Some blood results

[lorrilang]

I got some of the blood results today. The one the neurologist ordered in December and that I got a phonecall to say were low are missing. Heres what I have so far.

12/01/2015

Free T4 level 16.5pmol/L Normal Range 9.0-21.0

Serum TSH level 3.00mu/L Normal Range 0.20-5.00

Docs Note TSH Raised TFT no therapy

24/4/2016

Serum Vitamin B12 195.9 pg/mL Normal Range 197.0-771.0

Serum folate 4.30ng/mL Normal Range 4.60-18.70

Serum ferritin 42.6 ng/mL Normal Range 14-186.0

Mean corpusc haemoglobin 32.2pg Normal Range 27-32

Erythrocyte sedimentation 7mm/hr Normal Range 1-30

Serum Creatinine 59umol/L Normal Range 60-100

Free T4 level 15.7 pmol/L Normal Range 9.0-21.0

Serum TSH Level 2.10mU/L Normal Range 0.20-5.00

(given one month of folic acid and b12 tablets)

1/6/2016

Serum vitamin B12 197.4pg/mL Normal Range 197.0-771.0

Serum Folate 17.00ng/mL Normal Range 4.60-18.70

December 2016 Missing Results but phoned and told Low B12 repeat in one month

19/01/2017

Serum Vitimin B12 284.2 pg/ML Normal Range 197.0-771.0

serum folate 5.13ng/mL Normal Range 3.90-26.80 (references changed from 22/11/2016)

doc told me the other day that the last B12 was 225 no idea what shes talking about. Maybe the missing one.

No idea what any of the above means. Anyone shed any light.

[Gambit62 Administrator]

Have you taken any B12 supplements? eg tablets mentioned - and what was the strength of the tablet.

Doctor has assumed that B12 deficiency is dietary rather than an absorption problem - are you a vegan? or do you eat virtually no meat/dairy/fish/egg?

24/4/16 - B12 deficient, folate deficient and signs of macrocytosis - raised MCH - which would be result of the two deficiencies.

B12 Tablets had no really effect given results on 1/6 - but folate levels had risen

19/1 folate levels have fallen again - presumably no longer supplementing - may be indicative of a general absorption problem. B12 levels a bit better but you could still be deficient at this level - really need to know what supplementation actually was/is.

The GP you last spoke to had a very poor knowledge of B12 - though that isn't uncommon, unfortunately.

Not clear from your other posts if you had been supplementing at all and at what doses.

[lorrilang in reply to Gambit62]

The only time I had ever taken supplements were after the 24/4 results. If my memory serves me right I took one b12 tablet (1000) daily and three 5mg folic acid daily for one month. Prescribed by doc as B12 was low. Only time she ever prescribed me anything.

I am not vegan or vegetarian. I eat chicken, pork/plenty dairy. Not keen on red meat as it kills my stomach.

I take no supplements of any sort or on any medication of any sort not even paracetamol lol.

I have had neurological problems for many years and had many MRI scans as GP and nuero suspected MS. All scans clear. The above blood tests are the only ones I have ever knowingly had to check my B12 so I have no idea how high or low it has been over the years.

[lorrilang in reply to Gambit62]

Meant to add. When I phoned for results of 1/6/2016 tests I was told absolutely normal and no treatment required despite it still being 197.4.

So the fact the missing results from December and I got a phonecall from docs saying "your B12 is low no treatment required get it done again in a month" I guess it must have been under 197 as the 197.4 was deemed as normal lol.

[Gambit62 Administrator in reply to lorrilang]

Unfortunately not uncommon for Gps to be unaware of how B12 works and how inconclusive the B12 serum actually is.

If you are based in UK tablets will have been 50mcg - too small to have any effect if you have an absorption problem. Curious thing is rise in levels in January test.

Did you change your diet in any way, eg avoiding gluten?

[lorrilang]

The only thing I did was cut out white bread and full fat milk. Switched to seeded bread and skimmed milk. Everything else is same. Yes I'm in Scotland Uk.

[mrsm49]

So they see yr b12 v low, you have neurological symptoms and they cant see the connection!!! It's v easy to find out that b12 levels below 500 can cause symptoms and the reccommendation is b12 treatment. I've been in same situation myself complaining of numb hands brain fog repeatedly for 10yrs. 15months ago I started high dose b12 supplements (& folic acid) myself after advice here and my numb hands hve gone except if I stop taking it then they come back again. My levels v high now which panics the gp every blood test (pointless now I'm supplementing)

[Sleepybunny]

"So the fact the missing results from December and I got a phonecall from docs saying "your B12 is low no treatment required get it done again in a month"

Have you considered getting a set of your complete medical records, could be expensive eg £50 plus. It's possible that there may be letters in complete records that would give info on missing blood test results eg from neuro to GP.

Have you contacted the neuro to ask for a copy of any letter sent to GP about results you were told were low? It is possible to access hospital records . I'm assuming your blood tests were carried out at the hospital where you saw neuro. It's far more difficult to get copies of hospital records or to see them than it is to access Gp records, in my opinion.

Can involve form filling and a visit to hospital records office. If you look at the website for the NHS hospital you visited, you could search for Health Records Office or ring hospital and ask how to go about accessing hospital records or contacting records manager or patient services manager.

Link about accessing records

england.nhs.uk/contact-us/p...

If you still draw a blank , it's possible that the CAB (Citizen's Advice Bureau) or your MP may be able to help.

citizensadvice.org.uk/healt...

parliament.uk/mps-lords-and...

"24/4/2016

Serum Vitamin B12 195.9 pg/mL Normal Range 197.0-771.0"

Sometimes when B12 is low, and your results above shows low B12 as it is below range, there will be a note from the lab suggesting an IFA test. There may be an exclamation mark next to this result which is a prompt from the lab that this result should be taken notice of.

If you look at the flowchart in next link, it makes it clear that results below 200ng are significant and B12 treatment should be started so I'm struggling to understand why GP seems reluctant to consider treatment. Has your GP seen this flowchart?

stichtingb12tekort.nl/weten...

and the rest of the BSH cobalamin guidelines?

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate Deficiency" should be on page 3 of listed guidelines or put "cobalamin and folate guidelines" in search box.

Scottish b12 petition

Have you seen this?

parliament.scot/GettingInvo...

[taka Administrator in reply to Sleepybunny]

Thanks for the link to the Scottish B12 / PA petition Sleepybunny . Interesting...

[lorrilang]

Phoned my docs for them to hunt down the Decembers B12 that was ordered by neurologist. She said there was just a quick note from him saying to get them repeated as it was 156.

[Sleepybunny]

156 seems very low considering the reference range in your area is 197.0-771.0

Can you get a copy of the note as it is proof that your levels were significantly below the lower end of ref range.

I put all my blood results together so I can see any patterns. Sometimes this can prompt doctors to take notice.

I suspect that the neuro may not be aware of the guidance in the BSH Cobalamin and Folate guidelines.

Perhaps if you have another appt with neuro you could take BSH Cobalamin guidelines with you including the flowchart(link in my post above).

I gave a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency to my GPs. Might consider giving a copy to neuros if I ever see one again. I only met one who was reasonably knowledgeable about B12 and I saw quite a few.

Have you considered writing a letter to your GPs which contains evidence eg blood test results, family history of PA/B12 deficiency, symptoms lists, quotes from UK b12 documents eg BSH Cobalamin guidelines.

b12deficiency.info/b12-writ...

MCH/MCV/ Full Blood Count

I notice that your MCH was high (Mean corpusc haemoglobin 32.2pg Range 27-32 ). High MCH can be linked to low B12. I can't see a result for MCV (mean corpuscular volume). MCV would be part of the full blood count (FBC) along with MCH. High MCV can also be linked to low B12.

Have you ever had a full blood count? See links below for more info.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

It's possible to get a FBC privately if GP won't order one.

I am not a medic just a person who has struggled to get a diagnosis.

[lorrilang in reply to Sleepybunny]

Going to get a copy of those blood results and see what the results of the IF Test are and put everything together with all the advice from all of you and present it to both GP and Neurologist. Xx

[Sleepybunny in reply to lorrilang]

If your IFA test was negative, it might be helpful to show GPs etc that the BSH Cobalamin and Folate guidelines state that it is possible to have Antibody Negative PA (PA where IFA test is negative). See flowchart below.

stichtingb12tekort.nl/weten...

Martyn Hooper, the chair of the PAS (Pernicious Anaemia Society) tested negative on the IFA test more than once before testing positive.

I think his experiences are mentioned in his book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

In the PAS library section on website, there is a document about sub acute combined degeneration of the spinal cord (SACDSC). It's only available to members but info about SACDSC can be found elsewhere as well.

pernicious-anaemia-society....

I think there are some forum members who have showed this to their GPs as an example of what can happen if B12 deficiency is left untreated or inadequately treated.

B12 symptoms lists

I gave PAS symptoms checklist to my GPs with all my symptoms ticked and added any extra symptoms.

pernicious-anaemia-society.... click on Sympotms checklist

[lorrilang in reply to Sleepybunny]

Just checked the blood results there is a Mean corpuscular volume (MCV) it was 96.7fl Normal Range is 80-100.0.

Below is the Mean corpusc haemoglobin (MCH) That was 32.2pg Normal range is 27.0-32.0. Just noticed that has a HI next to it and is highlighted bold.

That was the 24/4/16 result which was B12 195.9 and folate 4.30.

[helvella in reply to lorrilang]

Is there an RDW (Red cell Distribution Width) as well?

[lorrilang in reply to helvella]

Yes 13.0 percent Normal 11.0-16. I have absolutely no idea what all this means lol.

[Sleepybunny]

In my opinion (I'm not a doctor) the fact that your MCH was high (32.2 normal range 27.0-32.0) and your MCV was not far off the top of the range ( 96.7 Range is 80-100) could be significant.

There's a couple of links in my post above (in section MCH/MCV/ Full Blood Count) that mention macrocytosis.

Folate

None of your folate results look very far up the range. Both folate deficiency and B12 deficiency can lead to macrocytosis (enlarged red blood cells). Has doctor said anything about your borderline folate results eg whether or not you need to take a folate supplement? Do you have a diet that contains a good amount of folate?

patient.info/doctor/folate-...

Have you ever had a blood smear aka blood film?

labtestsonline.org.uk/under...

Thought this link below might be useful ...mentions that ideally folate should be in upper end of range (not near the bottom....).

b12deficiency.info/what-to-...

[lorrilang in reply to Sleepybunny]

No I've never had a bloid film (unsure of what that even is).

My GP has never mentioned anything about folate levels. Just once about B12 being low. Gp has just insisted everything is "normal".

When I was diagnosed by audiologist with Menieres (now undiagnosed) he sent me to my Gp with a prescription for betahistine for vertigo. My Gp looked as his letter and immediately pulled up the Google bar on her pc to find outwhat Menieres was as she'd never heard of it. What chance do I have eh.

I eat anything apart from eggs and I don't eat much red meat as it kills my stomach with acid reflux. I am 11 stone so not as if I am underweight lol.