PA and B1 deficiency?: Hi. I have been... - Pernicious Anaemi...

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PA and B1 deficiency?

patez
patez

Hi.

I have been diagnosed with PA.

I self IM with B12, but it does not seem to be working as well as I had hoped?

Does anyone know the association with PA also causing B1 deficiency?

I have a lot of symptoms of B1 deficiency, with the bad memory, poor coordination, and walking difficulties?

Local docs here in Oman are fed up of "testing" me, and my Thiamine levels have never been tested.

I am a heavy drinker, but very recent liver and kidney function tests have come back as normal!

But I still suffer badly with my poor memory, loss of coordination (can't sign my name properly any more), and my legs feeling very weak!

Encephalopathy?

Any comments greatly appreciated.

Patez

10 Replies
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clivealive
clivealiveForum Support

Hi patez Pernicious Anaemia is just one of many causes of a Vitamin B12 deficiency.

A wiser person than I has commented previously:

"Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same."

The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life".

As you say you have a diagnosis of P.A. then your B12 injections will be needed for the rest of your life.

How long ago were you diagnosed and what form of B12 are you injecting and how often?

Was your Folate (Vitamin B9) level tested?

A lot will depend on how long you were B12 deficient before treatment started as to how long your symptoms will improve.

I am not a medically trained person but I've had Pernicious Anaemia for more than 46 years.

I wish you well.

patez
patez
in reply to clivealive

Hi.

I was diagnosed PA 4 years ago, from symptoms only.

I was refused B12 injections though, and only told to change my diet!

So I took matters into my own hands and started self IM, initially with Cyanocobalamin 1 ml daily, which helped a bit with the tingling fingers, but after research and advice on here, I obtained some Hydroxycobalamin, which improved things further.

Folate was not tested. Only B12 levels were tested, which was over 1200, but I had already been self IM when that was eventually tested, at my request!

When the tingling fingers neurological symptoms improved, I stopped IM. Within 1 month, the tingling fingers returned.

I have started self IM again recently, 1 ml Hydroxy daily, for 1 month, but the neurological symptoms have not significantly improved?

I have suffered for about 4 years with tinnitus, tingling fingers, fatigue and tiredness, loss of coordination, memory lapses, dizziness.

I do suffer with Bipolar 2 disorder, but recently had a severe allergic reaction to Lamictal (Steven Johnsons syndrome), which was when the tingling fingers and general malaise returned. I have stopped the Lamictal, and told not to take anything for my Bipolar apart from Clonazepam to treat the anxiety.

I have had liver and kidney function tests and abdomen ultrasound just done, and all those results came back as negative, apart from an enlarged prostate, which I will receive medication for next week.

But I am suffering with difficulty with walking and what I would describe as "partial paralysis" of the legs after a long drive?

Local doc has now "washed their hands" of me and refuse to do any more tests!

I work in Oman, and the health facility is very dubious, to say the least!

I requested thyroid function tests, which were done, but they can only test TSH levels, and free T3 and free T4 were not tested. I did get those tested privately, and the results were "in range"!

I am desperately trying to find out what is "actually" wrong, and Vit B1 deficiency does fit it with all my symptoms?

Hence my question about possible association between PA and Vit B1 deficiency.

Patez

clivealive
clivealiveForum Support
in reply to patez

As I said above P.A. is just one of the causes of a Vitamin B12 deficiency,

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.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

It sounds to me that you do need to inject B12 more frequently and continuously. Fortunately you cannot "overdose" on it as any excess is excreted via your urine.

Please remember I am not medically trained.

Hey there -- you ask a good question, it is true that the symptoms of B1 thiamine deficiency are in many ways similar to B12 deficiency. In fact, because I was regular "cocktails before dinner" person for many years -- and because I experienced a sudden onset of severe neuropsychiatric symptoms earlier this year only a few weeks after I stopped drinking -- I later felt certain I was experiencing an episode of Wernicke's Encephalopathy, or severe thiamine deficiency caused by long-term drinking. It seemed to describe what I was going through, especially the sudden onset. That's why I started B-vitamin IVs and B complex shots with extra megadoses of thiamine, and it helped me improve quite a bit. But every time I stopped, I would slide back after a few weeks, despite taking huge amounts of oral thiamine daily. That's when I started questioning what else was in the B-complex I might need, and landed on B12, and eventually had a intrinsic factor antibody test come back positive. So it seems I have PA. Of course, I am still wondering about the sudden onset of my mental symptoms, my reading tells me PA mental symptoms usually come on more gradual, unlike Wernicke's. But I did do a "power red" blood donation two days before, which increases demand for B12 to create new blood cells, so maybe that was a factor.... ?

It is so hard to unravel these things, especially when tests are not definitive, and I still don't know for sure if the odd sudden onset of a scary sense of unreality I have lived with most of this year is B12 related, but other things like pins and needles and numbness and odd neurological symptoms were there for several years, and I am feeling slowly, slowly better after over 4 months of B12 treatment (shots twice weekly). But I still take thiamine daily "just in case," because I cannot help but think with my previous alcohol use was a factor, and because PA affects the stomach and stomach acid, it also impacts ability to absorb other nutrients besides B12 I do believe.... ALL the B vitamins seem to be very important and work together. I wish you luck in feeling better, don't give up!

patez
patez
in reply to teebeevee

Hi.

Thanks for taking the time to tell me your problems, which are so closely related to mine, and your knowledge of Wernicke's Encephalopathy.

I am not able to have intrinsic factor tested here in Oman, but the local doc who had been "monitoring" me, has categorically stated that I "must have PA", because my symptoms of pins and needles, brain fog, tiredness, at al, all very quickly returned when I stopped taking my B12 injections for 6 weeks!

His conclusion was drawn from the fact that I am not a Vegan or Vegetarian, and I eat plenty of meat and poultry, so I am obviously not able to absorb any B12!

Despite having started loading doses of daily 1 ml Hydroxy, for 6 weeks, the only thing that really "stopped" was the tingling fingers and leg cramps!

I was especially interested to hear your comments about your improvement when you started the B complex "shots", because I have not seen any B complex IV available?

What I can tell you is that I have now just started taking Neurorubine forte tablets again, and noticed an almost immediate improvement in the neurological "twitching left fingers"! Neurorubine forte tablets do have 200 mg of B1, which is the recommended dosage (twice daily) to help with the neurological symptoms of Vit B deficiency. Forget the B12 in those tablets, because I can't absorb B12 orally!

Yes, I agree it is very hard to unravel!

I do not have much access to healthcare out here in Oman!

I am "forced" into asking for help and advice on here, and mostly, I have received some very good advice, and I thank everyone who either have the expertise, or knowledge, or experienced the same things, to share that with all of us here!

I, like you, have now found out that I need very regular B12 shots, for life!

Like you, I have also only recently discovered the health issues that Vit B1 deficiency can also cause!

But I will say that the daily self IM b12 is helping, and now introducing the B1, in tablet form, does seem to be having a very positive effect?

You have "picked up" my post about B1 deficiency, which does not seem to be discussed much on here, but it is significant!

I have since found out that alcohol related B1 deficiency, and the associated Wernicke's Encephalopathy, are the same.

But you have stopped drinking?

I can't stop drinking! My job and the stress and environment I live in, not possible!

But! From what I have read?

I need to replace that B1 that alcohol dependency causes!

I have been also independently, at great personal expense, been diagnosed with an anxiety disorder, and type 2 bipolar, but I cannot get any medication out here to treat that!

Would you believe that there is only 1 psychiatrist in Oman, and no medication available to treat psychiatric disorders!

I am struggling!

And yes, I have tried suicide, and I used to self harm, but the independent psychiatrist has given me medication to control that!

But I do suffer badly with the twitching left fingers, and very poor memory, and feeling tired all the time! Not fatigue, because I seem to have enough strength to maintain physical activity?

Your reply may actually be very helpful, because I am now taking B1, and it actually does seem to be having a very big and positive effect!

My twitching left fingers are not nearly as bad as they were! My coordination and balance problems seem to have improved!

Thank you for sharing your experience with me.

It helps!

Patez

teebeevee
teebeevee
in reply to patez

Hey Patez, I do feel for you, especially when you talk about the urge to end it all. While I am not depressed in the usual way, I did spend a lot of time this year comforting myself with how I might do the suicide route if I couldn't find an answer to my mental torture. I think often the cause is not all one thing, but several factors joined together and aggravating each other. For example, my sudden onset of mental problems felt like at first like a "bad acid trip," a non-stop heart-thumping panic attack of unreality, and my very first blood tests came back with super low TSH and overactive thyroid from a hot nodule (high thyroid levels also burn through B1, and maybe B12 too?). Once my thyroid levels were under control with medication, the anxiety left me, but the sense of unreality and all the other neurological symptoms did not. I did stop drinking completely for many months, because I was thinking Wernicke's, oh it was very hard to quit. Sadly, it made zero difference for me, to my great disappointment. The only thing that I can say for sure helps is B vitamins and especially B12, I started with methylcobalamin shots, but thanks to suggestions in this forum, I now have settled on cyanocobalamin shots as they doesn't seem to "jangle" me like the methyl. The improvement is so slow I don't notice day to day, only when I look back and read old journal entries do I realize I have come a long way! So I am starting to have faith that PA explains at least a big portion of what has befallen me. Maybe someday I will be back at least close to my normal self. I hope the same for you. In the meantime, if you want to look more into B1 deficiency, I learned so much from the work of Derrick Lonsdale, he wrote an interesting book about thiamine deficiency and many papers, including this one --

ncbi.nlm.nih.gov/pmc/articl...

patez
patez
in reply to teebeevee

Hi.

Sorry to hear about your suffering and the "battle" you are going through. I do know how you must feel.

I had actually suspected thyroid problems, but I did get my TSH, T3 and T4 tested, and they came back "in range".

I have been "chasing" my neurological and neuropathy problems for 2 years, and although the B12 injections (I self IM with 1 ml hydroxocobalamin) have helped, there is still "something" wrong, which is when I researched the B1!

Very interesting reading that article BTW!

I am encouraged that after just 3 days of taking the B complex Neurorubine Forte (which has 200 mg of B1), I have noticed a marked improvement in the twitching left hand fingers.

I am hoping that my unsteady gait, poor memory and extreme tiredness will also improve over time.

Fingers crossed that 2019 will be a better year, and that we will both be back to as close to normal as we can get?

Patez

Alcohol causes B1 deficiency.

Have you actually had a blood test that shows you have low levels of B1?

If so then it is essential that this deficiency is addressed. This is a very serious condition.

If your doctor refuses to test B1 then you could supplement with a Vitamin B complex yourself.

ValuPak B Complex is cheap over here. About £1 for a tub of 60 tablets. They are one a day (early with food) and contains a day's requirement of each B Vitamin including B1. Perhaps there is something similar available where you are in a small Pharmacy?

You could also Google search foods high in B1.

Hope this helps.

Hmm!

Very interesting that you say that!

I have been taking B1 supplements, because I had already thought about that!

Made no difference!

Patez

Just wanted to mention that the form of B1 (thiamine) that can cross the blood brain barrier is called Allithiamine, and it's available on Amazon from Ecological Formulas. I had fatigue and tingling and this form helped me.

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