Advice before discussing private blood result with doctor please

[BERTIE4500]

Hi, I am trying to get to the bottom of a list of unusual symptoms.

GP ordered various blood tests, notable results as follows:

Serum Folate 1.7 (4-26) Deficient

Ferritin 38 (30-300)

Vitamin D 42 <50 Inadequate

MCV 94.8 (76-98)

MCH 31.4 (27-32)

Only tested total B12, result was 325 (180-770), so no follow up. Reading up on symptoms, total B12 is not always reliable, so I did a Medichecks test for active B12, result was 32.8 (37.5-150)!

I am planning to speak to the GP about this tomorrow and to request testing for PA, but would welcome advice from this group before I have that conversation. Do you agree that PA is a possibility based on my results to date?

Thank you!

[wedgewood]

You haven’t mentioned any specific symptoms .What are they ?

[BERTIE4500 in reply to wedgewood]

It's a long list, including fatigue, lightheadedness, memory/focus problems, disturbed sleep, nail ridges, beefy tongue. I know from the blood results I have a folate and active B12 deficiency, which could be causing the symptoms, my question was really just whether the results fitted with the reason behind those deficiencies possibly being PA as my total B12 was in the 'normal' range. I just want to speak to the GP armed with as much information as possible.

[wedgewood in reply to BERTIE4500]

If you can do find posts written by Sleepybunny , who has huge knowledge and gives links in her posts that will be very useful for you . Your symptoms, combined with the low folate and the active B12 result from your private test , would certainly indicate P.A. It is a known fact ( but unfortunately not known /acknowledged by doctors ,) that the common or garden B12 serum test can include up to 80% inactive B12 , which the body cannot utilise .

An easy, harmless and cheap way to find out if you have P.A. would be for your doctor to give you B12 loading injections . We self-injectors know how cheap they are (about £1.50)

———————————————————————————————————

How to diagnose Pernicious Anaemia

By elimination

if you are not vegan or strict vegetarian.

If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any acid-negating preparations and other pharmaceutical drugs ( look up on the internet )

If you do not abuse Nitrous Oxide ( laughing gas)

If you do not have fish tapeworm

If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———

Low serum B12 / Low active B12

Symptoms of B12 deficiency (Google to find out - and there are many symptoms.

Gastric atrophy restricted to the corpus and fundus

Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection

Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized

Hypergastrinaemia (various causes including Helicobacter Pylori infection .) Of course a positive result for an Intrinsic Factor Antibody test( IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative.

High Homocysteine occurs in Pernicious Anaemia patients , but there are also other causes.

High levels of Methylmelonic acid can also be indicative of Pernicious Anaemia.( In blood or urine )

Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above . I did get a conclusive diagnosis ( lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, and have to cope with the irreversible symptom .

Reading posts on the forum has been very informative. Best wishes .

[BERTIE4500 in reply to wedgewood]

Thank you so much for such a comprehensive response. I am sorry to hear you had such a difficult time getting a diagnosis, it is such a shame there seems to be so little knowledge amongst doctors. I hadn’t considered asking for B12 loading injections, so will definitely add that to the conversation. Thank you again.

[Gambit62 Administrator]

Suggest you point your GP at the BCSH standards published a few years agoonlinelibrary.wiley.com/doi...

in particular highlight that

a) there are a number of problems with interpretation of both serum b12 and active B12 that make symptoms very important.

b) the fact that you have folate deficiency makes it more likely that you have a B12 absorption problem and hence a deficiency

c) B12 deficiency should be treated before a folate deficiency - though the time difference only needs to be 24-48 hours after your shot.

You should also talk about your diet and make it clear that your diet contains plenty of B12/folate so the deficiencies aren't related to diet.

[FlipperTD]

Scientist, not medic.

Don't get hung up about the active B12 level; it's only just sub-range, and given that the range is almost certain to be a 95% range then it's hardly deficient. Given that your serum B12 is well into the reference range quoted, my guess is that you're not B12 deficient but youre folate level is low. Without knowing the methodology involved in sample collection for the Medichecks sample, I would be far more confident in the total B12 sample quality too, but that's just my take on it. Sample quality is something that's often overlooked, but it can seriously impair the quality of the results.

You're doing the right things, asking the right questions. Good luck.