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Tifferzz- Sorry to hear about your trouble with the docs. I have had my share of that too. My endocrinologist wanted me to supplement with 325mg iron daily when my ferritin was 38 , so for sure I think your doc should get you started on iron supplements and then monitor your levels till you get in a good range. What the good range is seems to be subject to interpretation but I think 70 from my reading seems to be a threshold for real improvement. From what I have read alot of aches, pains and hair loss may be associated with low ferritin.
Also if you haven't had your vit d level checked it is a hugely important thing to do. My vit d was way low a 19, that was terrible. Vit d deficiency can also cause alot of aches and pains . You may want to check out the vitamin d council on the net. The phds and mds that are on the vitd council are world class scientists and affiliated with major universities. They think that proper vit d levels are critical for health and that deficiency can lead to greater chance of various cancers, autoimmune disorders , ms etc. etc. When my vit d and ferritin level increased I felt so much better. Much less of the aches and pains . Also I had leg pains at night for several years and they have just stopped. I am shocked. Because I moved the vit d and iron up at the same time, I won't ever really know which helped or whether it was the combination. In any event be sure to get your vit d level checked and do something about your ferritin.
I am hypothyroid due to hashimoto's autoimmune disorder and also have osteoporosis. I have to get these deficiencies dealt with to try to achieve a level of well being and health. I have burned through docs in this quest to get help. I am now finally feeling that it is coming together. So I know your frustration.
I think your gp is , according to what I have read, incorrect on not going by ferritin and instead just looking at blood panel for anemia. From what I have read anemia is the end point. Low ferritin will show you are moving in that direction. Which you are by the 20 ferritin number. So why wait till anemia. Others on this board will agree with this for sure. It is so hard and time consuming to get the ferritin up. To me, it seems your doc is not helping you but giving you frustration. Could you change docs??
On the B12 , I have supplemented for about a year. I take b12 in a multivit and also now take a sublingual(dissolves under your tongue) b complex tab with b12. All this contributed to a very decent b12 number on my labs, so maybe with supplementing you could bring yours up. From what I have read though some people have trouble taking in b12 or utilizing it due to some metabolic issue and thus can have pernicious anemia. I don't know if this would have anything to do with your situation. Maybe you should look at that as well.
Also I wonder about your extreme fatigue and weight loss. Something doesn't seem right. On your thyroid, what was your tsh level?? As to the weight loss, do you have any intestinal problems- cramping, diarrhea etc. Are you taking in enough calories?
Don't give up tiffer. You are going to need to push forward to get yourself the help that you need. We will support your effort here!
Tiffer-Yes maybe alot is due to low ferritin , b12 and possibly vit d. I think other's will say your docs view on the ferritin is bizarre! Ferritin is to me like the gas tank level, anemia is like out of gas. Why not get the ferritin up instead of waiting for anemia. You are probably aware that ferritin is a measure of your iron stores--thus like a gas tank.
I am no expert but the thyroid levels seem to look ok.Others at the thyroid board are probably better to respond to that.
And, yes your b12 needs help that's clear from your labs. Provided you do not have a problem with b12 metabolism, then b12 supplementation should help. But, if it is a metabolic issue then that would need to be looked at.
Also the ferritin issue is somewhat the same way. If your iron stores are low, then the thing is to find out why. I am a vegetarian so the thinking is that it is my diet. I did have an endoscopy and will soon have a colonoscopy to be sure no internal bleeding . So, when the ferritin level is low - the cause should be looked at. Maybe it is dietary, maybe it is not. Your doc doesn't seem to have any curiousity about it though. With your symptoms and labs a doc needs to sit up and take notice and get moving on it.
Since you had the b12 test done on your own, I think you should just do the vit d- it is called 25oh test. On the d , as with the ferritin, you do not want to be at the bottom of the range. Check out the vit d council - I believe it's something like 50-60 they recommend. We have talked before here about docs who let you sit at the bottom of the range --it just doesn't make sense.
You didn't say about your weight loss as to whether you have any intestinal issues that may account for the weight loss -any suspected bowel disorder??
Are you taking in enough calories??
It sounds like you are highly motivated to feel better- that is half the battle, now you need to get the docs to do their job. Can you change docs??
Thank you ALL for responding!! I greatly appreciate it.

Yes, from what I have been reading over the past day online .... Low B12 can cause a lot of health problems and a lot of permanent nerve problems etc. Too be honest ..... I never knew that people had B12 in their bodies. I have heard of B12 and knew it was like in Vitamins and stuff but did not know much more than that until after my results yesterday. The only reason I decided to have it tested on my own ..... was because when I went to the Endocrinologist last week, she said that my thinning hair could be from a lack of B12 and she told me to take a Multi-Vitamin and see if that helps with my hair. She never said she would test me, my family doctor never said anything about me being tested for B12 either. I am just so sick of going back and forth to the doctors, going to specialist and they don't know what is wrong with me .... so I took it amongst myself to order the B12 test online, and went and had it done earlier in the week. I am SO glad that I did.

I did fax over the results of those Labs. last night to my family doctor and also to the Endo. doctor that I went to. I have not heard anything back yet from any of them. I sent a letter to my family doctor along with the results and I asked her if they can schedule an appointment for me with a Hematologist. I hope she will. I wish I could call and make the appointment myself, but I can't .... even though I have PPO Insurance, the doctor has to call to make the first appointment, which really stinks!!

I was surprised at allllllllllllllllllllllll of the symptoms that you can have from lack of B12. I wish I would have known this sooner!! I have just about every single symptom from low B12 ..... at least from tons of websites I have looked at online. My symptoms match perfectly! I have been dealing with this for a year now .... all of these symptoms .... no one knowing what is wrong with me .... uggghhhh!! I just wanna be back to myself. I actually just ordered the Iron test online .... and another regular CBC. I have never had an Iron blood test done ... so we'll see what that turns out to be. I had a CBC done in June 2007, but everything was normal then.

I appreciate everyone responding. It does help reading other peoples stories and having other people respond back to me with their opinions and suggestions etc. It definitely helps me!!
Hi there Isis498, you are 100% right about that!! I have read online that doctors learn about B12 stuff and the side affects of low B12 on people during their FIRST year of Med. School. I guess these doctors just forget?? I am just sooooooooo glad that I took up for myself and paid to get my B12 tested on my own! I do have insurance ..... but paid for this on my own because it seemed like I was getting NO WHERE with all of these doctors and other tests. The only reason I knew about B12 was when the Endo. doctor said "well you could be low on B12, that could be why your hair is falling out". She SHOULD have tested me! I shouldn't have had to pay for it out of my pocket. But actually ... I am glad I did, otherwise I would be back to square one. Not knowing what is wrong with me! Now, everything is coming together!! I am so happy about that. I will be even happier when I am back to my old self. I cannot wait for that day!!!!!

Do the shots hurt when you get them?? How long does it take for you to start feeling halfway good again after the start of getting the shots? I have an appointment with a Hematologist on October 29th. Will be my first appointment with one. It was actually a funny story how I got the appointment, but I don't wanna bore anyone or right a REALLY long post like I always tend to do LOL.

I also just went today ... for a few more blood tests. I had another CBC done. My last one was back in June 2007. Then I have never had an Iron test with TBIC?? I think thats the name of it. So I got that and then I got another Ferritin level. My last Ferritin level was 21 back in August 2007. I should have the results back tomorrow. So I am curious to see what the Iron test shows.

I hope you start feeling better REAL soon Isis!! Ohhh and one more question for you ..... how often do you have to get the B12 shots? Thank you!! :)
[QUOTE=Tifferzz;3253769]Hi there Isis498, you are 100% right about that!! I have read online that doctors learn about B12 stuff and the side affects of low B12 on people during their FIRST year of Med. School. I guess these doctors just forget?? I am just sooooooooo glad that I took up for myself and paid to get my B12 tested on my own! I do have insurance ..... but paid for this on my own because it seemed like I was getting NO WHERE with all of these doctors and other tests. The only reason I knew about B12 was when the Endo. doctor said "well you could be low on B12, that could be why your hair is falling out". She SHOULD have tested me! I shouldn't have had to pay for it out of my pocket. But actually ... I am glad I did, otherwise I would be back to square one. Not knowing what is wrong with me! Now, everything is coming together!! I am so happy about that. I will be even happier when I am back to my old self. I cannot wait for that day!!!!!

Do the shots hurt when you get them?? How long does it take for you to start feeling halfway good again after the start of getting the shots? I have an appointment with a Hematologist on October 29th. Will be my first appointment with one. It was actually a funny story how I got the appointment, but I don't wanna bore anyone or right a REALLY long post like I always tend to do LOL.

I also just went today ... for a few more blood tests. I had another CBC done. My last one was back in June 2007. Then I have never had an Iron test with TBIC?? I think thats the name of it. So I got that and then I got another Ferritin level. My last Ferritin level was 21 back in August 2007. I should have the results back tomorrow. So I am curious to see what the Iron test shows.

I hope you start feeling better REAL soon Isis!! Ohhh and one more question for you ..... how often do you have to get the B12 shots? Thank you!! :)[/QUOTE]

When I first found my low level, I had to ASK for the test, my Drs. never even thought to do one, even with all the problems I was having. :( My Grandmother had PA and I wondered about it.

My hair is falling out too at the moment, bad. :mad: I hope it comes back.

The shots aren't bad at all; my DH gives them. I am on 1 a day for a week, then 1 a week for a month. Then 1 a month indefintly.

I have read, and also been told it takes up to 6 months or more to start to really feel better and neurological damage to correct itself. If you have had it too long, it may never correct itself.

Good luck to you, let us know how your tests come out.
Hi ALL, and thanks for responding Isis498, ChristineVA, and alaska_free, I appreciate it very much!! Isis, I heard that the B12 shots "sting" when they go in. Is that true? Also if that is true, how long does the sting last? I don't like watching needles go in me and even when I get my blood drawn, I look away. I am a baby LOL. I don't like things that hurt either .... BUT .... if the shots will help me get better .... faster ..... then I will do them definitely. The sooner I am back to myself .... the HAPPIER I will be. I am going to throw a BIG party when I am back to myself LOL. But .... before my party I want to make sure my old self is back .... (The OCD me where my house is spotless)!!! Clean my house, have my HAIR BACK, it is sooooooo thin right now, it makes me sad. My hair is straight ... and when I do it after I shower and I turn to the sides, I can see my ears through my hair. Like not my full ears .... but I can definitely see my ears. I hate it. I am soooooo ready to do things other than SIT all day long. I want my energy back. I am tired of sleeping 10 hours a day. I am tired of sitting in a chair, and I just fall asleep .... I don't even want to fall asleep but I get so tired sitting, that I just fall asleep. I want to be more into my daughter .... like I used to be. I used to remember everything .... ALL school stuff. I cannot remember things like I used to. I see her bring home a school paper. I keep it to the side and say to myself, "I need to remember this". Well, most of the time ... I forget. I have no energy to go to her sports games, which makes me REALLY sad. I don't think a lot of people TRUELY understand how dead tired this makes you. They think "oh she's just tired", but they have no clue. It's not that I am just "tired". I seriously cannot get up and do ANYTHING. But oh well, here I go into a long post again LOL ...... SORRY!!


As I was saying lol .... I was thanking all of you for responding and asking about the B12 shots stinging. Christine .... yeap my Dad told me about the B12 thingies that you stick under your tongue. I am hoping to do something like that after I see the doctor. I just wanna wait till after I see the Hematologist, that way he can tell me if I need the shots first to get my level up, or if I can just to something like under the tongue. I am thinking he may want to do the shots for a little bit since my level is pretty low. So, if he does the shots at first ... once I am regular, I will definitely do something like those things you stick under your tongue. I don't like the idea of getting stuck with a needle ALLLLLL the time, eeeekkkkk!! :(

Ohhh, also alaska_free, I wish I could just call my family doctor and get B12. But .... she has NOT called me back since my B12 results. She probably does not think that low B12 is a problem. She didn't think my low ferritin the other month was a problem. She said she doesn't go by ferritin levels since my CBC came back normal. But yeah, I did ask to have her call me, and a week went by, and no phone call back. Sooooo, that is when I took it amongst myself, to find a Hematologist. I called them and I said "can I set up an appointment on my own or do I need to have my family doctor do it". The lady was nice and said "normally your family doctor would call and set the appointment up IF you have never been seen by our office". I was like "Oh ok". Then the lady said "why, are you having a problem"? I said "well kinda". She then asked me what was going on. I explained to her that we have been trying to figure out what is wrong with me for the past year. I said we just found out last week that my B12 is low. The lady then asked what was the results. I said my results came back at 172 which was low on the lab report. She then said "have you had other blood work done"? I said yes. She said "how did that come back"? I said well I had some cortisol tests, they came back high. I said some of my hormone testing came back high and my testosterone was on the low side. I then told her that my CBC came back normal, and then I said my Ferritin test that I had done in August came back on the low side. She then said "what was your Ferritin level? I said it was 21. So, she said "can I put you on hold, I am going to call over to the lab and tell them about your B12 and Ferritin levels and I'll see what they say". I said ok. She came back on the phone and said "I talked to the senior lab tech, and he said that with your levels you do need to be seen, so I am going to go ahead and set up an appointment for you". I said ok. Then she said "call your family doctor and tell them you have an appointment with us and ask them to fax over all of your labs and physician reports over the past year". I said ok.

When I called the family doctor, I got a receptionist. I told her about my up-coming appointment. She was like "did we set this up for you". I said no, I have been waiting for the doctor to call me back but it's been a week and I haven't heard from her, so I called and asked if I could make the appointment on my own, and they said with my levels of low B12 and low ferritin that I need to be seen". The lady didn't sound to happy ... but oh well. I am tired of feeling this way. I wasn't getting anywhere before, so I have to do stuff on my own!! So, I am pretty sure the Hematology place set me up with the appointment for the first available appointment that they had available, and that was the October 29th appointment. Trust me ... I wish I could get in sooner!!

I know I am writing a book her ... sorry!! But ... I need to post one more thing. I just got my labs back from yesterday. I am going to post them here. My Iron stuff came back in the normal ranges! It's weird that you can have Low B12 and Low ferritin but normal Iron stuff. Here is my new blood work, ohh and my Ferritin level dropped since August too!

[B]October 11, 2007[/B]

[B]CBC With Differential/Platelet[/B]

WBC: 6.2 ------ Normal Lab Ranges: (4.0 - 10.5)

RBC: 4.43 ----- Normal Lab Ranges: (3.80 - 5.10)

Hemoglobin: 13.5 ----- Normal Lab Ranges: (11.5 - 15.0)

Hematocrit: 39.8 ----- Normal Lab Ranges: (34.0 - 44.0)

MCV: 90 ----- Normal Lab Ranges: (80 - 98)

MCH: 30.4 ----- Normal Lab Ranges: (27.0 - 34.0)

MCHC: 33.9 ----- Normal Lab Ranges: (32.0 - 36.0)

RDW: 12.8 ----- Normal Lab Ranges: (11.7 - 15.0)

Platelets: 336 ----- Normal Lab Ranges: (140 - 415)

Neutrophils: 36 - LOW ----- Normal Lab Ranges: (40 - 74)

Lymphs: 49 - HIGH ----- Normal Lab Ranges: (14 - 46)

Monocytes: 7 ----- Normal Lab Ranges: (4 - 13)

Eos: 7 ----- Normal Lab Ranges: (0 - 7)

Basos: 1 ----- Normal Lab Ranges: (0 - 3)

Neutrophils (Absolute): 2.2 ----- Normal Lab Ranges: (1.8 - 7.8)

Lymphs (Absolute): 3.0 ----- Normal Lab Ranges: (0.7 - 4.5)

Monocytes (Absolute): 0.4 ----- Normal Lab Ranges: (0.1 - 1.0)

Eos (Absolute): 0.4 ----- Normal Lab Ranges: (0.0 - 0.4)

Baso (Absolute): 0.1 ----- Normal Lab Ranges: (0.0 - 0.2)




[B]Iron and TIBC[/B]

Iron Bind. Cap. (TIBC): 333 ----- Normal Lab Ranges: (250 - 450)

UIBC: 258 ----- Normal Lab Ranges: (150 - 375)

Iron, Serum: 75 ----- Normal Lab Ranges: (35 - 155)

Iron Saturation: 23 ----- Normal Lab Ranges: (15 - 55)




[B]Ferritin, Serum[/B]

Ferritin, Serum: 10 ----- Normal Lab Ranges: (10 - 291)



* Thos Are My Latest Lab Results As Of October 11, 2007, Then My B12 Was 172 last week *

Sorry about the book I just wrote!! Just wanted to respond to those of you who posted, and give some answers and also post my latest labs. If you see anything or have any comments, PLEASE post them to me! Thank you!!

Tifferzz :)
Hello CTweet

There is a pernicious anaemia society where you can ask questions and will get answers. Other tests to see if you have pernicious anaemia (PA) are Intrinsic Factor antibodies, Parietal Cells antibodies and serum gastrin. If you have not had any b12 supplements, the MMA test is supposed to be accurate. The Schillings Test is not always accurate.

A b12 level of 112 is quite low. In my opinion you should be having loading doses of B12, that is once daily for 2 weeks then going on to twice a week, then once a week, and finally once a month maintenance. That way you will get your b12 levels up more quickly. It is essential to keep check on your folate and Iron levels as well.

Regards,
Cats
Hey all, I had my first appointment today with a Hematologist. They were all soooooooo nice here!! The whole staff was nice and the Doctor was really nice. I spent all but an hour and a half there ..... and it wasn't from long waiting. I first got there and signed in and all of that stuff then they took 3 things of blood from me. They did just a real quick CBC ..... it may not have been a complete CBC, but they ran the blood (the lab is right there at the office), so they ran the blood and by the time I went back to the room and the Doctor came in, they had run some of my blood for a quick work up. Those numbers were pretty much identical to the CBC I had just recently posted here. I think it's earlier in this thread.

Anyway ... this Doctor spent a lot of time with me, which I liked. He didn't rush us out, he took his time and went over everything .... all of my symptoms, all of my recent blood work etc. He said that my Iron Stores (Ferritin) are all but depleted. My Ferritin was at 10 a couple of weeks ago. I was sooooo happy to finally have a doctor care about Ferritin levels!! He had asked if I noticed any blood in my stool, and I told him I have been looking and haven't seen anything.

Soooo, since they took extra blood from me when I first got there, he is going to re-test my B12 and see where that is at. It was 172 a few weeks ago. He is also testing me for "Pernicious Anemia". The weird thing though is ... I thought they test you for "Pernicious Anemia" through a Urine Test?? I think it's called a Schilling Test or something like that?? Well, he said they are testing for "Pernicious Anemia" from the extra blood that I had drawn. Can they test for that with a blood tesT?? He also said they are testing like some kind of Antibodies and something to do with Gastric something or other?? They are doing it all through the blood that I had drawn. Does that sound right to those of you that have gone through this ?? I go back next Wednesday to get the results back from those tests that they are running.

My only other question is ..... does "Pernicious Anemia" also cause low Iron stores?? I am just wondering if my Low B12 and my Low Iron stores are from a related problem?? Or do you think they are two seperate things that we need to make sure the Doctor looks at? I mean this Doctor is nice and all so far .... but I want to make sure I am asking him everything I need to be asking and making sure he is testing for everything he should be testing for. This stuff is all BRAND new to me, so I am not totally 100% sure on it all yet.

Hopefully you all will re-read this post and can answer my questions, if not I will try posting a new thread about it. But if you all know anything about my questions, PLEASE post what you know. Thanks in advance for any help and suggestions that you can provide to me!! :)


Tifferzz
Tifferez,

This stuff is so overwhelming. I am still trying to piece it together. I think I finally went through that angry stage with my family dr.

The neurologist that I saw did the blood test that you are talking about. They are able to check the antibodies through the blood and they may be checking you for celiac (which deals with digestive system).

I do not know much about PA. I suspect I will be seeing the hematologist after they check my CBC this week. I have been getting bruises on my legs and I haven't hit them or bump them into anything.

I would ask your dr about your iron stores and low B-12. I would think that it might be connected because B-12 is responsible for blood and nerves. I think that your dr is covering all of the basis. The tough part is the waiting game.

Jennifer
Hello Tifferez,

The blood tests for pernicious anaemia are Intrinsic Factor Antibodies and Gastric Parietal Cells antibodies. These are not conclusive tests because only 50 per cent of people who have PA will have IF antibodies. So even if you test negative for IFA, you could still have PA. However, if you test positive for IFA, then it is conclusive for a diagnosis of PA. I know, confusing. Gastric Parietal Cells antibodies can be present in people who do not have PA but another autoimmune disease such as hyper/hypothyroidism.

My daughter was diagnosed with PA 14 years ago when she was 27 years old and I am still astounded that there is such a lack of information amongst the medical profession about PA and B12 deficiency. There is a Pernicious Anaemia Society based in the UK (note the spelling) that provides a lot of information on PA and B12 and can answer questions.

When receiving injections of B12, it is essential that your doctor monitor folate and iron levels. B12 needs a healthy supply of folate and iron in order for it to be properly utilized in your body. Yes, pernicious anaemia can cause low iron stores, in fact, it is quite common even to have all three anaemias, being PA, Folic anaemia and IDA (Iron deficiency anaemia).

Regards,
Cats
YESSSSSS, catscandance .... I am 99.9% sure that those were the two words that the doctor used yesterday "Intrinsic Factor Antibodies and Gastric Parietal Cells Aantibodies". So, are both of those tests that he is testing me for, do they both test for "Pernicious Anaemia"? Or is one of the tests used for testing for "Celiac's Disease"? Do you know catscandance? If these tests come back negative ..... what is the other tests to do to check for Pernicious Anaemia? Would that be the Schilling's Test (spelling)?? Or is there something else? Ahhhhh, and thank you on answering the question about if Low Iron Stores and Low B12 are common in people with Pernicious Anaemia. That was what I was trying to find last night and didn't really find anything on the web. Maybe I am not typing in the right thing.

Yeah ... this Hematologist is really nice .... he seemed to really know his stuff. He was explaining all kinds of stuff .... the bad thing was, he is Indian, so once he really got into explaining things .... it was harder for me to understand because I was focusing so much to understand his words and I was saying "what's that" or "huh" several times, but I didn't wanna keep doing that, LOL. But he was very nice and definitely wants to figure out what is wrong with me and help me. I just have to try and focus harder on his words when he really starts getting talking about things because he starts talking really fast once he is explaining things. Now it just stinks waiting. Like I sit here and I am like ...... maybe after a year of trying to find out what is wrong with me, are we going to finally get a real definite answer???? Then I think, if it is this Pernicious Anaemia, then we can get me on the ball with fixing me and getting me back to my normal self and I am soooooo excited for that to happen. Then I also think .... it's been so long and no real definite answers, what if it isn't Pernicious Anaemia then what?? Now I am also scared that what if this test comes back negative and I really do have it, since the blood tests for PA aren't 100% accurate? I wonder if he will do further tests to see if it is PA. It just stinks having to wait a week to find out the results. :(

If it is PA, I am wondering if me being on Percocet for so long has something to do with the lack of stomach acid or caused it in anyway?? I am on Percocet for my back (collapsed disc). I have been on medication since like 2000 or 2001. For like 2 years before that .... I was taking 4-5 Tylenols or Motrins at a time just to try to get the back pain to go away but it wasn't helping, so after further testing on my back and seeing Ortho. Surgeons and Neurosurgeons etc, now I have been on the Percocet, which helps ..... doesn't take it totally away, but it's livable. But I am hoping that hasn't done something to my stomach and caused me to lose the stomach acid. That is .... if it turns out that I have PA. :confused:

Also, thank you soooooooo much CTweet and alaska_free for responding .... I do take in everything that you all tell me and I thank you all for taking the time to post things. EVERYONE'S posts help me!! So thank you all very much!! ;)

Tifferzz





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