then went to infusions in 2/15 and my ferritin was corrected by 3/15. My hair as of last week is visibly recovering. I have lots of new growth the thickness is returning, I can style it again. The condition has much improved.

    I think the iron may have been the "trigger" in my TE only because I had been anemic for so long that when I started supplementing so heavily that was a "shock" to my system somewhat.
     
  7. Kelly7

    Kelly7 Established Member

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    Wow, I wish I had a quick TE like that! Do you know what your ferritin was before you went for infusions? I've been supplementing with iron since October 2010 and the highest my ferritin went to, was 58 last fall. It is probably around 40 now since I cut back on my high doses of iron. Does your doctor who estimated that it would take about two years to get your ferritin up, want your ferritin around 80-90? I had a fibroid removed last year. A couple weeks after the surgery, I had my worst TE ever!
     
  8. hairtothere

    hairtothere Established Member

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    My ferritin levels - 8/14 = less than 5 - Started supplements 3x's per day (10/14 = 15) my TE shed kicked in Oct 2014, I kept supplementing and retested (1/15 = 27)

    My Dr. and I discussed infusions at this point. I was afraid to try them when I was first diagnosed with anemia I read all kinds of horror stories. Just the fact that they were done in a Chemo clinic felt scary and serious to me. But my Dr. felt that in order to give my hair the best chance at recovery and help the horrific fatigue I was experiencing I needed to try the infusions and I was ready. Taking all that iron was so hard on my stomach, and my ferritin progress was pathetic. My Dr. wanted my ferritin as close to 100 as possible. He believes that it is important for Fibromyalgia patients to have healty ferritin levels, plus we had the added factor of the stress that my appearance was causing. I went for 2 infusions in Feb 2015 and was checked in March my levels were 89 we decided to hold there and monitor. My levels have slowly come back down with normal supplementation so I am likely going in for 2 or 3 more infusions starting next month.
     
  9. Kelly7

    Kelly7 Established Member

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    Is it a Derm who ordered your infusions? My mother had an iron infusion last year and her ferritin went up to about 750. I'd be worried that it might shoot up really high like like that! My ferritin must have been in single digits when my hair loss started because after a year of supplementing, I had a ferritin of 20. It remained around 20 for another 2.5 years eventhough I was supplementing every day. My Derm thinks that a ferritin of around 50 is fine but I'm still aiming for 70-90 just to see what happens. LOL Sometimes I notice more shedding when I take iron and even thought iron supplements were causing my hair loss. Other times, I think that a higher ferritin helps slow down my shedding and helps regrow hair. It probably does nothing at all for my hair!
     
  10. hairtothere

    hairtothere Established Member

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    It wasn't my Derm that ordered the iron infusions it was my family Dr./GP. I'm blessed with a great Dr. who actually personally responds to e-mails and listens. He took my hair loss seriously and has known me for 20 years so he saw the difference in my hair. When he did the pull test, there was hair coming out everywhere. My Derm didn't know a thing about anemia and ferritin or their connection to hair loss. He just proclaimed I had TE and it would eventually resolve. I saw another Derm that was a bit better and agreed I should try to raise my ferritin. That was the Derm that said it would take about 2 years to recover a normal head of hair. I do still have a ways to go but I'm having good hair days and that is such a relief.

    I am starting to think some people just naturally have lower ferritin as a norm. We still don't know exactly what caused my liver enzymes to spike in May. It can be a side effect of iron infusions or excessive iron intake. The toxicologist wondered if we forced my liver to store more iron than it normally would hang on to. It is also commonly caused by Lysine which I was taking to enhance iron absorption. I guess I will know if it is the infusions when I get them this year. Last time the elevated enzymes came down on their own, but I was also treated with IV NAC. NAC is what they use for Tylenol overdoses. It has a protective effect on the liver. My enzymes returned to normal within 2 weeks.

    A for your mom's going up to 750 that is really scary, did she have any side effects? Was it just the one infusion? My nurse showed me the formula you use to determine the dose and number of infusions and mine was really close. We aimed for ferritin of 100 and got 90 with 2 infusions of 200mg Venofer. I felt amazing after the infusions, zero negative side effects.
     
  11. eggplant

    eggplant Established Member

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    Thank you so much for the information, hairtothere!
     
  12. Kelly7

    Kelly7 Established Member

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    It sounds like you do have a great doctor. :) Not one doctor I've seen has told me that my ferritin needs to be about 80. Once when I brought in some articles to a doctor about ferritin and hair loss, I was told that the study wasn't large enough...blah, blah, blah. I think a lot of people have low ferritin and most of them probably don't even have hair loss. Do you know if bilirubin that is a little higher than reference ranges, is related to taking iron supplements? Mine has been high for at least 2-3 years but my other liver tests are fine.

    My mother was very tired when her ferritin was really high. Strangely enough, her hemoglobin and hematocrit were really low. I think it was from one infusion.

    I'm glad you are having good hair days. :)
     
  13. hairtothere

    hairtothere Established Member

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    I'm not sure about billirubin, when I was hospitalized it was with elevated AST & ALT levels they were in the 1600's and 1800's when my normal was 15 and 25. They would not release me from the hospital until my numbers were trending downward, which they started to do within 8 hours of IV NAC and a broad spectrum antibiotic.

    Your mom may be tired due to her hemoglobin being low not ferritin being high, but it is so hard to say. Did your mom's ferritin stay elevated? It is crazy that one infusion would have done that, has she been tested for Hemochromatosis?
     
  14. mycurlyhair

    mycurlyhair Experienced Member

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    Thats inspiring Hairtothere!! My ferritin was at 4 and shedding was awful. As soon as I started irons supplements the shedding slowed down. He talked about infusions but since it went up to 20 ish they said no and that it will go up from there. But then it want down again. I am not sure what its at now. Most my docs thing it is normal. My iron itself is on the high side. Do you know anything about that?
     
  15. hairtothere

    hairtothere Established Member

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    Thank you I'm glad it helped someone a bit. When I was in a really dark place last year with my hair loss I swore I would stick around and post where appropriate if I had any improvement. There were so few stories of success after raising ferritin. I suspected it was because for many people things did get better and they went back to "normal" life.

    As for your questions. My Dr. told me that when my ferritin was in the 20's with oral supplements that it was just going to keep going up slower as my ferritin rose. Once it is in the "normal" band your body absorbs less in most cases. In the case of your ferritin dropping and your serum iron being on the high side. Do you stop taking oral iron for a week before having your blood drawn? Some people lack transferrin to convert serum iron into ferritin. I've found that the supplement "Lactoferrin" helps with that. I buy Jarrow. My body tends to lose ferritin too, it may be because of my medications. I have fibromyalgia and have to take NSAIDs daily. Or it is just something that my body does because my "norm" is lower levels of ferritin. I don't really have a baseline of what my levels were before things were "critical".
     
  16. mycurlyhair

    mycurlyhair Experienced Member

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    I stopped them for 3 days. Doctors never have a answer for it being high. I wont be tested for another 5 month so just stciking with my Iron-C diet and taking my vits for now. Shedding is good so thats a plus!
     
  17. Rogins

    Rogins New Member

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    Super high ferritin after infusion

    Hi there. This is my 1st post. My hair shed for years prior to my cancer in 2007, but I didn't think much of it till I lost my hair with chemo & it never fully covered my scalp again since :( . Five yrs later after trying everything, my 2nd dermatologist discovered my low ferritin. It averaged abt 16 but went up & down with iron supplementation. Even with the best liquid iron supps (I use Spatone natural iron water imported internationally, since it doesn't cause constipation & is absorbed fully) I couldn't keep my ferritin level high enuff for hair regrowth. I got it up in the 30s to 50s, & once to 95, just to have it plummet down within days) which I believe was due to my GI condition (SIBO--Small Intestine Bacteria Overgrowth) robbing me of my nutrition, which was systemically caused by my endocrine disease (PHPT--Primary Hyperparathyroidism). Four yrs later, when my ferritin dropped to 16 again, I finally found a hematologist willing to give me iron infusions. Three months ago, just before I had surgery to cure my PHPT, I got one 4-hr dextran iron infusion (the only iv iron my insurance would approve). Two weeks later my ferritin results were a whopping 1370 !!! :freaked: That freaked me out, but I was told it was temporary & not a problem after infusions. My ferritin lowered steadily the first month, but settled at abt 300 for at least a month now. Does anyone know how to find out if an above norm ferritin level several months after infusion is detrimental or conducive to hair growth?
     

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