Just want answers : For over 6 year I... - Pernicious Anaemi...

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Just want answers

Jaye75 profile image
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For over 6 year I have had weird symptoms:- nerve pain (burning skin that's lasts upto 2 days or more) in different body parts but mainly lower half of body , pins and needles in feet, chronic constipation regardless of diet, ringing in ears, blurry vision, tiny ulcers on tongue also indentation on sides of tongue, skin pigmentation on face that is spreading, reoccurring anemia (4× in 2 years) vitiam deficiencies (vit D, iron, folate) fatigue, worsening short term memory, struggle with words most days, low concentration, dizziness, balance at times, hip and rib pain, random leg cramps, nausea at times, no libido at all for over 2 years i could mention more but brain a bit fuzzy today but nothing ever shows up when I get scans or further testing for various things.

I recently had my folate and b12 checked for the first time and it showed I was low in folate but slightly higher in b12 I know there is a possibility of a false reading, my diet is good I eat lots of fruit veg, meat and dairy the only thing I dnt eat is seafood. I have been taking lanzaperol for over 5 years due to acid reflux, I was also diagnosed with fibromyalgia which I am convinced I havnt got, I suffer high blood pressure (controlled) , sleep apnea (cpap used) and recently I am very irritability, my personality has changed over 5 years I am now a totally different person than I used to be.

My Dr has gave me more ferrous furmate as usual and folic acid which I had to take for 4 months and then he is going to do a in factor test, why do I have to wait this long?

Please someone/anyone advise me does this sound similar to anyone diagnosed with pernicious anemia or could it be the folate deficiency.....confused and frustrated

I'm 46 don't drink i use a vape on the lowest nicotine 3mg I was very fit but not so fit now due to symptoms slowing me down

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Jaye75
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9 Replies
Marz profile image
Marz

You certainly do have many symptoms pointing towards B12 issues - possibly due to taking a PPI for so long. I believe 8 weeks is the suggested time . Low acid and high have similar symptoms and low acid can be linked to low thyroid.

Your symptoms also overlap with low thyroid so am wondering if you have had the correct tests. Importantly thyroid anti-bodies as Hashimotos can cause absorption issues.

I have Hashimotos and a B12 issue so would suggest you take a look at Thyroid UK - another forum here on HU.

thyroiduk.org

You will receive excellent advice here regarding B12 and hopefully you will soon find answers. Happy to help 🌻

Jaye75 profile image
Jaye75 in reply to Marz

Thank you for your reply, yeah I had thyroid tested and all is ok I do know what yr saying as a few things could overlap with my symptoms but it's having to wait until September/October to have I/factor checked that baffles me 🤔

Marz profile image
Marz in reply to Jaye75

Yes it does seem a long time to wait for an IF test.

So which OK thyroid tests did you have and do you have the results you are legally entitled to have ? The tests required are TSH - FT4 - FT3 and the antibodies TPO & Tg to rule out Hashimotos. Sadly the correct tests are rarely done.

I looked at your previous posts and saw you have Endometriosis. I have read there is a connection to auto-immune thyroid.

Jaye75 profile image
Jaye75 in reply to Marz

Yeah results wereTSH - 3.10 mlU/l

T3 - 5.3 pmol/L

T4 - 19.0 mu/L

I didn't have others tests just these

Marz profile image
Marz in reply to Jaye75

Even without the ranges ( the figures after the results ) they do look good. A TSH in a healthy person is around 2.5 Tests are best done fasting and early in the morning as the TSH has a circadian rhythm and lowers as the day progresses and after food.

When were these tests done ? Maybe ask for the Anti-TPO test next time your thyroid is checked.

When I was diagnosed in 2005 all the results were within the range but anti-bodies were high. The latter confirmed the Hashi's and treatment began.

Muttilina profile image
Muttilina in reply to Marz

Tank you Marz you helped me too, big hug

prillyb12 profile image
prillyb12

I've been reading about low stomach acid, and one of the symptoms is acid reflux. Some years ago I had a doctor try to put me on something for acid reflux, and I said.....it's too little acid, not too much. He didn't seem to understand. When I increase my betaine Hcl, all my acid reflux symptoms go away.

Gambit62 profile image
Gambit62Administrator

The BCSH standards say that folate absorption problems are likely to indicate a B12 absorption problem as well - both are absorbed in the ileum.I'm not quite clear what you are saying about your B12 levels - serum B12 is a difficult test to interpret because the normal range is enormous and people tend to sit at a specific point - maintaining levels at that point by using stores in the liver. However, if you have an absorption problem this release mechanism is broken and serum levels start to drop. So, the test is more useful as one for monitoring falling levels, which can't be done from a single test. Waiting for them to drop into the normal range may result in irreversible nerve damage.

If your B12 is just in range then you may well be deficient. The test is only accurate to 20%.

The standards can be found here

onlinelibrary.wiley.com/doi...

Jaye75 profile image
Jaye75

Thank you for the link, my results were as follows Folate 2.9ug/L

B12 serum 773ng/L

Haemoglobin 108G/L

Haematocrit 0.337 L/L

Red blood cell width 14.3 %

Mean corpus 26.4 pg

ESR 27mm/hrs

Looking back on my bloods over 5 years my Haemoglobin has only ever reached 121G/L after treatment, Haematocrit and mean corpus have always been lower than normal and red blood cell width has always been above 14% reaching 15.2% at the highest.

I don't know if anyone can decipher these results but I thought I'd add them regarding not being clear upon reaults

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