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Audrey-B 07-10-2007 01:55 AM

First Iron Injection Today
 
Hi all, just thought i'd post about my experience on getting my first iron injection (not to be confused with infusion).

I had my first of five injections today and it was such a relief. First it took the chemist three weeks to get the iron from a supplier and then my doctor was sick last monday and this monday. I began to think i'd never get the ball rolling. I had psyched myself up to think that it would hurt a lot, but once it was done i thought "is that it!!!". He then applied a small bandaid and said i can go home. I guess some doctors are good at giving injections, drawing blood ect, while some aren't and cause a lot of pain and bruising. This doctor definitely knew how to give an injection considering i hardly felt a thing. So if you hear horror stories about how painful iron injections are then i'd say it all comes down to the actual doctor doing the procedure.

The only thing i had done wrong was that i had gotten off the surgery bed too quick plus i'm getting over a winter virus and i had lost my appetite and my stomach was empty. As i was walking through the surgery to leave i had an overwhelming feeling that i was going to faint. Sitting in a chair with my head bent forward doesnt work for me, i need to lay down horizontally. Somehow i got to my car and passed out on the back seat and within minutes i was fine.

That was 7hrs ago and the only thing i can feel is the typical pain in the muscle you get when you have had an injection. The injection is in the upper bottom cheek area and that area is always iffy when getting injections.

As i've still got the flu it's difficult to tell whether i feel any different at this stage due to the injection. Will post again next monday when i get my next injection.

osteoblast 07-10-2007 04:27 PM

Re: First Iron Injection Today
 
Audrey- Sounds like a little excitement with collapsing in the backseat but overall you thought is was ok, right? What was your ferritin level , and why did the doc think an injection was called for?

Glad to hear that you made it through and hope that the injections get you where you need to be!!!

Audrey-B 07-11-2007 12:37 AM

Re: First Iron Injection Today
 
Hi Osteoblast - Basically April 2006 my ferretin was 8 and then i took iron tablets which began to constipate me, then i move to a liquid iron and had no side effects, but progress was very slow as a lot of this over the counter stuff isn't strong enough dosage-wise.

In Feb '07 i saw a Trichologist and he got me onto a much stronger supplement, then i got IBS symptoms from it, then he got me taking organic iron tablets with it to settle my stomach and this worked. In March my ferretin was 29 and in May it was 26. It really killed to get that result showing that i was going backwards rather than forwards.

Due to the slow progress and the initial iron supplement he had me on giving me side effects he suggested that iron injections would work much faster, especially as i need my levels up much higher to stop my hair shedding. Also my thyroid is a tiny bit out and he feels it's all due to low iron levels for so many years.

As my haemoglobin and my b12 are good i got the go ahead for the injections. I wasn't aware that certain key things in your blood test had to be at the right levels before they would do the injections and they generally do the injections for people who are having difficult absorbing iron.

After creating this thread yesterday the muscle at the injection area (at my backside) became a bit stiff and sore. When i went to bed last night i heated up one of those wheat bag thingies in my microwave and laid it across my hip and derrier and today i hardly feel a thing. Maybe this has only happened as it was a first injection, i'm not sure. Will see what happens on monday when i get my next one.

Audrey-B 07-22-2007 09:36 PM

Re: First Iron Injection Today
 
Had my 2nd iron injection today and dont feel any muscle soreness like i did with the first injection. I actually don't feel a thing and i'm having no side effects.

I've been laid low with the flu for the last 2 weeks so missed out on last weeks injection. My gp who is doing the injections asked whether i had noticed a difference in hair shedding. It was nice of him to ask, but it does go to show how little gp's know about low ferretin levels and hair loss/regrowth!! I think he is getting educated along with me getting my injections.....oh well, at least i'm trying to educate him and hopefully he can utilise this with future patients. At least he isn't fobbing me off or trivialising my situation.

As for hair loss, well mine normally stops shedding quite a lot over the winter months. When summer arrives it will be a real test then as that is when i typically begin shedding monstrous amounts from early summer to start of winter.

clairenichols01 07-26-2007 04:46 PM

Re: First Iron Injection Today
 
Audrey,

I also suffer from hair loss and am taking aldachtone and minoxidil from a trichologist. I am going to get an iron injection today as the blood tests tat I have had show that I am low in iron an zinc.

Is there any tips that you have found helpful as summer is coming and I fear the hair loss that will happen.

Also do you have any probs with growing extra hair e.g on arms and face?

Thanks it's good to know that I am not the only one.

Claire

Audrey-B 07-27-2007 01:45 AM

Re: First Iron Injection Today
 
I Claire, i notice you are in NSW too. I'm also worried about summer in a few months time as that is when most of my shedding occurs. Is your shedding all over or just in one area? Mine is all over and quite uniform.

My Trichologist didn't want me taking anything to stop my hair from shedding due to the fact that apparently while you are using these products it keeps your hair from falling out, but once you stop using them the hairs which should have fallen out do fall out. A gp i used to see once told me to get rogaine and when i went to the chemist the lady there just laughed saying that rogaine wasnt for people like me and that i'd be wasting my money and i would be better off finding the source of my hair shedding. Well the gp who advised me on the rogaine knew all along that my iron levels where out and that my immune system wasnt very good, but he just kept telling me very year that my blood test was fine. This makes me so mad b/c i could have done something 6yrs ago and averted all this hair shedding. I simply feel i'm in a much deeper hole now than i would have been 6yrs ago!!

As far as i know, you need zinc (among other things) to help boost iron levels, BUT, if you take zinc supplements when you take your iron supplements the zinc can stop your body absorbing the iron. My zinc, B12 and haemoglobin are all ok, it's just my ferretin. Also the fact that my iron has been so low for so long it has already started affecting my thyroid and moving me towards hypothyroidism. I don't have it yet as such, but my Trichologist has given me new targets he wants me to reach so that i dont end up with full blown hypothyroidism in the future.

I am really happy with my Trichologist. He has given me so much info regarding foods and vitamins and which things help with boosting iron and which things can hinder. He is also very knowledgable in how iron affects our entire system and which bodily organs/functions can stop working effectively if our iron is too low. He also works in conjunction with a couple of other doctors who specialise in particular fields and a professor at Sydney University whose field it is to discover why some people can't absorb iron no matter what. He hasn't sold me any thing which i felt he was selling me just to make money out of me. He feels my iron levels are the root of all my problems and simply put me on a strong iron powder, which had a few other things in it, plus complex amino acid pills to help better absorb vitamins and minerals in my diet, of which one is lysine as it helps increase the blood levels of ferretin.

Unfortunately for me, my iron still wasn't going up the way it ought to have and we have now moved to trying iron injections. He has had me do a very thorough blood test too and he has an extremely good knowledge of correct levels, which the pathology people simply over look and he has set new/correct targets for my thyroid, vitamin D and my SHBG hormone test is also a fair bit out (i'm having problems correcting my monthly cycles too). Dont know whether the iron has affected my hormones or whether that is a seperate issue at this stage.

As for extra hair on arms/face etc. I have not noticed any changes. I know certain drugs/pharmaceutical meds can have a side effect of extra hair growth in areas you do not want it, eg: my mum began growing extra hair on her previously hairless arms after going onto a calcium supplement.

Have you had your thyroid thoroughy checked out? Sometimes the hair loss can be thyroid related. My thyroid was viewed as being fine by pathology as i fell within the "range", but my levels are heading towards hypothyroidism. Even if your blood test shows you are ok, if your levels are a bit out you can have side effects from this. This is why it's important to have a good doctor who doesnt simply pass off your blood test results as being ok just b/c your results fall in the pathology "range". For some things this might be ok, but there are a number of things on blood tests that need to be above or below a certain figure and not just fall within the "range".

With my blood test he checked my liver function, magnesium, iron levels, folate, B12, full thyroid function test, hormones (SHBG, FAI, testosterone), zinc, vitamin D and copper.

As my Trichologist said, there are no super quick fixes for most people with low iron stores and that it can take a while to correct. For some reason in the last couple of months i have seen more baby hairs sprouting out all over the place and when i tie my hair back the baby hairs stick out and it looks as though i've had an electric shock!! I dont know whether this is simply the new growth that grows in over the winter months or whether it's due to the stuff i've been taking. Time will tell i guess.

I hope i've answered some of your questions.

Best of luck and keep us posted how you get on :)

clairenichols01 08-01-2007 10:10 PM

Re: First Iron Injection Today
 
Thanks for all of that info. I to oam scared of the summer as I am afraid all the growth will be taken away by the heat!

My iron is low and zinc is low but not low enough for the doc to allow iron injections I have tried: accupuncture, chinese herbs, natropath, iron, zinc supplements, trichologist- menoxidol and am taking aldactone. I have aquired female allopecia- (baldness) I just want to be normal again! I am only 27 and I get depressed about it- people without this condition don't realise how stressful it is to not have hair- it makes such a difference. I had very thick hair as a child and now it is so thin. I hate standing in the sunlight. Recently it got very bad and it fell out heaps- the main area seems to be the top and front of my hair so if I wear it up I can hide it to a degree but then it falls out more becuase it has been tied up.

If you have any suggestions please let me know. I am in Evans HD NSW but go to Sydney regularly.

Thanks for the support.

Audrey-B 08-02-2007 04:22 AM

Re: First Iron Injection Today
 
Hi Claire - I don't know what any of us would have done before the internet and boards like these. It really does help to be able to read what others have to say and what their experiences have been.

If you don't mind me asking, when they tested your iron levels last, what was your result for ferretin? The trichologist i have seen said that even alopecia can be brought on much earlier in life than it would normally occur (if you were to be predisposed to it eg: genetically) if your ferretin levels are low or have been low over a long period of time.

From reading other people's posts it appears that some doctors don't have an understanding how iron levels can relate in some people to more hair shedding than is normal. I know that there are other factors which can contribute to hair loss too, but if those other factors are pretty much ruled out and you know your iron is very low then it's worth building up your levels and keeping them there to see what will happen. Most doctors who understand will usually say that you should get your ferretin up to 70 and keep it there for 3 - 6 months, while other doctors will have a patient with a ferretin level in the 20's and will say that all is fine.

As for the iron injections, reading the pamphlet which comes with the injections it states that the injections can't be given to people with a number of conditions eg: low b12. Your doctor is possibly right in not going ahead with the injections which if administered incorrectly can have very bad side effects. On the other hand there are doctors who think injections are extreme and don't think it's necessary, when in fact they could be of benefit.

The only advice i can give is not to quit. I can honestly say that the only doctor who was of benefit to me and had what i felt to be a high degree of understand was the Trichologist. I went to a dermatologist, which was a waste of time. Later i found out that not ALL dermatologists are qualified in the hair loss department, only a small number of them are. Going to the Trichologist was a last ditch effort as i felt i had exhausted all my other avenues. I found the one i go to over the net. I did lots of research, phoned a few of them, asked questions and at the end he seemed most genuinely interested and knowledgeable, but then he does also have a medical background and isn't just one of those people who did a short term course and are in it for the money. Well that's my personal view on how he appears to me anyway. He works at Glebe and at Sutherland. He is at Glebe 2 days per week. I don't think we can give phone numbers on here, but if you look him up on the net it gives his contact number. Often you have to leave a message and he phones you back. If you are really worried it might be worth phoning and explaining your situation and he can tell you what he may or may not be able to do for you. I can't give any guarantees as your situation is a little different to mine.

As for your zinc and iron, they are both important, but i wouldn't be taking a zinc supplement at the same time as you take an iron supplement as the zinc can cancel out some of your iron absorbtion. Best to take them a number of hours apart.

If i think of anything else i will post it on here. I know it's hard not to stress, but stress wont be doing any good. Your best bet is to keep up with the research and find out what can/t be done and then work with that. All the best :)

clairenichols01 08-02-2007 05:44 PM

Re: First Iron Injection Today
 
Thanks again for the support- today is a bad day for shedding it's getting hot 28 degrees and I have already counted about 100 hairs in 4 hours!

I will ask my doc to check my ferriting levels.

I will cease the zinc. Do you see Tony Pearce? I also see him and use his minoxidil, shampoo etc.

Have the iron injections helped? Tony requested that I get them too but the doc wont do it.

Thanks again.

Claire

Audrey-B 08-03-2007 02:30 AM

Re: First Iron Injection Today
 
Hi Claire - Yes i see Tony Pearce too. He really new his stuff so that is why i selected him over any other Trichologist. I even phoned the Trichologists Association and the lady on the phone wasn't helpful. Tony gave me the Complex Amino Acid tablets plus an iron powder which had a few other things in it too. My ferretin went up a bit, but should have gone up more. I'm still taking the Amino Acid tablets as they contain Lysine which benefits people with low iron, but have stopped taking the iron powdered supplement as i'm on the injections. My next blood test should show good ferretin levels hopefully, but i'm scared of my ferretin levels dropping again after ceasing the injections.

I think you should find out your ferretin level first. If you are low in zinc i wouldn't advise giving it up. If you haven't already, you should probably have a thorough blood test and show it to Tony Pearce. He can then advise you on your levels and how best to take your supplements. If you are on an iron and a zinc supplement, simply dont take them together, take them a few hours apart so they wont affect one another and your body can still absorb them.

If Tony Pearce has suggested iron injections has he seen blood test results? If so, your ferretin levels must be on the tests as i dont think he would suggest injections without seeing any type of results. As for your gp, if he/she wont do the injections did they say why they wouldn't do it? If they didn't give you a reason why, i would find another gp. I dont waste time with doctors who wont do the right thing by me as i have wasted too many years trying to fix this problem. I have only recently begun seeing the gp who i see now and after checking certain things on my results he agreed to do the injections automatically and he is only in a medical centre and doesnt have his own practice.

The worst thing you can do is stress and count your hairs each day. For now all you can do is use the treatments you have been given, get answers out of your doctor or find a new one, try and keep calm and perhaps you can visit the hair section of the Healthboards to see whether others have found anything which has helped them. There are an amazing amount of people on here who are losing hair for a variety of reasons, but we can't give up hope.

FLFLOWERGIRL 08-04-2007 06:36 AM

Re: First Iron Injection Today
 
Tony gave me the Complex Amino Acid tablets plus an iron powder which had a few other things in it too. My ferretin went up a bit, but should have gone up more. I'm still taking the Amino Acid tablets as they contain Lysine which benefits people with low iron, but have stopped taking the iron powdered supplement as i'm on the injections. My next blood test should show good ferretin levels hopefully, but i'm scared of my ferretin levels dropping again after ceasing the injections.

Audrey--I also have a low Ferritin and my hair is falling out since. I read an article on the net that said 1.5 - 2 g/daily for 6 mo. to iron supplementation. This increased iron stores and decreased hair loss by one half. That sounds good to me! I was wondering how much L-Lysine that your Doc gave you? Also, do you take it at the same time as iron or just each day?

I went to my Hematologist the other day, he said it was not related to Ferritin levels it might be a male balding pattern:mad: He also said a lot of other things to me that just aren't right. I don't have to go back for 6 mo.'s or I would change doctors. I plan on being well by then anyway, it's been 7 mo's now. My Ferritin is at a 9 now.

The same thing happened to my sister she had GB SX and had a 41 Ferritin, her hair thinned a lot. When it went up after 1yr. her hair came back in thick again but curly.

I read that the the hair is made up of Ferritin cells, that is why your hair falls out. Your body knows that it is empty and goes after the Ferritin. I didn't know that until now. I'm going to send this information to my Doc next week and ask his opinion as well. That ought to be good!;) Thanks in advance! FLFLOWERGIRL

Audrey-B 08-05-2007 03:53 PM

Re: First Iron Injection Today
 
Hi FLFLOWERGIRL - The complex amino acide tablets contain lysine and i think the other ingredient is glutamine. I think the tablets were 50mg (they have changed the labels on the new bottles and as they are only repeats i dont get the same info on these new bottles as i did on my original bottle which i stupidly threw out!!) Lysine is good for people with anemia or low iron, but glutamine is the primary fuel for the growth of immune cells, especially intestinal lining cells. You might think this doesnt have much to do with low iron levels, but a lot of us with this have a lowered immune system. Anyway, i take one of these tablets 20 minutes prior to breakfast and prior to my dinner on an empty stomach.

Ferretin of 9 is still very low. It took my a year to get from 8 to 29 using over the counter iron supplements and then the supplements from my Trichologist, but then i went back to 26 and couldn't move up any further so after checking that certain other things on my blood test were in order he ok'd the iron injections which he said are much faster than taking the supplement which didn't seem to work for me as it did for others. He wants my ferretin over 70 and hopefully up to 125.

The trichologist did say that long term anemia or very low ferretin levels can bring on alopecia much sooner than you are supposed to get it (if you are predisposed to getting it that is), but then it can cause other things like your thyroid to get out of line too, which can also cause hair loss.

At the end of the day i'm only focusing on getting my iron levels up as there doesnt seem to be anything else to treat. After i've finished my injections if i start dropping again then they will look into why this is happening.

alice3724 08-05-2007 07:32 PM

Re: First Iron Injection Today
 
[QUOTE=Audrey-B;3089891]Hi all, just thought i'd post about my experience on getting my first iron injection (not to be confused with infusion).

I had my first of five injections today and it was such a relief. First it took the chemist three weeks to get the iron from a supplier and then my doctor was sick last monday and this monday. I began to think i'd never get the ball rolling. I had psyched myself up to think that it would hurt a lot, but once it was done i thought "is that it!!!". He then applied a small bandaid and said i can go home. I guess some doctors are good at giving injections, drawing blood ect, while some aren't and cause a lot of pain and bruising. This doctor definitely knew how to give an injection considering i hardly felt a thing. So if you hear horror stories about how painful iron injections are then i'd say it all comes down to the actual doctor doing the procedure.

The only thing i had done wrong was that i had gotten off the surgery bed too quick plus i'm getting over a winter virus and i had lost my appetite and my stomach was empty. As i was walking through the surgery to leave i had an overwhelming feeling that i was going to faint. Sitting in a chair with my head bent forward doesnt work for me, i need to lay down horizontally. Somehow i got to my car and passed out on the back seat and within minutes i was fine.

That was 7hrs ago and the only thing i can feel is the typical pain in the muscle you get when you have had an injection. The injection is in the upper bottom cheek area and that area is always iffy when getting injections.

As i've still got the flu it's difficult to tell whether i feel any different at this stage due to the injection. Will post again next monday when i get my next injection.[/QUOTE]

alice3724 08-05-2007 07:37 PM

Re: First Iron Injection Today
 
[QUOTE=alice3724;3138622][/QUOTE]

I also start my very 1st infusion or injection, not sure which yet all i know i ill be in my docs office 2 hours they said ..I'm alittle nervous about side affects but i know i have to do this my ferritan level is at 6 and 3 months ago it was at 5. Any words of wisdom thanks Alice:angel:

FLFLOWERGIRL 08-06-2007 06:58 AM

Re: First Iron Injection Today
 
Audrey--Thanks! I'm going to check out the Amino Acids I actually have a book on them. I'm just not sure what and how much to take. Have you heard anything about Biotin, known as vitamin H or B-7? Interesting about the cells in the intestinal lining. I know that mine are shot from all this iron intake! It is a shame we have to resort to the Internet for information. Although I do love it! I was told by all Docs to STAY OFF!!

I have been to many Docs and none have really helped me to this point. I have been going through this way too long. First they took me off iron because of a reaction to another kind. Then back on a new one with food. Then half the dose with food. That is when I really did my homework. Then told just to get it through my diet. That really scared me because I know that I need a large dose from what they told me. My numbers responded very well in the beginning and I knew that. So I never gave up, I wanted too really bad. I went back to 2X daily on an empty stomach. It was much easier this time because I was no longer sick from the first iron. What a blessing! I take 300 mg of poly iron. I raised my HGB to 12.9 finally, from originally 8.5 and my Ferritin was 2 and now 9. I know that isn't that good but it is going up. My HGB goes up 2 points per month now :). I'm just now starting to feel better. So, I am no longer anemic!

I wish I was seeing a Tricologist but I can't bare to see another doctor. I hope that I am not predisposed to alopecia. I really think that it is my body screaming for Ferritin. I'll let you know in a yr.! Lol! I am Hypo though, they say that my number is okay in range. I'm not sure where I should be with that??

I was told to continue for 6 mos. and come back to check levels. I am also focusing on getting the Ferritin up as fast as possible. I was wondering that if you were to stay at a higher HGB would the iron go into the storage at a faster rate? I asked for injections at the Hematologist he said no just IV. My GI doc said no IV just injections. Then when my numbers went up there was no choice but supplements. You are lucky to have such luck so far with your injections. I hope that your ferritin goes up now. Good luck and keep us posted. Thanks again for the information, it really does help. FLFLOWERGIRL


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