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Hello all. I have been dealing with several symptoms for about a year now. I have posted here a few times and also on the Thyroid Board.

For the past year, some of my symptoms have been, ALWAYS tired and fatigued with NO energy to do anything. I am tired when I am sitting, which is pretty much all I do now a days because I have no energy to get up and do anything. I have lost weight ... lost about 30 pounds since the beginning of the year, am down to 125 pounds now and I have NEVER tried to lose weight. I keep trying to eat things now to gain weight, but I am not gaining any. I have sporadic bouts of high blood pressure which the doctors have done several tests for, but they came back normal. My arms and legs fall asleep VERY easily. If they are in a certain position for a few minutes, they will fall asleep. My hair is BIG TIME THINNING!!!!!! I am always cold or sweaty hot. I get brain fogginess, I feel like I forget things and cannot remember things like I used to. Like I will know I have to get something when I go into a room, I will go to the room, and forget what I am there to get, it is driving me crazy!!! I never used to be like that. There are times I get so tired from just walking up the stairs, sometimes my heart will beat really fast after I walk up the stairs too. It doesn't happen all of the time ... and I never know when it will happen, it just happens. Like I get to the top of the stairs and I am out of breath and my heart is eating really fast. My eyes have been doing this weird twitching back and forth thing ..... they both do it at the same time and they move back and forth really, eally fast. It will do it for like maybe 2 seconds, then it will stop. I am like ... what the heck is wrong with me!!

Have been back and forth to the family doctor, tested my thyroid, all came back normal. Did a full blood panel, all came back normal. Did cortisol tests, they came back high ... doctor says that because I have back problems, and am always in pain from my back, that could be why my cortisol levels are high. Have some hormone testing done .... FSH came back a little high, LH came back normal, Testosterone came back on the low side of normal, was 28. I had my Ferritin level checked the other month ... someone mentioned to me to have that done on the board here. I believe my level came back at like 20, 21 or 22. I don't have those results in front of me at the moment, but it was one of those numbers. People mentioned to me that my Ferritin level could be why my hair is thinning. I went back to the docs, told her what people were telling me. She said she doesn't go by Ferritin levels. She goes by what the Blood Panel results are when it comes to Anemia.

She then sent me to an Endocrinoligist. I went there last Friday. This doctor was not of any help either. She doesn't know why I am having all of these symptoms. She said I have several groups of symptoms, but when she thinks my symptoms could be one thing .... the other group of symptoms rule out what she was thinking. So she told me she was at "Aw" and doesn't know why I am having the symptoms I am having. I was like ok .... I left there and was MAD!! I was thinking, you are the specialist .... you know my symptoms, yet you can't help me?? Ohhh the one thing she did say was ... I could be lacking in B12, that could be why my hair is thinning. She even looked at my hair and used her hands through it to look at spots, and she was even saying .... "yes, you do have a lot of thinning spots through out your head". I was thinking ... UM YEAH! It's been big time falling out for months now. Soon, I am not going to have any hair and I am only 34 years old!

Anyway .... I go home and of course was mad. I figured I would try to order the B12 test myself. So, found an online lab, ordered the B12 test, went yesterday, had the blood drawn, and got my test results back today. Well, my B12 is low. I am just not sure if it is low enough to cause any of my symptoms. My level cam back at: 172. The normal lab ranges for B12 on the lab report is: (211-911).

I faxed them over to my family doctor and to the endocrinologist. I am not sure if they will do anything or not. Does anyone here have any information on B12 or any experience in B12? Is my level just a little below normal? Could my level be causing my symptoms? If you have any information or advice for me PLEASE let me know. I would GREATLY appreicate any advice. Thank you!!

Tifferz
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!
Tifferz,

I agree with IamUnique. Thank goodness you knew to have your B12 tested. Many doctors don't have a clue about B12 deficiency. Like IamUnique, my symptoms were horrible, and the only thing that has ever been found wrong with me is low B12 and low B6 (haven’t had vitamin D tested yet). My lab’s references for B12 are 200-1100pg/mL, and my B12 was 329 when it was first tested. Low, but “normal,” certainly higher than yours. Based on my symptoms, though, my doctor realized I desperately needed B12, so I’ve been having injections for three months and things are slowly improving. I hope you are able to get relief very soon.
[QUOTE=ChristineVA;3254343]I have done some reading on-line that now says that they are finding sublingual B-12 to be just as good as receiving the injections.

I found some sublingual B-12 at Whole Foods. It is $20 per vial and each vial contains 75 dropperfuls. One dropper contains 1000 mcgs which is a good dose. I bought some. I'm not low on B-12 but my levels could stand to come up some so I thought I'd give it a try.

If you don't want to do the shots, you could try this. You just put in under the tongue.[/QUOTE]

There is a lot of different views on this. I agree with the tried and true method that if you have a very low level like the posters here mention, especially with the severe symptoms, you must have the injections to do well, and get better quickly. THEN, once levels are up, and you are feeling much better, it's worth it to try the sublinguals, then have bloodwork down the road and see how the levels stay.

After my injections and I got my level up, I switched to a prescription B-12 to keep mine up. Down the road, 5 years later, my level is once again lower than it was the first time.

It's a decision you have to make for yourself. Once the loading shots are over, usually you only have to take one every month or 2 anyway. Maybe 3. Not a bad thing.
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 :)
It really IS best to be on top of things like this, especially when some Drs. don't seem to be. Or when they kinda overlook things. Another thing; it is of more significance when a low B-12 shows up in a younger person like this, and the cause needs to be found. Unless you've been a strict Vegan or Vegetarian for quite a few years, had intestinal surgery, taking some sort of medicine that would cause it, maybe a few other reasons, it is not really normal for a younger person's B-12 to get very low.

Pernicious Anemia isn't that common in younger people, but it does happen.

It's best to find out why you have it; not just blindly treat it and go about your business.

Oh, and I reread my first post; my B-12 level was NOT 464 a year ago, it was 517. And has now, 6 months later fallen to 162. Thats a big drop for that short of a time. I think I need to mention that to my Dr., as I haven't had a chance yet.

No, I don't think the shots sting, it's just a quick jab like any other injection. :)
Hi meeganone43, I will list all of my symptoms that I have been having for about a year now, I hope this helps you. What kind of symptoms are you having? How low are your lab numbers?

My symptoms have been:

1. Always VERY tired and fatigued with NO Energy!!

2. Brown patches on my face and around my lips.

3. My arms and legs fall asleep VERY easily. Then occasionally my hands and feet will kind of tingle. It almost feels like they are about to fall asleep, but they don't. It's just like the initial tingle of them about to fall asleep, but then don't fully go asleep.

4. I get lightheaded, where I feel like I am going to faint.

5. I have lost 30 pounds since November/December 2006.

6. I bruise easily, I always have a black and blue mark on me somewhere.

7. I get irritated VERY easily now a days.

8. Vaginal Dryness

9. Loss of sex drive

10. Sometimes I get to where my brain cannot think and I forget simple things, my brain used to work VERY well, maybe too well LOL, but not anymore it doesn't!!

11. I am always either hot or cold ... always!! Especially cold hands and feet. During the whole summer, I pretty much had my robe on in the house. If I turned up the thermostat, then I would get really hot, and have to turn it back down. I wake up in the middle of the night sweaty (not every night but it does happen a few times a week).

12. Sometimes I get out of breath and my heart beats really fast just from walking up my steps in my house. It doesn't happen every single time. I never know when it is going to happen, it just happens.

13. I have sporadic bouts of high blood pressure.

14. My hair is thinning BIG TIME and falling out!

15. For the past 2 months or so, my eyes have been doing this weird moving thing. Like both eyes will move side to side really fast for like maybe 2 seconds maybe 3 seconds, but they move back and forth really, really fast and at the same time and I can't stop it. Like it will happen for those couple of seconds, then it will go away.

That is all of the symptoms that I have been having over the past year.
Isis

Thank you. I requested the lab today but the doc hasn't signed off on it yet...which means he hasn't even SEEN it yet. I would have thought my nurse would have waived a B12 number like that under his nose the second it came in. (sigh) The receptionist (bless her) put my labs and chart on the top of his pile next to his lunch. Hopefully I will hear from him soon. To feel so bad and know there is a chance that a few shots might make me feel so much better makes for a very impatient person :mad:


Now that I have looked over the b12 deficiency symptom list it all makes sense. Except for the chronic pain post choly. I truly thing its a sphincter of Oddi dysfunction. If I can these two things fixed perhaps I may feel normal again.

Does anyone remember "normal"?

Is there a support board for just b12 deficiency or pernicious (sp?) anemia?

Edited to ad: He looked and signed off and they faxed. I heard her wrong on the phone I guess. My B12 is 150 not 112. Still pretty darn low huh?
Low B12 can really mess up a person, even if you're borderline you can still experience symptoms. Fatigue is one of the very common symptoms! Other symptoms can even affect your neurologically by damaging nerves.

You need to find out what is causing your B12 deficiency. It can be a number of things, some are: being on oral contraceptives, heavy period, insufficient B12 in diet (ie. not consuming enough meat, vegetarian, vegan) If this is the case, you might need to take some B12 supplements, and/or get B12 injections, until your levels are back up to normal. After that, you need to solve the problem that is causing low B12 levels, or regularly monitor your levels.

Pernicious anemia is a condition that happens when the intestines are unable to absorb B12 due to lack of the intrinsic factor. The test to see if you have pernicious anemia is called the Schillings test. (It's an easy procedure) If you do have pernicious anemia, it's not curable, but controlled by regular B12 injections.

When I was borderline low, I got some B12 injections. I also did the Schillings test, and lucky for me I didn't have pernicious anemia. My doctor thought it was probably due to my diet (I don't eat a lot of meat) and because I was on the pill, and this can affect B12 absorption. Now my levels have been normal, and constant for a couple years.

Get your B12 levels back up ASAP, and good luck! :D
Yes, 150 is still very low. And true, you really need to know the cause. Did he not mention any testing for PA?

I also think it would be good to have more than one shot a week for a while, but if that's all he'll give you, well.......

Why not also get some sublingual B-12 from the health food store and use it at the same time? It couldn't hurt. The Methyl Cobalamin along with folic acid works best, and should help boost your levels while you are on the shots.

There isn't a specific PA forum on here but are several out there online I've seen.
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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