Hello All. Thank you for adding me to this wonderful site.
I am a newbie and not sure if I have PA, I would like help understanding my latest blood test please if that is possible. My doctor told me everything was ok, after I requested a copy of them I realised there are a few things wrong and need to know whether I should be concerned.
History:
My history of low B12 and Folate date back to 2007 when I suffered gastrointestinal problems, I was given 5 x injections and folic acid. My bloods were not retested! Roll on 10 years, 3 major operations from 2011-2014, vagus nerve severance 2013 and pancreatic insufficiencies and calcifications 2015, I was then given another blood test after intrabdominal sepsis in 2015, .
This test showed B12 was 212 ng/L, Folate was 3.1 ng/L, VitD was 26 mmol/L. I got given 3 x B12 injections and was told to buy tabs Amazon the ones that go under the tongue for the future. I had 6 x weeks course of VitD tabs 1 a week 20,000 ui and given folic acid 5 mg and Creon digestive enzymes to be taken every time I eat.
Once this treatment finished my bloods were not done again until Jan 2017. These are the results I am concerned about.
B12 is the highest ever at 483 ng/L (197-771 ng/L)
Folate low at 2.5 ug/L ( 309-20.0 ug/L)
VitD low at 11 nmol/L (50-150 nmol/L)
Ferritin high at 200 ug/L (13-150 ug/L)
C-Reactive Protein high at 12.4 mg/L (0.0-5.0 mg/L)
Red Cell Count low at 3.73 x10^12/L (3.95-5.15)
MCV high at 102.9 fL (80-99 fL)
MCH in higher range at 33.2 pg. (26.0-33.5 pg)
RDW is 14.3% (11.5-15.0 %)
I realise in comparison to others that my results may be minor but I need to make sure I understand what is happening as my doctors are leaving me to buy my own vitamin d tablets from the chemist and not taking anything serious despite my initial visit being for new symptoms. I have only been given folic acid 5 mg after I confronted my doctor about the actual results where she stated, my B12 will not stay high and will be back low very soon and that she will test me in a few months to see what is happening.
Illness:
Over the last 3 months, I stumble into walls, fall, dizziness, high pulse at 110-130 bpm upon resting.
I suffer with hypos and hypers from food without diabetes (think this is more a gastro issue).
I have numbness in my right hand, especially on little finger tip. It also feel at times like I have a knot in the wrist like carpal tunnel syndrome.
In my right leg, my knee keeps locking and I have been told from the knee to thigh it's calcified? I also get pins and needles in lower legs and feet. I have what feels like the start of cramp in my upper leg.
I have problems sleeping lately, despite sleeping pills. I go 2 or 3 days unable to sleep and when I do, it's like a coma. I sleep so deeply without any dreams for 12-14 hours and only wake when I turn as the pain in my hips and lower back kills me.
I have also been told recently I have stenosis in back and 3 ruptured discs and nerve impingement.
My nails are ridged, teeth chipping and I feel so weak I can barely move.
Lately I have been suffering with reflux and vomiting bile.
It's hard to know where my intestinal issues start and stop. This feeling of being poisoned/hungover and the feeling like my body is full of lead are all new symptoms.
My vision has changed too, straight lines/edges seem to curve and things move, I probably notice it more as I only have one eye. I also have migraines and can often hear my pulse in my ears as it is pounding so fast. I can barely get up my stairs without an issue and virtually housebound.
I am suffering from low grade fevers and then being extremely cold.
Food smells make me want to vomit but then I get extremely hungry. Again these are different issues to my normal gastrointestinal symptoms.
Does any of this relate to others and can anybody shed light on my blood results and my symptoms please. Is this something I should be concerned about? I fear waiting a few months could cause me some serious damage.
Thank you all, I appreciate any feedback you can give me as I am desperate.
Written by
Bellao01
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Well, I sympathise as you seem to have a lot going on. I'm not able to help interpret your results too well but, on reading, somethings do spring to mind, particularly as symptoms of B12 deficiency.
So, as I see it,
MCH - Raised levels suggest Macrocytic red blood cells
MCV - High levels also suggest HypOthyroid or B12 deficiency
Red cells - low, again suggestive of B12 deficiency
Ferritin - Raised, could suggest HypERthyroidism, Liver disease, Rheumatoid Arthritis/other inflammatory disease OR Metabolic Syndrome
C-Reactive Protein high- possible inflammation
RDW - High - suggestive of Iron / Folate or B12 Deficiency
It certainly looks as if B12 deficiency may well be the reason for your results.
Regarding raised Ferritin and high MCV, they seem to contradict each other as signs of thyroid disease (but this is only MY interpretation and I'm not a doctor, or health professional so please don't take MY interpretation as 'gospel')
You mentioned 'pancreatic insufficiencies', having hypo's then hyper's. High Ferritin could be due to 'Metabolic Syndrome' or Insulin Resistance but you say you're not diabetic. Have you heard of Reactive Hypogycaemia? Might you be experiencing this. I would suggest you check out RH on diabetes.co.uk forum, on their Reactive Hypoglycemia forum and also, perhaps, check the Type 3c (Pancreatic) Diabetes forum. I think you might get some good information from the members on there (very helpful bunch, as on here )
I don't feel I can offer anything regarding Vit D levels not improved since high dose Vit D. Maybe you have a significant absorption issue, which affects not only B12 but Vit D as well - just a suggestion.
To summarise, I think your results point, quite clearly, to B12 deficiency, Folate deficiency and possibly Reactive Hypoglycemia. It's not as if you've not got enough to contend with, eh? I'm pretty certain that, if you could get these deficiencies sorted, you'd be feeling like a Spring chicken
Please remember, this is only MY interpretation. I'm not a professional with this knowledge or experience. I think you need to do some research (others will suggest some links later today, I'm sure) and then have a long chat with your GP. My best wishes J
It helps a lot to see it listed the way you have and gives me areas to research.
My GP tried to get me sent to endocrine clinic but they refused point blank to see me as my hypers/hypos they say are due to my stomach, they totally ignored the pancreas situation.
My oral glucose test was 2.8, my gastric emptying study showed my stomach dumps food out undigested 100% of food within 50 mins. This then rushes through to colon where it is delayed by a over a week causing obstructions.
In regards to being diabetic my doctors have not done any tests since 2015, I will definetly head over to the forum you suggest as I did not really think further than being or not being diabetic. The pancreas to create calcifications is scarred from attacks so the things you have mentioned are very possible, add in dumping syndrome and slow colonic transit constipation, very possible indeed.
Everything points to malabsorption but my docs seem to have blinkers on, I don't see how they can say my bloods are normal, in the meantime I am going downhill fast.
I do not know anything about hyper/hypothyroidism so that is something I will research, thank you.
It seems my B12 and folate has been a culprit all along but as I was unaware of the problems it causes, I failed to research or be persistent with my doctors.
My folate and VitD would fall in with malabsorption.
I have just compared my 2015 and 2017 blood results and my White Cell Count has risen from 5.3 to 7.2.
The Neutrophils have raised from 42% = 2.2 to 64.3% = 4.6.
The lymphocytes have lowered from 40.9% = 2.2 to 26.2% = 1.9.
The other things in the white blood have also lowered but I am not sure if this means anything as I do not know anything about bloods really.
As for not being a professional, I think the way we research and advocate for ourselves in regards to illnesses, we have actually become specialists in our own right. I thank you so much for your interpretation, it has been very informative and points in me areas to research.
I hope I will be like a spring chicken one day, haha.
Once again, thank you for all the information and for replying. Best wishes back and take care.
I don't think you should concern yourself too much re White cell count, Neutrophils and lympocytes as they will vary. They're to do with fighting infections etc and go up a varying degree depending on the infection so, the issues you already have will probably be playing them like the piano (Sorry, not trying to belittle your other issues in any way - just my weird sense of humour )
Yes, do some research on B12 and you'll come up with a lot of info. The Pernicious Anaemia Society is a very good source (also due to lack of B12) I'm sure others will post some good links or you can find them when reading other people's posts.
I have found some good books to read. I started with
Could It Be B12?: An Epidemic of Misdiagnoses
Sally M. Pacholok, Jeffrey J. Stuart
then -
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency
Martyn Hooper, Chris Steele
and
Living with Pernicious Anaemia and Vitamin B12 Deficiency
Martyn Hooper
Martyn Hooper is the founder of PAS
If you're up to reading, then I would suggest you get these books and have a read. You'll be amazed and really wonder why the medical profession 'know nuffink' ...
Will look for those books, reading may take a while but I'll start in the bath.
I have just been to see gastro surgeon today (my usual one is not there), I asked him to look at my results as I felt I could be anaemic judging by new symptoms......
Well, according to this doctor my results are fine, nothing wrong with me and I am not medically anaemic as my eye is red and not pale!!!
He said that's the only sure way of testing for anaemia, is he kidding me?
I have a good sense of humour if we can't laugh then what's the point.
"He said that's the only sure way of testing for anaemia, is he kidding me?"
Unfortunately, no, I don't think he was kidding
Yes, we have to laugh, eh? It's absolutely crackers how these so-called 'intelligent' people have got so far. They only seem interested in the black/white diseases rather than take an interest in the way technology has given ways to see things in more depth and to treat accordingly.
It seems 'ignorance is bliss' could well be the answer How frustrating is this? How can we trust and respect the doctors when they behave like this?
Just keep your chin up! Keep going. I'm trying to see some hope in all this
I think we end up surpassing the experts with the knowledge we acquire to try and help ourselves or our loved ones.
Hopefully we will all help the silly individuals get educated so they can help others not go through this in the future.
I am going to order repeat bloods and get armed with results and guidelines then see the doctor fully prepared. Thanks for all your help, guidance and recommendations, they are very much appreciated.
Your white cell count being high indicates inflammation/infection. Is there a pattern in this rise? I would certainly discuss this with any gp/specialist as there will be something causing it that will need investigation. Whatever this is it could provide an indicator to why you are feeling so awful.
I speak as someone for who this was, among many other things, absolutely ignored. Much later After going through 'we cannot find anything wrong with you' thing for a couple of years I developed sepsis which they treated as a common or garden kind of UTI. after treatment I quickly relapsed several times. The cause was traced to a spinal abcess hidden deep between my vertebrae. I am not saying that your cause will be the same, why would it be, but that a potent marker for inflammation and infection should not be disregarded, no matter what your other bloods are doing.
I have some very similar symptoms to you, was diagnosed then de-diagnosed as PA (co-existent autoimmune stuff, including vitiligo, which is a known co-factor) and have all the well reported difficulties getting treated.
Stick with it. If you are feeling this grotty you are not well, and have a right to be investigated properly, not just dumped into a selfhelp ditch.
I noticed my White Cell Count was 10 prior to my sepsis, after it went to 5.3 I suppose from the 5 types of antibiotics they were treating me with and now 7.2 so possibly a pattern. My X-rays showed distended prominent loops in my intestines so I think that was my cause for sepsis.
I am worried that if my Ferritin is high due to an infection or I indeed have picked up some kind of infection that is affecting my bloods, my WBC are not increasing even to ward of that infection.
I am contemplating if a A&E appointment may be necessary to get fluid and a pick me up as I am not sleeping and now my veins/arteries are beginning to hide. These fevers are also driving me nuts, I put on another jumper as I am freezing then get clammy from overheating.
As for the anaemia, they are making out that is not a possibility but my B12 results have always been 212, 232 but never higher in 10 years until now as is my folate steady at 3.1 until this current drop. Both these things and my low VitD suggests some kind of malabsorption. Patients should not have to research and point out the results to a doctor.
How are you feeling now? Better I hope. Does your doctor treat your bloods correctly now and stay on top?
Not at all! Currently has been refusing to treat me for B12 deficiency at all after consulting with my neuro, who really is not a b12 man, but previously helped me make a case for a trial of bi-weekly injections, which really did help me immensely. But no treatment at all since.
They would have isolated a cause for your sepsis. There is a sepsis support website, sorry no web address, but the info there is good. Some of the things you are experienceing could be down to that. We can all get out of whack after a big illness, and sepsis is underrated in a lot of ways. There isn't a quick bounce back, the antibiotics will have knocked out infection, but don't repair the damage done at cellular level and to various body systems, only time does this. I am slowly regaining ground, another friend is also finding this takes time.
I hope you can get your doctors on board to help you. Thus far the excellent work done by the NHS in saving my life has not been followed up by my GPs, though for a while I had the most excellent District Nurses, Rapid Response and OTs.
I am sorry to read that. Why are doctors so down on treating bloods that essentially could stop us getting so unwell?
My gp is great normally and my gastro doctors are all highly rated but I am at that stage where I am waiting for the psych team as apparently I need to become stronger for next stages of my illness. My specialist said that I will probably end up on TPN feeding but at least I won't be in chronic pain with my body shutting down. I would rather the pain and be able to use my stomach. This is why it does not make sense they are not treating the bloods when they all state I can not absorb my food even with digestive enzymes to help my pancreas. It feels like the cheaper option is to let me get ill now. I am so confused. My sepsis was in 2015 and I never felt this bad despite staying in hospital nil by mouth for a week.
I understand what you mean about the recovery as I have not been able to work since.
I truly hope you get some help yourself so that you do not escalate into further infections.
With deficiency disorders it isn't all about achieving ideal blood levels, we are after all not all the same. It is about finding the right levels to get you to the optimum wellness for you. I agree that treatments should be about making us well, but treating blood is not really the way to go, it is part of the mistake many doctors make, an over reliance on blood tests that are not always very sound. When your results rule you in with B12 , for instance you will get treated, but it is already proved that you can have it AND come within the serum test 'normal'. And as it is not just a deficiency but also a health condition if not treated it can get worse if not recognised. It is just very hard to diagnose and most doctors have not been trained to do so.
It has taken a big toll on my life, a new doctor is needed. But that means jettisoning a practice that is aware of my other health issues.
Others have the same issues. We do in fact have to become our own best advocates. I am useless at that and much better on behalf of others! But still the message has to be educate yourself and be able to be very objective about your own health. It is all to easy for busy GPs to sense our anxieties and put them down to emotional causes. In your case you have a lot going on, and they should be working to keep you well as not doing do is a false economy, and not in your interests.
i am so new to this blood thing, I knew I had low B12, B9 and VitD, but yo be honest have never researched or paid attention until my last test as that coincides with the ferritin, CRP and feeling so unwell.
I understand about the gps, my one has only 1 doctor in the clinic, I get seen within a few days and the appointment is not rushed. I have moved recently so my gp is further away but she knows my gastro problems as she has been there from my very first operation that went wrong.
I am reluctant to leave because of her and she is worth braving the London traffic.
I think my main worry is that my bloods can be masking an infection and because of my gi issues I may wait to long before seeking help.
It looks like I have a lot of reading to do. Tanks for all your input and I hope you manage to find the help you need without having to lose the support you get from your gp. Wishing you all the best and take care.
high serum B12 after shots - even 18 months after shots doesn't really mean much unless it is low 483 could be low.
You are definitely folate deficient again and this will cause macrocytosis and symptoms similar to those that you are feeling, as well B12 deficiency.
the acid reflux may be a symptom of low acidity - symptoms are just about the same as high stomach acidity. Low stomach acidity will cause problems absorbing a number of vitamins and minerals and could explain why your folate is low.
have you ever been tested for PA? IFA is notoriously prone to give false negatives so a long way from proving that you don't have PA ...
Every few years my gastro doctors do token blood tests to appease me I think. The results are then left up to my GP to analyse and medicate. This is the part that keeps breaking down sadly. My gp thinks my gastro should treat me, my gastro thinks my surgeon should treat me and my surgeon thinks the intestinal failure clinic should treat me. 🤔
Even with the blood results quite clearly having asterisks and figures with high/low written next to the ranges all in red, they are still ignored.
So short answer, no, I have never been told I have anaemia or anything wrong with my blood despite the results showing my ranges are out of whack.
IFA? Sorry not sure of the abbreviation.
I do have a rolling hiatal hernia and will not have operation as had 3 already but my stomach just wants to sit in my chest. Therefore your theory of low acid is probably very likely and so is bile refluxing into stomach.
My gi doctor yesterday wanted me back on omeprazole but I said no because if it is malabsorption, reducing my acid levels further will not help.
I just know deep down something is terribly wrong and I feel like my doctors are playing a dangerous game by leaving me to see what happens.
Judging from many of the posts I have read on here, this seems to be a common problem sadly. Thank goodness for sites like this and I thank you all wholeheartedly.
personally my advice would be - get your gastro to acknowledge in writing that you have problems with stomach acidity that will lead to absorption problems including B12, folate and iron absorption and that you will need to be treated for these absorption problems. If you are in the UK then that means that you should be put on B12 maintenance shots for life not just when your serum B12 shows a low value.
Then go back on the omeprazole - as it won't affect the B12 once you are on maintenance shots ... though there is no guarantee that 3 monthly shots will be enough
IFA = intrinsic factor antibodies - the recommended test in the UK specifically for identifying PA as a cause of B12 deficiency - but it sounds like all the surgery you have had and the gastric problems already existing may have caused the problem. Did any of the surgery you had affect your ileum?
Thank you for all your advice and yes, I will do that.
I have a lot of reading to do from all the great information I have been given on this post and when I go back I will hopefully be as confident about this subject as I am in the knowledge of my enteric system.
This site has been a life saver as it is great to get feedback from others in the same situation but for different reasons and each one can teach one, the best way to learn. Wishing you all the best andvonce again, thank you.
Thank you, never had that test done. The surgery was a Nissen Fundoplication to stop acid reflux and cyclonic vomiting. It went wrong and my stomach broke off in my chest, in trying to fix my stomach and redo the NF, my vagus nerve was sacrificed. It seems my body tries to expel my stomach contents through vomiting but as this was a symptom and not the cause the 2nd operation went wrong too. My pyloric valve then stopped opening so my stomach would not drain, my surgeon then done an emergency pyloroplasty. He cut out my pyloric valve which has basically left my stomach like a sink without a plug so I do not retain any food to mix with acid.
They then found my duodenum has brunner gland hyperplasia and would also not retain the contents of my stomach to mix with bile so I am dumping into large intestine. My latest tests have now shown that my colon has stopped functioning properly and is very delayed with weird contractions. Tests also showed failed evacuations through rectum ballooning, basically my body believes I have obstructions and things stop moving. My esophagus has also lost contractions and my stomach has now broke through two areas of my diaphragm on both sides of esophagus so my contents keep going back up into chest but with the rolling movement it keeps getting trapped. Unlucky for me, I have lost the ability to vomit so it is a battle of eating, nausea and pain. My pancreas has stopped producing digestive enzymes and it looks like I was vomiting from pancreatic attacks but they were missed despite amalaysea being high with low vitamins from 2007. The calcification in pancreas puts the timeline of approx 10 years of attacks causing scar tissue and the probable cause.
Then came the sepsis and now intestinal failure apparently, but I will not give up on eating but don't have the strength to fight with the way I am feeling with this new infection/poisoned feeling and new symptoms, I am beginning to not want to eat and as I am already limited in what I can have, that's not a good sign.
Sadly, I was unlucky as the reflux was only the symptom and had I researched, I would have realised that there was something causing the cyclonic vomiting syndrome. I don't want to follow blindly again and the reason I am trying to find out as much as I can.
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