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Pernicious Anaemia Society
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I'm new here so I hope I'm doing this right. I

Imissmydad
Imissmydad

I am having neurological systems, severe pain with muscles, and basically all the symptoms I had when they diagnosed me. I was diagnosed at 17 took the injections for daily for 3 years then weekly for 2 years and then I stopped taking anything. I felt okay but when I look back I have had some symptoms and some of my b levels are checked if I'm sick and they have been low and I just got injections for awhile and things were good. I have had muscle issues and back pain but it would go away. I have been dealing with intense confusion and symptoms I named above. I have seen specialists but not the right ones cause there is nothing wrong with my heart but I felt I was having heart attacks. I have symptoms of tingling in my fingers pain muscle down my left arm and pain in my should muscle and transferrable pain. It was not my heart itself . I have kidney issues I have had tons of kidney infections and my I've always showed mild kidney disfunction but I have a Doctor that doesn't concern herself with flagged blood work and I have flags. But I trusted her. I have developed depression and it has gotten so worst in the last 2 years. The biggest thing is Confusion and vision. My brain feels like its short circuiting that how I try to explain it. So I have seen so many specialists and things coming back negative. So I thought someone could tell me if there are other tests besides a B12 test that can be done to show normal B12 results? I've haven't had many B12 tests done and I'm now 43 yrs of age. HELP its getting worst everyday and I've been to hospitals and in Canada you have to be referred to specialists.

Thank you so much

Sorry if I repeated or grammar not good but I struggle even typing this because of confusion.

18 Replies
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clivealive
clivealiveForum Support

Hi Imissmydad were you actually diagnosed with Pernicious Anaemia at the age of 17?

If so you should have carried on with "maintenance injections" of B12 at regular intervals (every three to four weeks if using cyanocobamalin) for the rest of your life.

Do I understand you correctly that you haven't supplemented with Vitamin B12 for twenty odd years? The fact that you were "OK" after five years of injections and that you have "gone down hill" since then suggests that you are not sourcing enough B12 via your diet.

Are you able to eat meat, fish, seafood, eggs, poultry and dairy produce?

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Can you "see yourself" among any of the above people?

Are you easily able to source B12 injections "over the counter" in Canada?

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

Yes I was diagnosed at 17 and is cyanocobamalin a b12 pill? I had some injections when I’m sick cause my levels do go down on blood work. I’ve never been managed and I have had no estrogen in my body since I was 35 cause I had ovaries taken out due to a disease endometriosis, I suffer with teeth all the time and I had to get a major jaw surgery because I had this genetic issue that my jaw was decanting and the jaw had barely any hinge left so TMJ was severe. I’ve had lots of illnesses but nothing like what I’m going through now. And I remembered wait can there be other tests besides b12 injections cause they are seeing normal range. I just need to know any other tests that can show false levels. I haven’t had many b12 tests. No one managed my condition and I developed severe depression and my confusion right now and my loss of visions with extreme muscle pain and swelling and trying to tell them my brain feels like it’s short circulating and I can’t stop sleeping they say your b12 is in range. My stomach digestive has always been a problem on and off. The list can go on.

My grandmother had it and my dad just died of ALS and healthiest man on earth never had b12 checked. I have not managed this I never knew you had to. My kidneys I’ve been having issues with for years but everything and where I am today I would like to jump off a bridge and not feel this pain and my brain short circuiting and doctors thinking I’m just crazy as that is not the case at all except my brain is not right and I can’t explain it. No one is taking me serious but I still have a team of internal medicine taking me on for rapid assessment Jan 16th. So is it possible the b12 levels when I’ve had them done possibly be a false reading and what other tests can confirm I may be absorbing it but is it going to where it needs to go. I have no intrinsic factor does that heal and you can take pills

Sorry I had 5 miscarriages

clivealive
clivealiveForum Support
in reply to Imissmydad

If as you say you were diagnosed with Pernicious Anaemia at the age of 17 then B12 Injections should be administered regularly from then for the rest of your life.

Cyanocobamalin B12 can be in an injectable form or tablet and is just one of the types used in the U.S. I don't know what is used in Canada as I'm in the U.K.

A serum B12 test only measures what is "swirling around" in the bloodstream - not what is actually in the cells.

You could ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

I'm sorry to read about your health problems but as I say I'm not a medically trained person so am unable to comment other than to sympathise and hope that you get the treatment you need and deserve from your doctors.

Thank you I just want to know what I can do on my own to outrule a condition I’ve been diagnosed with and never managed like it should have been by my dr. I was too young and with my memory loss I don’t believe my neurologist explained any management. Because he was retiring maybe he sent something to my dr who was same doctor when I was 17 a note to make sure it’s managed. And I never talked about it. I have gotten from my mom and friends is there a day where you don’t feel sick always nauseated or too tired to do anything and depression that is under control with meds but dealing with loss of my father and being in so much pain with constant new symptoms I would be shocked that I’ve haven’t had this monitored and I am where I am. Never once asked about any other tests and right now they haven’t checked. But once again would it not be a neurologist I would see for this? You have been so helpful because you responded and I think validating with no judgement is a breath of fresh air from emergency doctors with my extensive history just treat me for pain and say your B12 is normal. Maybe it’s not and I am doing this to just ask I understand your not a Doctor. But I would like someone to do those tests to just rule something else out . Thanks I’m so grateful

clivealive
clivealiveForum Support
in reply to Imissmydad

A Neurologist or Haematologist would be the best persons to see if you can.

Alternatively perhaps you may be able to join the Pernicious Anaemia Society click on the link below and scroll down

.

healthunlocked.com/api/redi...

I'm not sure if the link will work in Canada or whether you will be able to pay £20 in Sterling for a year's membership. There is a lot of information on there and they have been known to intervene with doctors on behalf of members.

Take care now.

I’ve had symptoms throughout the time I haven’t had injections and I can’t absorb the drug I have no intrinsic factor.

clivealive
clivealiveForum Support
in reply to Imissmydad

You don't need to have any more tests - you have P.A. - you need to have "loading doses" of Vitamin B12 injections re-started immediately and then continually for the rest of your life.

Sadly I don't know what the protocol for treatment of P.A. is in Canada or how you can persuade you doctor to give you the correct treatment.

What can cause false b12 levels in blood that what I need cause you don’t want to hear all of what I’ve been through since after injections. So you say MMA Test , I cant take B12 by mouth. So it would have to be injections all I’m saying since I’ve been really bad my dr won’t give me injections cause my b12 shows up as normal but that’s just saying it absorbs it and I need to know if it’s going anywhere. When I was 17 they diagnosed me with ms that’s how severe my symptoms were and the neurologist did a simple b12 test and my level was 10. I couldn’t even walk or standup without falling down I had harsh symptoms and he said it’s because it takes awhile to present these symptoms so I had the deficiency like 5 years before. I am going to meet with an internal medicine team but it takes time I’m from Canada medical system very slow. I keep going to hospital and they rule things out so I just want to be prepared as I’m having the exact same symptoms but even worst now. I hallucinate , my head is so fuzzy it’s so confusing I just lie in bed

If your ignorant doctors don't know how to treat PA, perhaps you could manage it yourself.

I also had endometriosis, there seems to be some link with PA.

My experience is fairly similar to yours, with doctors refusing to treat me. So I started self injecting and feel much better for it. Many people in the UK have to self inject. I still have some symptoms, they can take a long time to heal, but no depression.

Good luck with sorting out your problems.

Gambit62
Gambit62Administrator

Imissmydad, in Canada B12 isn't prescription only which means that you should beable to get it from the pharmacist without prescription.

I have intrinsic factor or whatever you say which means I can absorb through oral meds

clivealive
clivealiveForum Support
in reply to Imissmydad

I think you mean that you have "Intrinsic Factor Antibodies" which would confirm that you do have Pernicious Anaemia and do need B12 injections for life.

I mean I can’t

Gambit62
Gambit62Administrator
in reply to Imissmydad

Imissmydad, to be quite clear - injectable B12 is available as an over the counter medication in Canada, so you don't need a prescription.

I'm so sorry you're going through such a bad time Imissmydad

The website: b12deficiency.info/what-to-...

has links to Pat Kornic's Facebook page and other neuro/psychiatric links. I believe she is Canadian and may be able to advise you on the Canadian system although, as already suggested, it may be less stressful to start self injecting with over the counter B12 phials (much easier than it may at first seem) as it's so apparent from your medical and family history, previous diagnosis, etc. that this is what you need. There are suggestions on this website for writing to your clinicians, as this can sometimes be more effective and will be on record. It may be also advisable to take someone with you to your appointment for extra support and witness.

You probably already know that the serum B12 test is flawed for many reasons (Martyn Hooper's latest book, 'What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency') has more detail on this.

The latest BMJ research document (summary only) below demonstrates the uselessness of testing after any previous treatment as do other guidelines so, hopefully, GP will probably be able to access and read the full document (behind a paywall). At the bottom of page 4 ' under, 'How is Response to treatment assessed'), it outlines that, once treatment is given, blood levels will inevitably increase but it is the clinical condition of the patient that is important:

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required".

The document also states that, as there is no reliable test, history and symptoms are paramount and neurological symptoms should be treated with injections 'every other day until no improvement' to avoid permanent damage :

bmj.com/content/349/bmj.g5226

pernicious-anaemia-society....

b12deficiency.info/.

As it's generally so misunderstood by GPs and specialists who are not up to date with latest research, it's important to know that vitamin B12 is a primordial molecule we can't do without. It has to be treated urgently and adequately when any neurological symptoms appear before they worsen and become permanent.

............

The Dutch links on the r/h side of this forum also explain about testing, B12 misconceptions and the importance of early and adequate treatment.

stichtingb12tekort.nl/weten...

..........

Two experts in the field, Sally Pacholok, "Could it Be B12?" and Dr Joseph Chandy, have been studying and treating PA/B12 deficiency for years and both describe how under diagnosis is causing severe and permanent neurological/psychological damage if not treated early and adequately.

..........

Very best wishes for early treatment and a good result.

...........

PS More helpful links:

europepmc.org/abstract/med/...

medium.com/@martinecotton/1...

Extract taken from Martyn Hooper's "Living with Pernicious Anaemia":

"Pernicious Anaemia runs in families. Doctors have known this for decades and recent research has found that the brother or sister of a patient with PA is 40 times more likely to develop the disease. It stands to reason therefore that patients who have PA will run the risk of passing on the condition to their children".

Thank you so much I will check these sites out especially Canadian one.

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