Scary symptoms : I have been losing... - Pernicious Anaemi...

Pernicious Anaemia Society
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Scary symptoms

jennyfromthabayfr
jennyfromthabayfr

I have been losing weight over the past 4 months, from 167 to 123. I have been anemic for years, and in rhe beginning of this 4 months, the symptoms were vague and i thought it was the flu. Doc said i had extremely low iron and vitamin B12 deficiency. as well as vitamin D. I am on all of these still plus vitamin C, vit B complex and multivitamin. I have no appetite and force myself to eat. I get anxieties, vertigo, memory loss, fast heart rate, and thw weight loss is the most terrifying. I need help, my cardiologist says it most likely is pernicious anemia due to ro my 2p years of alcoholism. I am 4 yrs sober but he believes i am missing something called intrinsic factor? I still need to see a neurologist and gastroenterist(misspell?) i also have extreme depression and my primary physicians (i get second opinion) will not take me seriously. I just need to have test runs so i know yes or no. What else could it be? Please help!!

13 Replies
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It sounds like the cardiologist might be on the right track but either he or she is not expressing himself clearly or he misunderstands what pernicious anemia is.

Alcoholism can deplete your B12 level, so that might be the reason you've become low. There are many possible reasons for a person to become low in B12. Some of the other reasons include diet, medication, and gastric bypass surgery.

Intrinsic factor is a protein that is created by the cells that line your stomach (parietal cells). Pernicious anemia is an autoimmune disease where the body makes antibodies that destroy either the intrinsic factor protein specifically or the parietal cells where intrinsic factor is made. The end result is that the body stops being able to absorb B12 from food because the protein it needs to bind to (intrinsic factor) isn't available.

As far as I know, alcoholism cannot cause an autoimmune disease. But it is possible that you've developed an autoimmune disease which is unrelated to the alcohol consumption. If you've been taking a bunch of supplements and your levels haven't improved after additional testing, then it sounds like there is an absorption problem. Have you been offered injections to increase your serum B12 levels? Have they determined why your iron is low?

Honestly, if you are low in a bunch of different vitamins, there likely is an absorption problem going on. But it might not be pernicious anemia. It could be something like celiac disease. Seeing a gastroenterologist sounds like a good idea to help figure it out.

Gambit62
Gambit62Administrator
in reply to Galixie

a healthy person will store B12 in their liver and release that in bile to regulate B12 levels. If you have any degree of liver damage jennyfromthabayfr this may mean that your liver is no longer able to store B12 as it should which is another thing that can lead to problems with B12 levels.

Have you seen a dietary specialist at all, given the lack of appetite and having to force yourself to eat. It is possible that this might be part of how the psychiatric impact of B12 deficiency is affecting you.

What treatment are you having for the B12 deficiency? Tablets or injections - you probably need loading shots rather than just relying upon pills.

Unfortunately it can take a while for symptoms to start to improve and some may get a little worse before they get better.

Also, it may be worth trying a different form of b12 eg if you are on methylcobalamin as not everyone responds well to this and it can increase anxiety in some people.

Brilliantly well done on being sober for so long - an excellent achievement which shows you are doing good stuff to help yourself. Keep it up!

Read through the posts and replies on here and find out more about B12 deficiency and PA.

The lack of vitamins and minerals being absorbed into your body is bound to be contributing to your anxiety and depression so the sooner you can get a good level of treatment - probably every other day B12 injections until you feel better (this could be months) and plenty of the supporting supplements to go with them - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron - the better.

Now you've got this far there's light, and a better life, in sight.

We'll help you along the way... Go get it!

Thank you so much for your support, im glad i found this site. Here in the U.S its not very common unless over the age of 60, and we all know our own bodies better than any doc so when i went to the ER (because they can run many tests without waiting for clearance and all that) they didnt even bother to check because they assumed i was only depressed and severe anxieties. I said well of course i am, i dont know whats wrong with me and that is not the main cause. So i went to a walk in clinic, told them my symptoms, and the doc there found that i have deficiency from almost all vitamins, especially iron and B12. Ive been anemic for years. He diagnosed me as vit B12 deficiency and low iron and referred me to a cardiologist and said i had extreme malnutrition and it may be a rare (out here it is rare for my age, 42) disorder called pernicious anemia which i never heard of. So now i am moving forward and going to see the gastroenterologist next. All i want is to get better and not have daily fears of dying, thats how i feel at this point. I can barely work and may have to take leave or quit and that makes me sad, i am a training manager for Dollar General stores in my district. Its very fast paced and i have to travel alot. Lately i have been too weak to do much and i cry alot in my office. Because of where i live, im afraid of dying before im fully treated. Losing 46 lbs in 4 months is alot. But i do eat, and my stomach has alot of pain after. I eat but it doesnt help because 20 minutes later i feel like i am starving to death again. I dont get that. Sorry for the long response, im just scared

It tends to appear rare but a lot of that is due to a lack of knowledge meaning people don't get a true diagnosis.

If you can just keep eating a little and often you will gradually improve.

Try to get all the treatment - B12 injections plus all the vitamins and minerals you need to make it work and you should get better soon.

Well done and good luck!

Hi,

I am not medically trained. May be some useful info in links below.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK, has members from around world

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

More B12 info in pinned posts on this forum.

Thank you, i got alot of info out of that! Now i have more to ask my doctor as its not a very common disorder in the U.S

It’s the deficiencies making you feel like that. Low Iron, B12 and Vit D can cause you to feel extremely ill.

You just need to get them back up and you’ll be fine, you’ll feel like a new person.

If you can’t absorb B12 it’s not a problem as you’ll have to take an injection instead.

If you can try eat healthy that will help a lot. It doesn’t mean stop all foods when you’re dieting, just reduce some of the bad food and include good food in to your diet gradually.

Just start some exercise like walking and gradually increase. It takes time. The slower you lose weight the longer it stays off. Don’t try doing too much at once. Take it slow and you’ll get there.

PA is easily treated, thousands have it in UK.

You’ll be fine if you take it easy.

Don’t stress, that won’t help, just make small changes, that will help greatly.

We all go through difficult patches in our lives.

Vit D and B12 helps depression a lot. See your Gp you might need some anti depressants for some time to help you through.

Thank you for your advice, i was taking the B12 pills but they dont seem to help. I take multivitamins, viramin D, iron, omega, b complex, folic acid, and vitamin C. But i dont notice any difference. I wasnt dieting, i just started off catching every single sickness around me since i work wirh the public. I also have asthma so that makes it worse. Then i started losing appetite and weight rapidly, its now 46 lbs gone and my husband us terrified im dying or have cancer because i dont look the same or act the same because im depressed, angry and scared. And he doesnt know how to help me or how to reassure me if he fears the worst himself. I told him to read through this forum, so be can understand it better

Fresh ginger tea with honey is a good natural cure for Asthma.

Also Black Seed Oil is very good which you can take 1 x 5ml spoon daily or add to tea as it has a strong taste.

Ask a pharmacist for ginger interactions if you’re on any other medication.

Both these things are very good.

Also I think you need injections if the B12 tablets are not working.

Congratulations on staying sober! My body no longer produces intrinsic factor. My body cannot get B12 from food. I give myself B12 shots. If you have PA you must get B12 shots for life, so I learned to do it myself. I also lost weight very fast and my thinking wasn't normal. Then I found out I have celiac disease. I stopped eating any form of flour and my weight stabilized. If you have celiac you must avoid flour for life. Now I also must avoid folic acid. Folate is different than folic acid. So now i'm using B12 shots that are methylated. I also have low thyroid. If your TSH is not under 2, that's a signal that your body needs more thyroid.

Best wishes on feeling better soon@

Thank you! Getting sober was the most difficult thing i ever went throygh, of couse it already did its damage. Your symtoms sound alit like mine, im curious how much weight did you lose? For me its 46 lbs in 4 months. I am currently still going to docs to get better soon hopefully within months. I will have them check for celiac, i have had my thyroid checked but it is normal.

Hi Jenny. I went through the same symptoms. I had gotten sick and lost 30lbs in 2 months. Felt like I was dying also and had severe anxiety, depression and loads of physical problems. Glad to hear you're going to a gastro doctor. He can help by doing an endoscopy and testing for parietal cell antibodies and intrinsic factor antibodies and homocysteine. When I was diagnosed I immediately found several weight loss clinics in my area and found several that gave B12 methylcobalamin shots and I started right away. Then, when I got my prescription I started giving myself shots of B12 Hydroxocobalamin 2x per week. I know its hard right now, but your health and mind will start to slowly change week by week and month by month, just hang in there. But the sooner you can start shots the better. And don't be afraid of getting too much, but be worried about getting too little. It sounds like youre on the right track taking the other supplements. And with many of us, when you get the anemia treated the thyroid will start working better, so hopefully you won't have to treat that also.

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