Help with diagnosis?: Hi My recent... - Pernicious Anaemi...

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Help with diagnosis?

mistygrey profile image
11 Replies

Hi

My recent iron levels below show a low iron result and b12 has gone up from 246-501 which is good but I am still sceptical that I have PA. I had an intrinsic factors antibodies test done before starting my b12 tablets and it came back negative... is it possible to still have PA if your b12 has gone up slightly? My iron is very low but doctor has said my FBC is normal but I feel extremely legathic and have persistent unexplained diarrhoea, which I can’t be sure is the iron pills I am on or something else causing it as I had this before I started the iron.

Any advice would be much appreciated :) also what is the treatment for PA if diagnosed? I also have Hashimotos another auto immune disease being treated for that though.

Folate 12.6 range unsure but doctor wrote normal

B12 501 ranges 180-2000ng/l

Ferritin 47 ranges 15-200 ug/l

Iron 7 ranges 10-28umol

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mistygrey
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11 Replies
clivealive profile image
clivealiveForum Support

Hi mistygrey

People with autoimmune disorders especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease are at an elevated risk of developing a Vitamin B12 deficiency.

Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA but perhaps in your case it is right and you don't have P.A.

Treatment with B12 is not an overnight cure and it is not uncommon for some symptoms to appear to get worse before they get better. A lot will depend on how long you have been deficient. There is no set timescale as we are all different.

Personally I would have thought that iron supplements would cause constipation rather than diarrhoea - I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

mistygrey profile image
mistygrey in reply to clivealive

Hi Clive

Thanks for your message. What test do I need to get to get a diagnosis if there is a test? I have been on 1000mg methyl jarrow b12 lozenges since March, so I think that's why my levels have upped slightly from 246-501.

I read somewhere on the PA website that persistent unexplained diarrea is a symptom of PA and I do have a list of other symptoms that are PA symptoms.

However does having a low iron count as I mentioned above usually correlate with a PA person?

It's the fact it has dropped which is worrying despite being on 3 iron tablets a day, should surely be going up. That's why I thought maybe I have PA also as something seems wrong with my stomach and absorption.

clivealive profile image
clivealiveForum Support in reply to mistygrey

You need someone wiser than me to answer you. However in the early years of my Pernicious Anaemia I too had persistently falling iron levels and eventually got told by a haematologist that I needed to be on iron tablets permanently so I have been since the mid 1970s.

Back then the test for P.A. was the "Schilling's test" which involved drinking a glass of radioactive B12 at the same time as having a massive injection and the next 24 (or 48 it's hard to remember which now) hours urine was measured. I had one test in 1968 which was "inconclusive" and a second (unheard of according to the technician administrating it) in 1972 which confirmed P.A.

You could always 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.

The uMMA test measures the amount of MMA in the urine or blood. Elevated levels of MMA indicate B12 deficiency. MMA is 40 times more concentrated in the urine than the blood, and the urinary MMA (uMMA) is the preferred test over the serum MMA.

The new BCSH guidelines say: “Plasma tHcy and/or plasma MMA, depending on availability, may be considered as supplementary tests to determine biochemical cobamalin deficiency in the presence of clinical suspicion of deficiency but an indeterminate serum cobamalin level”.

Please remember I'm not medically trained.

wedgewood profile image
wedgewood

Yes iron supplements are liable to cause constipation not diarrhoea . PA patients often get either diarrhoea or constipation because they have Achlorhydria /Hypochlorhydria ( no or low stomach acid ) caused by the autoimmune antibodies which attack the parietal cells in their stomach, .which affects the production of Intrinsic Factor and stomach acid . Both of which are needed to absorb Vitamin B12 from food . The stomach acid helps to keep the stomach flora happy .Lack of the stomach acid upsets the flora causing diarrhoea or constipation . Sometimes a probiotic will help . Always worth a try as it is harmless like B12 is .

KimberinUS profile image
KimberinUS

i had either loose bowel or diarreah for 4 years prior to getting my first b12 injection which help many symptoms but not that.

i read that alkaline phosphatase, which is on a cbc or cmp (i forget which) is optimal at 70 and a lower level indicates a zinc deficiency. a zinc deficiency is correlated with loose bowel.

additionally, copper is needed for iron to be properly utilized. and deficiency can cause diarreah.

hypothyroidmom.com/24-nutri...

i was found to be positive for h pylori after starting my b12 injections, so i believe it caused low stomach acid/ malabsorbtion.

it took appox 5 months after h pylori eradication before my appetite improved which i think is when my stomach finally improved/healed.

mistygrey profile image
mistygrey in reply to KimberinUS

Hi

Thanks for your message. How did you get diagnosed for PA and Hpylori?

I think I need to ask for more tests. I don't take zinc supplements so maybe I need to add some into my regime :)

KimberinUS profile image
KimberinUS in reply to mistygrey

i have not been diagnosed with PA. my one IFA test was negative but that test is unreliable. i was diagnosed b12 def from a b12 level of 169. after starting injections and being able to think more clearly, i read h pylori was a root cause of b12 def so i asked my doctor to test for it just to rule it out. i had to get into an arguement with her to get tested but i wanted it done for peace of mind. instead it was positive, twice!! meaning even after first round of antibiotics.

Polaris profile image
Polaris

Hello Mistygrey

I notice on previous posts you mentioned supplementing with B complex and just wondering if your tests would have been skewed, in which case your B12 is low (on supplements it is often as high as 2000). Hashimoto's often coexists with PA and various symptoms (e.g. iron def. diarrhoea, yellowish skin, heavy legs) also mentioned could also be connected and would suggest an absorption problem.

bmj.com/content/349/bmj.g5226

The latest BMJ research document summary (GP would probably access full document behind a paywall) above states that there is no reliable test and, (bottom of page 4 ' under, 'How is Response to treatment assessed'), once treatment is given blood levels will inevitably increase but it is the clinical condition of the patient that is paramount:

"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."

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

This is another helpful link with information:

b12deficiency.info/what-to-...

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

If the cause of B12 def. is dietary and not an autoimmune condition, oral supplementation and a nutritious diet will usually suffice but, if you have an autoimmune condition ( e.g. HAshimoto's ), H/Pylori, problems with digestion (coeliac, Crohns, gastritis, gastric surgery etc.), the condition is more complex as B12 from food is less likely to be absorbed, depletes over time and oral supplements are not usually absorbed either. There is further risk for those over the age of 60, as hydrochloric acid (which begins the process of extracting B12 from food) is more likely to reduce significantly, leading to severe deficiency, especially as this age group is even more likely to be on various medications which deplete vitamin B12 further.

Researchers now believe leaky gut/intestinal disease/gastric atrophy is the source of autoimmune disease, and this is likely to eventually lead to low hydrochloric acid needed to begin the process of absorbing B12 as well as other essential vitamins and minerals. I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/PA/B12 problems.

Dr Marc Ryan's excellent article on his Hashimoto's Facebook page was a lightbulb moment for me in the search for answers to the cause of, not just Hashi's autoimmune disease but B12 def. in particular - here is a précis of the article:

"Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy"

"Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability.

Many researchers believe that this is ground zero for autoimmune disease.

It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.

The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.

This is the place where absorption happens. Many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.)

One of the reasons for this is the breakdown of these brush borders.

Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed.

The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients."

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

Personally, I take a good probiotic, daily spoonfuls of sauerkraut and avoid gluten in the hope that this will help heal these microvilli lining the digestive system, enabling better absorption and thereby strengthening the immune system.

This did work for quite a while but, being over 60 years old (when hydrochloric acid had obviously begun to reduce) as well as having had Hashimoto's, H. Pylori and gastric problems for years, I found myself having to begin self injecting every other day after two viruses led to the onset of neurological problems (crippling fatigue, dizziness, memory problems, pins and needles etc.)

mistygrey profile image
mistygrey in reply to Polaris

Hi there

Thanks for your reply :)

I have wrote a few posts and been trying to piece the puzzle together haha it's been a tricky time!

I only started supplementing the B12 1000mg Methyl lozenges by Jarrow after I had B12 and Intrinsic Factor tested. The Intrinsic factor came back negative but I am still not convinced as I seem to have a few of the symptoms with a b12 deficiency especially feeling dizzy, faint, weak and dead legs along with various other symptoms.

I wonder what I can do next? Wether I go back to doctor and ask where I go from here? They keep telling me my B12 and iron is fine but my iron has recently dropped to 7 it was 14, and I found this surprising as I am on 3 iron tablets per day so it should not be going down. How else can I try and get a PA diagnosis either way if it is this or not?

Polaris profile image
Polaris

There seems to be a gremlin in my iPad as could not edit the BMJ link, which doesn't appear to have worked above.

bmj.com/content/349/bmj.g5226

As others have already mentioned, the IF test is unreliable and Martyn Hooper, PAS Chairman, tested negative several times. Many GPs know very little about PA/B12def., which makes getting a diagnosis even more difficult and why many of us on the forum self inject to prevent permanent damage - lots of advice here, if you decide to do this.

Joining the PAS would give access to advice for professionals, which might help convince your GP and the B12def. link above has ideas for writing to surgery, which is less likely to be ignored.

The Dutch links on the R/H side of the forum show how important it is to get early and adequate treatment, especially if you have neurological symptoms with anaemia (usually a late sign).

Good luck with this Mistygrey.

Polaris profile image
Polaris

This might help - it was originally posted on the TUK forum by their advisor, Dr John Midgley (Diogenes):

frontiersin.org/articles/10...

"The natural history of HT is the progressive reduction of thyroid function till overt hypothyroidism (24) with a rate of progression of 2–4% per year (23), while that of gastric atrophy features the progressive reduction, till disappearance, of parietal cells, leading to reduced or absent acid production (3, 22). These alterations interfere with absorption of essential nutrients leading, at first, to iron-deficient anemia, followed by PA if the self-injurious process involves the IFA (13). "

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