Pernicious Anaemia Society

Elevated creatinine kinase - B12 deficiency link?

Hi all! The latest in my ongoing health saga is that the latest blood test has shown creatinine kinase levels above the normal range (mine has come in at 299 U/L). I know this can be related to muscle issues but wondered if it can be specifically related to B12 deficiency.

I still have no diagnosis, have seen a neurologist, haematologist and lately a rheumatologist (who asked my GP to conduct a full range of blood tests, much to the GP's annoyance!!). I am SI once every month and find that I am able to do light exercise again. The usual good days and bad days but trying to adopt a more positive approach as I fear I was slipping close to a depression a couple of months ago, which might have been down to quitting all exercise because of the fatigue and general all over back pain, or simply down to GPs nor taking me seriously and frustrating the life out of me!

Anyway, any help and guidance much appreciated.

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Hi Rheadster72.

Raised creatinine kinase (CK) can be due to a number of things...muscle damage, muscle wasting, or number of underlying medical conditions that cause either.

A high or above normal can also be found in those with large muscle mass.

Whilst a raised level is not a direct result of B12 deficiency, it is a recognised outcome of muscle wastage through inactivity...and some people with B12 deficiency do become quite inactive...so an there is a potential association.

Levels that fall over time indicate that damage is healing and levels that continue to raise or,persist over time indicate that damage still present or still still occurring (I.e. as in disease progression).

Top of the reference range for men is in the region 195U/L and serious damage or disease can raise levels up to 100 times above normal...and your level is currently not in that category.

Interestingly, recent IM injection can cause CK levels to rise: don't know by how much or if there's a possible connection there. Don't have time to look further right now, so just a thought.

Here's more information about creatinine kinase:

labtestsonline.org.uk/tests...

And something else from GP Notebook (but don't know how up-to-date this is - it's certainly not much use for B12 deficiency (but then that's sadly not unusual).

gpnotebook.co.uk/simplepage...

Pleased to hear that you're doing a little better...and trying to be positive (not easy when dogged by this nasty beast B12d).

And yes...GP's can drive to distraction...so many here will be able to identify with that. Unfortunately.

Good luck with your drive to get well 👍

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Thanks, that's very helpful

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Hi,

"I still have no diagnosis, have seen a neurologist, haematologist and lately a rheumatologist"

Has GP considered referrals to endocrinologist, gastro-enterologist or immunologist?

Have GPs excluded common auto-immune conditions including lupus?

I looked at one called Hughes Syndrome (also known as Antiphospholipid Syndrome)

aps-support.org.uk/about-ap...

I am not medically trained.

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To state the GP is useless would be an understatement. He is persistent in trying to get me on antidepressants rather than trying to figure out what is actually wrong. Two of the consultants I arranged privately; when the rheumatologist provided the GP with a shopping list of tests (many to rule out autoimmune conditions), the GP threw his toys out of the pram and got very shirty. Basically comes down to ego and his wish not to be treated like a PA to secondary care (when private).

I'll see what the rheumatologist says next time I see him. Also got ENT and haematologist next month. If nothing diagnosed, I'd then start considering other disciplines.

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Redheadster,

Going back a few years my Husband had high Creatin Kinase and I researched that it was linked to Low Free T3 thyroid bloods, I told the Doctor that Creatin Kinase had an inverse effect on Free T3 bloods, Doctor was surprised I knew this as they were unaware themselves, so Free t3 blood was done, it fell in the bottom third of the blood range, I knew it was low in range, but nothing was done. We later found out ourselves that Hubby's breathlessness was actually down to low iron, not asthma as Doctor said it was. Hubby supplemented iron pills and we think Hubbys Free T3 bloods have now sorted themselves out, but Free T3 has not been rechecked.

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