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  • I Need Help for My Extreme Anemia!

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    Old 07-05-2008, 06:49 PM   #1
    rana7
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    I Need Help for My Extreme Anemia!

    Hello:

    I have been anemic for several years now. I have tried several types of iron supplements, but nothing works. I also have an underactive thyroid, which I take Synthroid for. I also have a bad acid reflux. I have been on Nexium and Priolosec for more than 15 years.

    Recently, I had an endoscopy and I found out that now I have esophagitis and gastritis. I also recently had a colonscopy to rule out internal bleeding, and thank God, I didn't have any. After all these years, I finally went to see a hematologist and he did thorough blood work on me. My Ferritin level is only 4! My iron level is only 12. My TIBC is 510, which is high. My iron saturation is 2, which is low. And, my unbound iron capacity is 498, which is high.

    My doctor says to keep taking iron supplements, but I told him that I have tried everything and nothing is working for me. Because of my acid reflux, iron supplements bother me a lot. I asked him about iron infusions and he agreed to that. But, then I researched all about iron infusions and now I'm very scared about getting them because when I read about other people's stories, quite a few have had serious side effects. I'm a very anxious and nervous type of person. This coming Monday, I was supposed to go for my iron infusions, but I canceled the appointment. My folic acid and B12 are fine though I am very deficient in Vitamin D.

    The question I have is: am I right in worrying so much about getting iron infusions? For no apparent reason, I've gotten severe hives twice in the past two years and then the doctors had to give me Prednisone. That's why I'm so worried - is it a good idea for me to get the iron infusions? I also have arthritis. If anyone has any other suggestions, can you please let me know? If anyone knows about good iron supplements, can you please let me know? By the way, I'm almost 50 going through menopause, heavy bleeding, severe hair loss even though my thyroids are under control, and fibroids.

    Thank you so much.

     
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    Old 07-06-2008, 07:58 AM   #2
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    Re: I Need Help for My Extreme Anemia!

    my blood was 8.5 and ferritin was a 2 i did get 3 iron ivs but i have a really bad stomach myself you can find easy iron online it has b12 c and folic acid in them 28mg they dont bother me at all no constipation or stomch pain good luck

     
    Old 07-06-2008, 08:03 AM   #3
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    Re: I Need Help for My Extreme Anemia!

    rana7--Welcome to the board! Sorry that you are going through this too. Many of the people on this board are still trying to find out what and why. But we can help you a little and give support when needed.

    What I can tell you is that this was also my experience. I was scheduled for IV iron but I was so ill when I got there and my hgb was responding, not well at all. The Hematologist said since you are absorbing, no IV. I had a 2 ferritin and 8.5 Hgb. I don't think you said what your hgb was. Your Iron stats are very low especially your sat%. I am also Hypo-T and have taken PPI's for 8 yrs. Many of us have these things in common as well, interesting isn't it? Anyway, IV iron is not without risk and this was pointed out to me by two of my doctors, so I remain scared of IV. It IS a last resort effort and thank goodness we have options when necessary. I also tried irons that didn't work well for me but I was absorbing it. I am not sure what type, how much iron you were able to take, and how long, but all of these factors make a great difference in the outcome of oral iron therapy. At one point it took me 7 months to become non anemic because I was unable to take the proper amount of iron due to the fact I was still so ill from the first one I tried. Crazzzy, isn't it. There are many types of prescription strength iron and if not already, I would try a couple of those before I called it quits on oral iron. There are many different types of iron some for people that have a lack of Intrinsic factor in them to help with breaking down the iron to be absorbed and others have Vitamin C to aid in absorption. I would discuss this at great lengths with your Hematologist. I was prescribed Poly Iron 150 elemental iron, made for people that have to take iron on a long term basis and have GI upset. It is polysaccharide, NOT iron salts which is what is probably bothering you. I can even take it on am empty stomach which is required to get the maximum benefit. And for me there is no constipation which usually is my problem due to my thyroid. My B-12 and Folate were also normal high.

    With gastritis you can have bleeding and if you have fibroids causing heavy bleeding or anything, these things have to be fixed before anything at all is going to work for you. I wasn't sure from your post if these were factors or not at this time. I also had an ablation to stop my heavy bleeding and it worked but I still have a 41 ferritin and they say it's malabsorption from Nexium a year and 1/2 later. I hope I answered your questions. Don't hesitate to ask anything here. Good luck to you and keep us posted. FLFLOWERGIRL

     
    Old 07-06-2008, 05:39 PM   #4
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    Re: I Need Help for My Extreme Anemia!

    Hi FLFLOWERGIRL:

    Thank you so, so very much for replying to my post. Your post was very informative. You and I have so much in common. It's so nice of you to take that much time to respond to my post in such detail. I am so excited to try the Poly Iron 150. Is this on prescription? You are absolutely right that Nexium makes is very difficult to absorb iron. When I talked to my gastroentrologist about this, he always dismisses my ideas and says oh, don't worry..I would have to give you 14 Nexiums a day in order to prevent iron absorption.

    I will definitely keep you updated and if you happen to find out anything new, please let me know. Thank you again. Take Care.

    Rana7

     
    Old 07-06-2008, 07:55 PM   #5
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    Re: I Need Help for My Extreme Anemia!

    Rana7--The Poly Iron 150 is available OTC but it is within the pharmacy and you have to ask for it. It is not a prescription but is script strength and was prescribed by my GI doc. The same doc that said I was having malabsorption from Nexium. You do have to buy the whole box 100 count if it is not prescribed and is around $25.99. I had a year script in the beginning and only bought 60 a month. Now I buy 90 at a time but its so worth it and insurance does not cover this.

    If you want to try the Poly Iron you will need to call the pharmacy because sometimes they have to order it in. It only takes a couple days to get it if this is the case. My pharmacy keeps it in stock. The Poly Iron "Forte" is not the one you want because it has B-12 in it which is not necessary. I do however, take a good multivitamin to help in the rebuilding RBC's. FLFLOWERGIRL

    Last edited by FLFLOWERGIRL; 07-06-2008 at 07:59 PM.

     
    Old 07-07-2008, 03:51 AM   #6
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    Re: I Need Help for My Extreme Anemia!

    Hello neighbor!!!

    I understand your fears about the IV iron. I react to a lot of things and so i would not do in unless I as at death's door!

    I have no thyroid gland due to previous thyroid cancer, so I have the thyroid hormone regulation issues as well. I also take Prilosec and have since 1998. My anemia was mainly due to gastritis and stomach bleeding caused by, probably, to much use of NSAIDS. I cut those out completely and my iron is VERY slowly rising. I only take a low-dose iron supplement (1 Flinstones with iron per day plus one Chelated Iron which is 25 mg) because I also get the stomach issues. I would urge you to start with low-dose iron.

    Nexium/Prilosec can impact iron absorption but not completely. So you should be getting *some* from your food. But if you combine all factors such as gastritis, Nexium, and then maybe some heavy menstrual bleeding it all adds up. But not one thing is the responsible factor if you get what I mean?

    Try to find some low-dose iron in the meantime. I got mine at MOM's (My Organic Market). It does not bother me and I have the most sensitive stomach in the world. Flintstone's is very gentle too and you can take up to two of those per day (that will give you 36 mg). It will help.

    By the way, are you happy with the doctor who treats your thyroid? Mine has retired and I'm looking for a new endo in the Northern VA area.

     
    Old 07-07-2008, 07:36 AM   #7
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    Re: I Need Help for My Extreme Anemia!

    rana7--Before trying different types and amounts of iron as recommended here by any of us, I would as I stated in my first post discuss this with your Hematologist even if it's just a phone call. There is a certain amount of iron replacement that is needed with regular follow ups.

    If you are beginning one that is not made especially for the GI tract, I would do what Christine says, and always start out on a lower dose and raise it slowly according to what is well tolerated by you. Good luck to you. FLFLOWERGIRL

     
    Old 07-08-2008, 04:13 AM   #8
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    Re: I Need Help for My Extreme Anemia!

    Hi Rana - low iron and difficulty raising iron levels seems to be quite common when people have thyroid issues. I have Hashimoto's myself.

    You mentioned reflux.... i have read that certain meds which help with reflux and indigestion actually inhibit iron absorbtion. I've never been on these types of meds so don't know too much about them.

    On the digestive issue..... a guy i work with was put on prescription digestive enzymes and the reflux he suffered from has now gone.

    I'm on prescription digestive enzymes too as i'm not absorbing protein as my pancreas isn't producing enough enzymes. I also wasn't absorbing iron (it's ok now though), my vitamin D was below low as was my iodine (healthy iodine level is beneficial for the thyroid). This issue is related to my thyroid condition. You might want to look into this as you have the reflux issue and a thyroid condition.

    I don't know much about iron infusions as i had a series of 'injections' instead.

     
    Old 07-09-2008, 04:37 PM   #9
    rana7
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    Re: I Need Help for My Extreme Anemia!

    Hi Christine:

    Thank you for replying to my post. You asked about my endocronologist. Yes, he is good. I've been seeing him for a while. His name is Dr. Albert W. Coo He is located in Alexandria.

    Good Luck.

    Rana7

    Last edited by Administrator; 11-06-2013 at 09:13 AM.

     
    Old 07-09-2008, 04:55 PM   #10
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    Re: I Need Help for My Extreme Anemia!

    Hi Audrey:

    Thanks for replying to my post. I am so happy to have joined this site. Thanks to everyone's replies to my post, I feel very supported and I have gained so much knowledge. Lately, I have been reading that a lot of people are on prescription digestive enzymes, just like you mentioned. Is there a way I can tell if my pancreas is producing enough enzymes? I'm so excited to hear that your co-worker's reflux has been fixed by taking these enzymes. Do you know the name of the enzymes he took? This way, I can ask my doctor about them. And, if you could tell me the name of the enzyme you are taking, that would be very helpful.

    I was researching online about enzymes, and I found one good company named Enzymedica, but these are mostly just regular enzymes. Is there a relation between the pancreas not making enough enzymes and having low iron levels?

    Any information you can provide would be greatly appreciated.

    Thanks so much.

    Rana7

     
    Old 07-09-2008, 04:58 PM   #11
    rana7
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    Re: I Need Help for My Extreme Anemia!

    Hi FLFLOWERGIRL:

    I just wanted to say thank you again for all your information. It is very helpful. I have called several pharmacies in the area and found out that a couple of them can order the Poly Iron for me. I cannot wait to try it.

    Thank you again

    Rana7

     
    Old 07-09-2008, 06:16 PM   #12
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    Re: I Need Help for My Extreme Anemia!

    rana7--Glad to able to help. Will your Hematologist still care for you even though you are not having IV? Mine took care of me for a year without IV. I was just wondering how much he will prescribe for you to take. I was prescribed 2 daily for a year then 1 daily (the GI doc) he said I am married to iron. Even if you are going to take 2 start out on 1 for at least a week or two and see how things go because results are different for everyone. Someone was on here not too long ago taking 3 daily wow that's a lot. I wish they would have prescribed 3 for me a long time ago, I might not have gone through so much. I was on 3 daily Ferris Sulfate and ended up in the ER. At that time I told them I thought that I had internal bleeding in the esophagus but I didn't just felt like it. Wishing you the best. Let us know how you do with your new iron. FLFLOWERGIRL

     
    Old 07-10-2008, 09:19 AM   #13
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    Re: I Need Help for My Extreme Anemia!

    Quote:
    Originally Posted by rana7 View Post
    Hi Christine:

    Thank you for replying to my post. You asked about my endocronologist. Yes, he is good. I've been seeing him for a while. His name is Dr. Albert W. Coo and his phone number is ( removed ). He is located in Alexandria.

    Good Luck.

    Rana7
    Rana,

    Thanks. He is one of the doctors my other doctor recommended. I hate to keep bugging you but do you REALLY, REALLY like him? And how is his staff and office run? Long waits? Is it easy to get your lab stuff done with him or do you have to have an appointment all the time?

     
    Old 07-10-2008, 06:08 PM   #14
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    Re: I Need Help for My Extreme Anemia!

    Hi Rana - Not sure of the name of the enzymes my co-worker was on, but he said his were expensive and he didn't get many in the packet. He is on holidays now, i can ask him what brand they were when he gets back. I on the other hand got two contains, each one containing 100 capsules and it is called Creon Forte and was a reasonable price. Just remember, this product might be on sale in the USA, but under a different name. I'm in Australia. I'd say you can get this product in the USA as it's made in Germany. My enzymes are as close as you can get to the human ones and are made from Porcine pancreas (i think that means it comes from pigs?)

    My current and previous doctors have both said that a lot of people actually do have some degree of digestive problems which can be attributed to any number of things eg: poor diet, drinking too much just prior/during/straight after a meal as this washes away all the naturally produced enzymes, illnesses can cause lack of enzymes, getting older decreases enzymes and this is why older people generally should be on lighter meals, eating more frequently and certain foods don't agree with them, cooking/over cooking food destroys enzymes, not chewing your food properly, eating when calm is better rather than after an argument or when you are stressed as food wont get digested properly, skipping breakfast weakens the digestive system as our stomach energies are strongest this time of the day and the enzymes are all systems go. There are loads more things which affect enzymes and digestion, but you can look that up on the net.

    If you eat healthy, get enough sleep, dont skip meals and are pretty much doing everything right, then there must be another reason for poor digestion or low enzymes.
    In my case it's the pancreas not producing enough of only one enzyme which digests protein. My fat and carbohydrate digestive enzymes are exellent. My thyroid doctor ordered a stool analysis test to determine what was going on with my digestion. It's a great test as it shows up whether you have parasites, bacteria, yeast, digestive issues and what type of issues etc All i can say is that now i have no more major bloating after lunch and dinner and much flatter stomach without that "i feel 5 months pregnant feeling" Also i don't feel the need to eat like a horse, non stop 24/7. Now i eat normal meals and don't feel like i'm starving to death 30mins after eating a meal. This must mean that my system is feeling the effects of better digestion and hopefully absorbtion of more nutrients. Wonder if this means i will be off all these supplements one day soon. One can only hope.

    Basically there are 3 enzyme types, metabolic, digestive and food enzymes. Metabolic enzymes occur naturally in our bodies and encourage other bodily functions like eating, breathing, regulating metabolism etc Digestive enzymes are produced by our bodies and their function is to break down the foods we eat, metabolising and absorbing all the nutrients. If the pancreas is too weak and cant produce sufficient enzymes it takes from other vital organs and robs them of metabolic enzymes and once this happens it affects tasks such as thinking, talking, walking and even breathing. The last enzyme is food enzymes. The foods we eat help the digestive process. Raw fruits and vegetables, nuts and sprouted seeds are great for the digestive system.

    So there you go, insufficient enzymes lead to poor digestion, your system doesn't get sufficient nutrients therefore you can't absorb or have difficulty absorbing things like protein which in my case is likely linked to my hair shedding as hair is 98% protein. It most definitely would also result in poor absorbtion of anything from iron to vitamin d, zinc and whatever else your body needs to help it function.

    Both my doctors constantly see patients who have thyroid problems and have poor absorbtion rate of iron and other vitamins/minerals, digestive disorders, slow metabolism, hair shedding and messed up hormones. I first had the hair loss and messed up cycles, then later the low iron, then found out about the thyroid, then later i found out about my adrenal function and pancreatic problem. I thought each problem was an individual issue and it really depressed me. I kept thinking how can someone like me who eats and lives a healthy lifestyle have all these things wrong. I thought i was falling apart. Then through more doctors visits and doing more research i have found that so many other thyroid sufferers have very similar set of issues and that all the problems i have are not individual of one another, but are all linked to one another. It's sort of like "what came first, chicken or the egg". Guess i'll never know what broke down first within me and then caused the ripple effect, causing other areas to break down.

    My thyroid doctor believes a lot of the problems i have are fixable over time. He said it's a matter of getting to the root of the cause and fixing that as well as all the other things. He said there is no point simply taking iron supplements if the iron is simply a symptom of something else. Likewise there is no use taking thyroid meds if other things are wrong in the body and having an effect on the thyroid as then the thyroid meds wont work to full effect. I think he has a valid point in all that.

     
    Old 07-11-2008, 07:18 AM   #15
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    Re: I Need Help for My Extreme Anemia!

    Hi Christine:

    No, you are not bugging me at all. You can e-mail me any time you want. Dr. Coo is a very good doctor. I have seen two or three other endocronologists in this area, but I really like Dr. Coo. If you ever have questions about your blood results or you went to see some other doctor and they did some blood work on you and you want Dr. Coo's opinion on that blood work, you can call Dr. Coo and he will return your call the very same day. The office and staff are average. For the blood work, I always take the order from him and then go to the hospital because of my insurance. However, they have a lab facility in the same building. And, the wait is not that bad either - it's similar to the wait at other doctors' offices.

    Good Luck.

    Rana7

     
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