New to site: I am new to this site but... - Pernicious Anaemi...

Pernicious Anaemia Society

31,806 members22,935 posts

New to site

Foxie1234 profile image
14 Replies

I am new to this site but been advised to post my blood test results for comment on this site.

VITAMIN B12 341ng/L. 190-800

Folate. * >24.0 ug/L 3.9-14

Ferritin. 33 ug/L 13-150

Haemoglobin 126. g/L. 115-165

I had a total thyroidectomy in June & have been on Levothyroxine since. If anyone could comment on these results I would appreciate it.

Written by
Foxie1234 profile image
Foxie1234
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Foxie1234 profile image
Foxie1234

Thanks for your reply. I took Folic Acid a while back, but not recently. The reason I asked on this site is because I usually follow on the thyroid uk site and I posted my results and it was suggested I post these on this site. As long as all is ok.

fbirder profile image
fbirder in reply to Foxie1234

Some of those TUK people seem to have developed the idea that any B12 level below 500 g/ml is deadly.

Your levels seem fine.

Polaris profile image
Polaris in reply to fbirder

cmim.org/pdf2014/funcion.ph...

"Summary points:

Vitamin B12 deficiency is a common but serious condition

Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment

There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance

There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency

If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features

*. "However, it is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay.4 13"

JMN2017 profile image
JMN2017

Isn't the high Folate level possibly indicative of Vit B12, though?

I've also read in many places that some clinicians feel that 500 ng/L should be the cut-off point to indicate possible B12 Deficiency so, fbirder , I'm now a bit confused as to what you have posted, although I bow to your extensive knowledge. Would you be prepared to explain, please? Many thanks

Gambit62 profile image
Gambit62Administrator in reply to JMN2017

The B12 serum test is one that can't be used as a single measure - need to look at symptoms, though that can be problematic when there are other conditions that have overlapping symptoms, such as thyroid. Advising someone that their levels are low purely based on the the result of the test is potentially as problematic as saying that you aren't deficient because you are in range. The test lower end of the normal range is, generally speaking, going to miss 25% of people who are B12 deficient. The flip side of that is that most people are okay in that range and don't need to supplement ... and certainly don't need to supplement with huge doses of B12 where there is isn't a B12 deficiency which would have been ovcious if symptoms were looked at. About 5% of people with levels below the normal range will also have levels that are adequate for them ... so symptoms are really important. Under normal circumstances it is unlikely that someone who was unsymptomatic would be tested but if peole are just testing minerals and vitamins - which is often the case on TUK - through private testing - then the step of evaluating symptoms just gets missed out of the equation completely.

Setting the level higher, when looking at people who are being tested for B12 deficiency because they have come reporting symptoms means less likelihood of dismissing someone who has a deficiency as in error because of using a range that is known to be problematic, but the starting point is still the clinical presentation - the symptoms, not the test result as a single measure/diagnostic tool.

fbirder profile image
fbirder in reply to JMN2017

if you suspect a B12 or folate deficiency then get an MMA and a homocysteine test done.

Gcart profile image
Gcart

With all respect fbirder no has suggested B12 less than 500 is deadly. However it has been said less than 500 could be less than ideal, if symptoms are present

helvella profile image
helvella in reply to Gcart

I think we have seen a stream of "must be over 500" comments over the months.

Marz profile image
Marz in reply to helvella

..... I am more inclined to mention in replies that a result under 500 could present with neurological symptoms. Nothing as dramatic as below 500 is deadly :-) Forgetting where the car keys are is considered a neurological issue ! Cognitive decline - Sally Pacholok thinks it should be even higher to prevent .... Maybe us Hypos need more than those without.

Measurements vary too !

Polaris profile image
Polaris in reply to Marz

I agree absolutely Marz. Hashimoto's means higher risk of B12 deficiency, and devastating consequences if treatment of neurological symptoms is late and insufficient.

It appears the latest BMJ research and BCSH guidelines also agree :

"Pernicious anaemia is one of a number of autoimmune diseases, including Hashimito disease, type 1 diabetes, vitiligo and hypoadrenalism, which may coexist together."

"During investigation of pernicious anaemia, other autoimmune disorders may be found to co-exist, particularly thyroid disease and type 1 diabetes, and it has been suggested that investigation for these should be considered. There are no guidelines on screening for pernicious anaemia in other autoimmune disorders and each case has to be judged on individual clinical features".

fbirder profile image
fbirder in reply to Gcart

Some people say that levels greater than 500 are needed to prevent damage to the spine. Damage to the spine can be fatal.

The same source reckons that B12 needs (needs, not should) to be above 1000 in the elderly for the same reasons.

Utter nonsense. That's above the upper range of some assay ranges I've seen reported here. So she reckons that elderly people are at risk of neurological damage if they have levels of B12 low enough not to blow up the assay machine. (For the literalists that obviously don't recognise it, that's another example of hyperbole).

Polaris profile image
Polaris in reply to fbirder

A little light reading for you, particularly :

'Do we need to reconsider the desirable blood level of vitamin B12? Smith, A. D. and H. Refsum. J Intern Med (2'

sciencedaily.com/releases/2...

pharm.ox.ac.uk/research/ass...

BTW, David Smith is a professor emeritus at Oxford University and I believe has lectured at a PAS conference.

PS. I found the above information on my relative's BM care homes'website - he is an adviser on dementia.

Polaris profile image
Polaris in reply to fbirder

If by 'she', you mean Sally Pacholok:

From her excellent book, 'Could it be B12?:

"Since evidence suggests sub normal B12 levels contribute to Alzheimer's, it's crucial that we educate the health care community and the public about this apparent association, develop screening protocols, and initiate early treatment for B12 deficiency, as well as keeping serum B12 levels above 1000 pg/ml in older adults. Researchers should pursue the evidence aggressively, and hope that it leads to real progress in treating and/or preventing this insidious disease.

In the meantime, it is crucial for families to serve as advocates for patients with dementia."

Sally and her doctor husband worked for years on the emergency frontline of a large city hospital seeing the many results first hand of under treated B12 def.

Polaris profile image
Polaris

Welcome to the site Foxie.

Your serum B12 would be considered low in other European countries and Japan and bearing in mind "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml" - Could it Be B12?" By Sally Pacholok, and the higher risk from thyroid disease, any neurological symptoms you may have from reading the list in the B12def. link given below should be treated according to the UKNEQAS guidelines below:

Not to treat would be risking irreversible neurological damage as there is no gold standard test.

ukneqas-haematinics.org.uk/... :

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord."

b12deficiency.info/b12-writ.... (and an excellent film)

cmim.org/pdf2014/funcion.ph...

The above UK research document is supported by many research papers and has a useful summary if GP won't read full document, It also tells your GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.....

You may also like...

New to site, not new to PA

ramble, so HI and I'll be around, reading posts, and commenting if I have anything useful to...

New on site

I've been feeling terrible, breathless, pain everywhere, clammy and asked for my blood results. I...

Ampoules arrived OK from new versandapo.de site

saves me doing 2 jabs per day. This is the only site I have found them (has anyone else seen them...

Hi new to this site

return. Any advice appreciated FOLATE 2.33 (2.50 - 19.50 NG/L) VITAMIN B12 228 (190 - 900 PG/L)...

New to site and wondering if I'm going slightly nutty 🙄

little bit. Just had a private blood test as gp would not repeat my vit B12 test as it was 267...