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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!
[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 there again Isis and osteoblast. Yeap osteoblast, I was determined to figure out what is wrong with me. I mean I knew it wasn't normal to go how I was ... to how I am now. I was tired of Doctors saying it could be this, it could be that and not test me. I was tired of Doctors not figuring it out. I mean it is their job to figure out what is wrong with us. I think if it wasn't for this message board and me being determined .... who knows where I would be right now. I would probably be a little guinea pig, just sitting here with no energy, listening to what doctors tell me. Telling me ohhhh, your levels are fine. Or oh I don't go by that on a lab report, I go by this. I was also thinking I was just getting old. I am 34 but I was like thinking to myself .... maybe this is what it feels like to get old?? This message board has helped me a lot and I learned sooooooo much from a lot of people here, so thank you all. I don't post all of the time, but I do read different sections of this board just about every day. Good luck with your up-coming appointment osteoblast!! It sounds like you will be going to an awesome place!! I will definitely keep in mind the supplements after my initial appointment with the Hematologist. I just don't want to take anything yet .... because I am not sure what tests he will do. I don't want to alter any tests that he may have planned and I want to make sure nothing else is causing my low ferritin levels and low B12. And ohhhhhhh I love Dr.Oz!!!!! He is awesome!! I will definitely check out that book that you mentioned, thank you!!

Isis, yeah I am curious to see why my B12 is low. I am not a vegetarian and I never have been. I eat meats and eggs and I LOVE dairy!! So, yeah I am curious to figure out why. The only other medication I am on is Percocet. I am on that for my lower back problems. I have had back problemes for yearsssss. I need an anterior/posterior spinal fusion. I don't want that right now, so I am on percocet until I decide to do the surgery. That is how I originally found this board a few years ago. I would always post in the back problems section. I was on Birth Control Pills until the end of August 2007. I am not on B.C. anymore and am just on percocet for my back. I am glad that the B12 shots don't hurt much. I was worried .... I was reading that they sting and stuff, and I was wondering to myself .... how much do they sting?? LOL. Wow your B12 is REALLY low too!! Do they know the cause of your low B12??





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