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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
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!! :)
Hi Tifferz,

I also found out that I have a B-12 deficiency. My B-12 number was 155. I had alot of the same symptoms that you had (mentioned in this post). I started the B-12 shots about 2 weeks ago. The first week, I had to do them every day. Then I went to once a week for the next month and then monthly. Last week, I went to once a week and did not last long. I made it about 4 days before my feet started burning and the nausea came back. I ended up doing an extra B-12 shot that week. I am making through the 2nd week with one shot. No problems yet.

I do that shots at home. The nurse at my dr's office showed me how to do them in my stomach. The first couple were hard to do but now it's not so bad now. The only side effect that I had was some stomach upset around the 2nd or 3 day of doing the shots. The relief kicked in around the 3rd day. It was amazing to see the difference. I was alot more awake, the burning in my feet stopped and I was actually starting to gain some weight. When it wears off, I start to notice vision changes, nausea, feet hurt more and I start dropping weight.

If your B-12 is low, I would not wait till Oct 29 to start the shots. I would call your family dr now and have them show you how to do it. The sooner you do it, the better chance that you can reverse any damage. When I had to go in to my family dr to get more blood test, my family dr heard that my number was low and he immediately started me on B-12. Don't wait. Time is not on your side with this. The longer you wait, the more damage you will have.

Good luck
alaska
[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 :)
CTweet,

Sorry it took me forever to get back to you. I don't live in Alaska yet. I am wrapping up my Master's degree and will be heading up there to teach in Sep 2008.

I also deal with chronic pain and adhd. I take stimulant medications to help manage the adhd, so I never could tell if I was tired. It looks like we have about the same level of B-12. I was at 150 before I started the b-12 injections.

It is amazing to feel the difference now that I am on the B-12 injections. The burning and pinpricks in my feet are gone. i am able to wear socks and clogs just in time for winter (I thought for sure that I would be spending another winter in sandals). I also feel like I have more energy.

I have been experiencing some ups and downs. I did great when I was doing daily injections. Then I went to weekly and struggled. I had problems with my feet, nausea, weightloss, no appetite, and vision problems. I ended up doing the injections every 6 days. When I went to 1 a week, I dropped about 8 lbs within 2 week period.

Luckly, I went back for follow up appt on Monday with the neurologist that found my B-12 deficiency. He was impressed with my pain in my feet down but not with my weightloss and brusing. He said that with my level being this low and having symptoms in between the injections, he increased my B-12 to 2 injections a week for the next 6-8 weeks. Then 1 a week for the rest of my life.

At this point, they have no clue why I am not absorbing it. They did numerous blood test to check for celiac and PA and they came back normal. The neurologist wants my family dr to do a Shillings test, but i am not sure about it. The funny thing is that I notice when the b-12 runs low. heck, my stomach knows and I can't afford to lose anymore weight.

alaska_fee
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
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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