Hello everyone!

I'm new here and hoping that someone can help me.

I've just been diagnosed with Microcytic Anemia and referred to a Hematologist for further treatment.

Here's the background:

I've been having terrible pain all over my body. Burning shock sensations, aching in my joints, muscle weakness, numbness, headache/migraines, fatigue, and general malaise. I say PCP who took blood and everything came back normal. Had an MRI for MS, negative. Sent me to a Neurologist who tested me for nerve damage and ran blood because I have RA. He surmised that because my RH factor was 56.5 it was my RA that was causing the pain and Neurapathy. He also said that the results were inconclusive for Lupus but feels that I have Lupoid symptoms.

K, then went to Rheumatologist who then said that he only treats RA when the RH factor is 80 and over (mine is 56.5). However, he made a big deal about my anemia. Well, I've been anemic for years because I suffer from severe Endometriosis and Adenomyosis, Fibroids, and ovarian cysts. I've taken iron pills over the years, not steadily, but have taken them.

So based on my hemoglobin/hemocrit numbers he diagnoses me with Mycrocytic Anemia and says I need to see a Hematologist who will probably give me either a transfusion or shots of Interferon. He also says that this is where all of my pain is coming from due to lack of oxygen getting to my bone marrow and organs.

Does this sound right to any of you????

Sorry so long, but just wanted to give as many details as possible.

Thanks for your time. I welcome all opinions.

Danielle

^Bump!

Anyone? Please?

It's very hard to say. I have had iron deficiency anemia and have never had symptoms to the degree that you describe.

I suppose that if your anemia was severe enough (you didn't say what your levels are), that it is possible. Also, given that you have some autoimmune issues, I'm sure that they get very exacerbated when something else goes wrong.

Hi there. Thank you for responding. I don't have my full levels, but I do know that the Rheumy said that my hemoglobin (?) is at a 6. He wouldn't be worried if it were 10, or 11 but that 6 was 'ridiculous' lol

Hi there. Thank you for responding. I don't have my full levels, but I do know that the Rheumy said that my hemoglobin (?) is at a 6. He wouldn't be worried if it were 10, or 11 but that 6 was 'ridiculous' lol


Oh wow! Yes, a 6 is very bad. You are close to needing a blood transfusion! I would agree then that this is probably causing all of your pain.

Krstne--Yes, your HGB is very low. I can't imagine what your Ferritin must be if you have been this way for years. Have they ran this test for you? When will you get to see a Hematologist? My PCP said that when you're HGB is at a 7 is when you need a blood transfusion. So, it looks like your overdue.

Your post was very interesting to me because I have been having similar symptoms as you since Jan. when I was DX'ed with anemia HGB 8.5 and Ferritn 2. I was very ill shortly after beginning iron supplements. I went to the same doctors and still have no answers but have same symptoms. I always thought that this is somehow related to low Ferritin but the Hematologist says no. Let me know what you find out. I haven't heard of anyone having (some of) these symptoms unless they have a B-12 deficiency. That is not my case my B-12 is high. Did they check that Vitamin for you? Feel better soon. Keep us posted! FLFLOWERGIRL:)

Hi Flower and Chrisine-

I don't know what my Ferritin is. No one has mentioned my B-12. Thankfully, I called around this morning and got an appointment with the hematologist for next Tuesday. I'm going to call my Rheumy and get copies of my blood faxed over. When I get the copies, I will let you know better details.

The only I do know, is that this pain is zapping everything from me. Im in bed most of the time, and the nausea is almost unbearable. The funny thing is, I've taken supplements over the years. Not steadily mind you, but obviously not enough. I also have a great diet, eat lots of fish and leafy vegetables, don't smoke or even drink much alcohol except for the occasional glass of red wine. So I thought I was doing the right thing. I guess I misjudged feeling ok? I don't even have a pica for pete's sake. I don't chew ice, my nails or anything. So what else was supposed to stand out to me to let me know I was in trouble prior to now?

I just hope there hasn't been too much damage done to my organs. At least I know that my liver function is ok.

Arrrgh. I'm so frustrated. So glad that I found this board.

I will definitely keep you guys posted and keep you in my thoughts as well...

Danielle

Danielle--I'm glad that you were able to get an apt. so soon, usually it takes a lot longer to get in. When I was DX'ed with anemia the first thing they did was a B-12 and Folate test because quite often you can be deficient in both. I'm sure the Hematologist will run your Ferritin and B-12 if not done already.

I was nauseated for 6 months everytime my feet hit the floor, reminded me of being pregnant. I found that sips of water helped with this. They put me on Xanax because I started to have anxiety (from the anemia) when I would go to doctors. That also helped with muscle spasms in my neck and tingling in my face so they kept me on it. When I saw the Hematologist he said, there is an anti-nausea property in it, so I stayed on it for 6 months, the lowest dose. Of course I don't recommend this, it just worked for me and my situation. It's hard to say what symptoms are from what?

It sounds like even though you had a great diet that blood loss is the problem. You don't have to have a great loss just a monthly loss and it ~slowly~ over time causes the Ferritin to run out/low, which is your iron storage. I had to have an Ablation in June to stop mine. Also, that glass of red wine washes out the iron, white wine enhances the absorption. I did chew ice but couldn't believe that it was from anemia, now I know for sure. The Hematologist said that when you have a blood loss problem that it is so slow that your body gets used to it and you don't realize that it's even happening because this takes years to do. I felt fine at a 8.5 HGB, it was later, in the long-term that my symptoms began. I would recommend now that you begin a GOOD multi-vitamin to help build new red blood cells and drink lots of water, this helps too. I hope that you are on supplements now? Feel better! FLFLOWERGIRL:)

Danielle--I'm glad that you were able to get an apt. so soon, usually it takes a lot longer to get in. When I was DX'ed with anemia the first thing they did was a B-12 and Folate test because quite often you can be deficient in both. I'm sure the Hematologist will run your Ferritin and B-12 if not done already.

I was nauseated for 6 months everytime my feet hit the floor, reminded me of being pregnant. I found that sips of water helped with this. They put me on Xanax because I started to have anxiety (from the anemia) when I would go to doctors. That also helped with muscle spasms in my neck and tingling in my face so they kept me on it. When I saw the Hematologist he said, there is an anti-nausea property in it, so I stayed on it for 6 months, the lowest dose. Of course I don't recommend this, it just worked for me and my situation. It's hard to say what symptoms are from what?

It sounds like even though you had a great diet that blood loss is the problem. You don't have to have a great loss just a monthly loss and it ~slowly~ over time causes the Ferritin to run out/low, which is your iron storage. I had to have an Ablation in June to stop mine. Also, that glass of red wine washes out the iron, white wine enhances the absorption. I did chew ice but couldn't believe that it was from anemia, now I know for sure. The Hematologist said that when you have a blood loss problem that it is so slow that your body gets used to it and you don't realize that it's even happening because this takes years to do. I felt fine at a 8.5 HGB, it was later, in the long-term that my symptoms began. I would recommend now that you begin a GOOD multi-vitamin to help build new red blood cells and drink lots of water, this helps too. I hope that you are on supplements now? Feel better! FLFLOWERGIRL:)

Hi There, just adding my bit. I also have mycrocytic anemia, have been living with anemia symptoms such as chest pain, palpitations, hair loss, bones dull- aching, nausea, shakes, no concentration, memory loss, bumping into and dropping things, ringing ears, anable to warm up [which is absurb as I live in the tropics], eye sight failing ect. ect. As I am totally over feeling this way I convinced my Dr to start testing for anything that has anemia as a symptom. After a colonoscopy, gastroscopy, ECG, chest xray, breast screen mammogramme and upper abdominal ultrascan, a pelvic ultrascan showed ovarian cysts, right ovary 180mm x 85mm, left 75mm x 85mm, had a total hysterectomy but still have the anemia and now have gastroparesis, I feel like I'm in a warped card game, throw out this, pick up that. Because taking iron supplements make me throw up and sometimes cause stomach tears I stopped taking it but am getting worse so have started again with 5ml doses which I can tolerate, I will gradually build up to the 30ml dose, 5ml at a time each week. I am lucky that I dont have children to care for or have to go to work, my heart goes out to anyone in that situation. I do know that anemia is not an illness in itself but a symptom of another, it is also known as a silent killer, because left untreated it will bring on other deadly problems such as heart disease, diabetes and cancers. So don't stop looking untill you find what is causing it.

While I'm saddened that there are other people experiencing symptoms like mine, I have to say that I feel much less alone. Thank you to all that have written and shared. This situation is so messed up.

I've actually had 2 Endometrial ablations, cysts removed and or/ ruptured on my left ovary, had my uterus cauterized, been on the Lupron shot and tried a bunch of low dose birth control pills (i had a stroke many years ago). I was diagnosed with Adenomyosis after last surgery. My gyno refuses to perform a hysterectomy because she thinks that its too drastic a move.

Is she kidding me?!?!?!

Tropical Girl, I'm noticing that i don't handle the cold as well as I used to, and I love the cold. Im not a heat girl at all, now the air conditioning irritates me after a while and my bones ache. By the way, what is gastroparesis?

Sigh........

Your ferritin is less than 1.

Hi There, just adding my bit. I also have mycrocytic anemia, have been living with anemia symptoms such as chest pain, palpitations, hair loss, bones dull- aching, nausea, shakes, no concentration, memory loss, bumping into and dropping things, ringing ears, anable to warm up [which is absurb as I live in the tropics], eye sight failing ect. ect. . . . I do know that anemia is not an illness in itself but a symptom of another, it is also known as a silent killer, because left untreated it will bring on other deadly problems such as heart disease, diabetes and cancers. So don't stop looking untill you find what is causing it.
What?! What makes you think anemia leads to heart disease, diabetes or cancer? Not quite. Your heart just plain shuts down. Congestive heart failure. How could you have heart disease if you're not eating meat? It's not very likely.

Krstne--My GYN stated that If the ablation doesn't work (the first time) then the next step is to take it out. I don't understand why your doctor wouldn't do that for you in your position? If your anemia is a result of female issues then there should be no question. Have you tried a second opinion? FLFLOWERGIRL:)

What?! What makes you think anemia leads to heart disease, diabetes or cancer? Not quite. Your heart just plain shuts down. Congestive heart failure. How could you have heart disease if you're not eating meat? It's not very likely.


Not to go off topic here, but genetics play a huge part in heart disease, high cholesterol, high blood pressure and so on. Both of my parents had severe hypertension, high cholesterol and heart disease. My dad died of a massive coronary at the age of 49. I was just diagnosed with high blood pressure WITH the great diet I have and my cholesterol is 149. BUT I'm also a 35 year old black woman. Race also plays it's part. There are several factors for heart disease.

According to the American Heart Association, anemia worsens heart disease.

'Hemoglobin (Hgb) is the major substance in red blood cells, and its level indicates the blood’s ability to carry oxygen throughout the body. Studies have shown that low hemoglobin, which may result in anemia, is more common among patients with heart failure than it is among people in the general population. As many as 25 percent to 60 percent of heart failure patients have anemia, defined as hemoglobin less than 12 grams/deciliter in women and 13g/dL in men.' - American Heart Association Journal Report 2005


So at any rate, we need to eradicate Anemia so that it doesn't exacerbate any other preexisting conditions, or create an environment within our bodies to make us more susceptible to other illnesses.

I had a higher BP when I was very anemic. When I went to a doctors apt. I would have anxiety (from anemia) and my BP would SPIKE. They started me on BP meds and that made it too low so I discontinued meds. I have never done this in my life. After the anemia resolved my blood pressure went back to normal. Were you DX'ed after anemia? FLFLOWERGIRL:)

I had a higher BP when I was very anemic. When I went to a doctors apt. I would have anxiety (from anemia) and my BP would SPIKE. They started me on BP meds and that made it too low so I discontinued meds. I have never done this in my life. After the anemia resolved my blood pressure went back to normal. Were you DX'ed after anemia? FLFLOWERGIRL:)

I was DX'ed after. My doc put me on blood pressure meds and it's been fine since- that was 2-1/2 weeks ago. It was at 163/108. The silly thing is that my pcp who ordered my CBC said 'you're a lil anemic' and that was that. It was the rheumy and neuro that were alarmed about my hemoglobin and such.

Sounds like you at least have two good doctors anyway. That PCP needs to get the lecture for a 6 HGB and 7 is transfusion.

My BP was 165/100 but it only did that at the docs office never stayed there with a 144 and 130 pulse rate. Maybe this is a temporary situation for you due to your anemia. That is what they told me and it did go away. I'm back to 120/80 thank goodness! FLFLOWERGIRL:)

Hi there. Thank you for responding. I don't have my full levels, but I do know that the Rheumy said that my hemoglobin (?) is at a 6. He wouldn't be worried if it were 10, or 11 but that 6 was 'ridiculous' lol
Thanks for explaining that. And good luck with that--- if you can stand up.

Ok so, I got my lab results from the PCP today, and it says the following:

As of 9/17/07

Ferritin 3
HGB 10.1
Iron Saturation 5 (range 20-55)
Hemotacrit 31 (range 34-45)
RDW 16.4 (range 11.5-14.5)


Don't have the copies of the blood from the Rheumatologist. All he said was that my HGB was down to 6, that's when he said to see the hematologist.

Does anyone have an opinion on these?

OKay, I thought that you said that your HGB was a 6? Now it is a 10.1? That's good if it is though because your closer to 12 which is the anemia point. You can probably fix that soon. The doctors usually go by the HGB and HCT to determine anemia so when those two are below range your anemic. When the ferritin is below 10 you have empty iron stores. My Hematologist said that when it is below the range it doesn't matter what the number is you still have no iron. 3 Ferritin is no storage to speak of, I was a 2. That takes up to a year to fill. You have to stay on iron supplements for a long time or IV whichever your doc decides. Where did the 6 HGB come from? You need to get copies of that lab and read for yourself. At the range you are now you don't need to see a Hematologist if you can take supplements. Good luck to you. FLFLOWERGIRL:)

OKay, I thought that you said that your HGB was a 6? Now it is a 10.1? That's good if it is though because your closer to 12 which is the anemia point. You can probably fix that soon. The doctors usually go by the HGB and HCT to determine anemia so when those two are below range your anemic. When the ferritin is below 10 you have empty iron stores. My Hematologist said that when it is below the range it doesn't matter what the number is you still have no iron. 3 Ferritin is no storage to speak of, I was a 2. That takes up to a year to fill. You have to stay on iron supplements for a long time or IV whichever your doc decides. Where did the 6 HGB come from? You need to get copies of that lab and read for yourself. At the range you are now you don't need to see a Hematologist if you can take supplements. Good luck to you. FLFLOWERGIRL:)


Hi Flower-

This test was as of 9/13. I saw the Rheumatologist friday the 28th, HE was the one who said it was at a 6. Those are the tests that I don't have copies of. Sorry for the confusion!

Either way, it still makes no sense how I could go down that low in what... 15days? I have the appt with the hematologist on Monday he was sending the file over to. So we will see, I still want to go to see what this doc says since this is his field. Maybe then I can get definitive answers and move on!

I agree, I don't believe your test results can change so quickly? At least your recent numbers are much better than originally posted. Good luck with your Hematologist apt, on Monday. Keep us posted! FLFLOWERGIRL:)

I agree, I don't believe your test results can change so quickly? At least your recent numbers are much better than originally posted. Good luck with your Hematologist apt, on Monday. Keep us posted! FLFLOWERGIRL:)

Hi Flowergirl-

How are you? I hope you are doing well..... Today was my first treatment of IV Infed. They gave me benadryl and prednisone as a precaution against a reaction, and then the Infed. All in all not a bad experience, I'm just really tired right now. The hematologist says that I will be on this for 4 to 6 weeks with the goal of getting my ferritin up from a 3 to 100! Which sounds ludicrous to me, but we'll see. I asked him about a tranfusion and he wanted to give the Infed a chance to work first. He also told me that I absolutely have to resolve my endometriosis issue or else I will continue to have to get the fusion. He explained that I was bleeding out more than I could swallow in a supplement, as my periods are 7 days and longer.

So my husband and I have an appt with a reproductive endocrinologist to get an opinion. I've been holding off on this for a long time, because I've been afraid of getting a second opinion agreeing with a hysterectomy. But now, I HAVE to go. Depending on what he says, we have some decisions to make.

But one step at a time. It's all a bit overwhelming and confusing.

So that's that.

Danielle--Glad to hear that you are doing well with your first infusion, I wish you luck with all of them.

I'm curious what was the reason for your Hematologist to infuse you? Low Ferritin? Your numbers weren't so bad. Getting your Ferritin up to 100 sounds good to me.

I understand it must be hard to make the "H" decision. It took me at least 6 months before I decided to have an ablation and I have kids. My anemia resolved shortly after my procedure. Before that I would rise and fall, that was very scary.

Hope you are feeling better soon. Keep us posted. FLFLOWERGIRL:)