Vitamin B12: Good Afternoon. I was wondering if... - LUPUS UK

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Vitamin B12

crista1 profile image
10 Replies

Good Afternoon.

I was wondering if someone could help me in relation to blood test results I recently had done via my surgery checking for low levels in VIT B12, Folate and Ferritin. A full blood count was done also. I am being investigated for a range of conditions inclusive of hughes syndrome and Lupus. Recent ultrasound showed small cyst on left kidney an enlarged right kidney and fluid being retained in bladder after going to the toilet. Further investigations to follow.

Serum Vitamin B12 = 157 ng/L (Range 150-620)

Serum Folate = 3.6 ug/L (Range 3.1-19.9)

Serum Ferritin = 16 ug/L (Range 15-200)

In the full blood count the Lymphocytes were 3.0 (Range 1.0-4.0) but the percentage Lymphocytes were at 47% (Range 15-45) which was marked as high.

Not sure if the levels for VIT B12 etc are out. Does anyone have any ideas. Any feedback would be greatly received?

Kind Regards

x

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crista1
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Yes your B12 level is really low. You can get much better information on Thyroid UK's HU about this than I can give you as Pernicous Anaemia goes hand in hand with thyroid disease, Hughes etc. Put someone called Hampster into the HU search on that site and you will learn loads about B12 deficiency. I can only tell you that your level is very low and I'm sure people there would say this needs addressing urgently. There is also a Pernicous Anaemia HU community.

crista1 profile image
crista1 in reply to

Thank you Twitchytoes. I'm now worried due to the fact my g.p told the surgery secretary to tell me that it was ok??

Unsure why she said this!!

I've even looked at the results again in case I was misreading, but it does say 157ng/L.

I will read up and recontact my surgery next week. I know she hasn't any appointments until a week tomorrow. I attended at London Bridge hospital privately a month ago and the professor there felt I had Hughes but he wants me to go back under the NHS so he can complete tests and procedures but my G.P as to agree first.

Maybe that's why I am feeling so shocking and tired all the time. Thank you again. Your a life saver xx

in reply to crista1

Oh I didn't want to get you more worried - sorry! I just know from the many very knowledgeable and experienced users on Thyroid UK that the doctor's idea of normal range and the Pernicous Amaemia Society's idea are very different.

As you've probably done I looked up PA because I have been suffering from severe parasthesia, have hypothyroidism and RA and am waiting to see a neurologist. I read that in Japan anything under 500 is seen as deficient and they have very low dementia rates - B12 is terribly important so I now take it sublingually although my level was about 350 so much higher than yours. I was advised by Hampster to buy Methyl Jarrow B12 and take one 5000 mcg a day or more as you can't OD on B12 - the body flushes excess out.

I don't really trust my GP or rheumy on any of this because I was taking high doses of folic acid with my Methotrexate and this skews B12 results completely but my GP didn't have a clue about this - rheumy did but shrugged it all off. So thanks to Hampster I got myself tested privately using different measuring and I was still within normal range. She told me to take B12 anyway and see if my parasthesia improved. But after four months of taking it I have to say it hasn't made any difference at all! However I found out that I was vitamin D deficient (private test as GP refused!) and found out I was properly deficient for this and went to my GP with lab results. He prescribed AdCal D3 (too low ammount so I take extra) because apparentlyy calcium levels were low too! Hence my lack of confidence in these people.

But with your low level (only just within lab range) I would be asking your GP rather forcefully to let you have B12 injections regularly as you may not be able to absorb it naturally. Don't panic but please do fight your corner if needs be. Twitchy xx

crista1 profile image
crista1 in reply to

Thank you Twitchytoes. I really appreciate the information you have given me. I will definitely be seeing my g.p and asking her why she would say the result was ok when it clearly isn't. I have been really ill over the last year and having all sorts of tests, and found out I had 'small white matter hyper-intensities' in my brain after a MRI scan in April. My memory is shocking, I have headaches and all sorts of pains all over, my vision has been effected, I suffer with 'tinnitus' and recently found out I have hearing loss in both ears and the headaches can be something else. I'm sort of in limbo land due to no firm diagnoses, so on no meds. I will fight my corner armed with lots of info. Thanks agiain xx

You are ever so welcome Crista. I don't know if it is consoling or not to know that quite a few others on here and other health unlocked autoimmune sites are in the same boat with symptoms and lack of firm diagnosis.

For myself I'm back in limboland after being diagnosed with RA in 2011 and trying at least 7 powerful drugs including three DMARDs and failing to tolerate any them. I've been told hypothyroidism and RA are certainties and autoimmunity is too - behind that pathogically dry eyes, parasthesia, circulation issues, fatigue etc are all part of the inflammatory process for me.

But my rheumy thinks that the parasthesia - which is by far the worst symptom I've had (for over a year) is small fiber neuropathy whereas my GP and a professor both think it is Raynauds secondary to my RA. And my RA has disappeared after all these drugs appear to have kicked it into the long grass. It hasn't returned despite three months off all RA drugs at my rheumy's suggestion.

Meanwhile I have strange rashes on my legs, arrhythmia and dizzyness that no one explains or seems concerned about - they just mutter about autoimmunity and shove another drug at me!

So limboland is where I'm at too - a terrible place I know. But we can share our battles to get out into somewhere more certain at least. Hang in there and push hard regarding the B12 - gathering as much information as you can to give your GP. Twitchy xx

misty14 profile image
misty14

Hi Crista

It's a good thing your kidneys are being investigated and you do need to talk to your GP as your bloods are the low side of normal!. Particularly as you say how ill your feeling. Best of luck with it all and don't give up!.X

crista1 profile image
crista1 in reply to misty14

Thankyou Misty14. I shall be seeing my g.p next week with my blood test results showing my vitamin b12 was 126 in 2008 but wasn't picked up. I have only just found this out myself after receiving my medical notes!!

Take care x

misty14 profile image
misty14

Hi Christa

Good luck for seeing your GP this week. Let us know how you get on.X

Howsaboutit profile image
Howsaboutit

They seem to be just in range at 157ng/L

Some gp's will start B12 at lower end of normal if symptomatic as he could test you again to check and it be below range.

crista1 profile image
crista1

Thank you Howsaboutit. I spoke to my g.p yesterday. She said she would agree to B12 injections for a set period of time. I have never had them before although I had iron tablets in my 20's which is different I know. I am awaiting tests for thyroid, lupus plus others and I am a little worried that starting the B12 injections might effect the results although unsure if it would effect them??

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