vitamin d

[pennyoh]

Hello I am new on here and wondered if someone could answer a couple of queries for me please.

I have just been told I have low vitamin d and need to take tablets. Is it common for ms sufferers to have low vitamin d?

Also I was told I have ms after suffering symptoms for a number of years.I have just seen a new neurologist and they have said I do not have ms but functional weakness. My GP is worried about this change of diagnosis and feels I need to see yet another neuro. Has anyone else heared of Functional Weakness.

The new neurologist tested me in their office the usual basic tests and I failed two of them, walking on my heels and the tandem walk which I always fall on! still say its functional weakness. However low vitamin d levels are not associated with functional weakness.

Just wondered what people thoughts are on these things.

Thank you

[Lulu54]

one of my fav sites to interpret lab test results is

labtestsonline.org

You can select what country you are in and then learn about all these different tests, what they mean/look for and how the values are determined.  

This site is run by lab scientists and is an incredible resource- I'm glad to have this chance to tell you about it.

best, Laura

[pennyoh]

Thank you very much. You have been very helpful.

[mariedc]

Just looked this up, and I said something wrong.  Low folate, not high folate, can cause falsely high B12.  Your folate is on the low end, so your B12 may be falsely high.  Here is a site with links to solid medical pages:

http://b12deficiency.info/assets/pat-kornic-testing-f.pdf

Also re: your Vitamin D, I realize you were using nmol/L rather than the ng/ml I am used to.  Your 38 is about 15 ng/ml; definitely a deficiency.  The cutoff for the range is 30 ng/ml, the same as the 75 nmol/L you cited.

[pennyoh]

Yes it says on the results paper that vitamin d should be at 75 nmol/L or above at all times. my doctor seems to think my B12 results were ok and no further action is required.

Thank you again for your help

[mariedc]

Penny,

From what I can tell from your numbers, your vitamin D at 38 is your best one, but that's the only one you are supplementing.  Your B12 at 322 is lowish, and your folate is definitely near the bottom of the range--not so sure that last is a problem.  

I'd have my doctor test for homcysteine (HCY).  That can be high from either a B12 or folate deficiency--you can't tell which.  HCY levels also should not be slavishly adhered to.  Some of the ranges put the upper limit at 15.  But HCY should be higher as you get older or if you are male.  15 is okay for an 80 year old man, but not for a younger woman.  Mayo and Cleveland clinics think it should be no higher than around 10.  

I'd also have an MMA done--that is much more better at pinpointing a  B12 deficiency as B12 itself can be high for other reasons.  (One of which is high folate, not your case.)

Your ferritin at 15 is definitely sub-optimal.  The normal range for females is 12 to 150. Some have said one should be suspicious about a normal range that is that wide (for men it goes from 12 to 300!).  The low end just means if you dip below it you have a serious iron deficiency.  You don't want to get that close!  A neurologist we saw said it should be above 50, and I see that on a number of places on the internet.  But it should be taken in the context of other lab values like TIBC.  

None of this has anything directly to do with MS, but these levels definitely could all contribute to feeling generally unwell, so I'd tend to them.

[pennyoh]

Your levels were very very low. I wish you all the best and yes i also think another scan may be useful. I am so sorry about your ms.

[Heather1987]

Hi Penny, I have MS and also have low B12 and Vit D. My B12 was 132 at ist lowest, but now remains higher with injections. My Vit D was 22, so I now get 800iu day also on prescription. Think I would ask for another scan. Good luck

[pennyoh]

My last mri was in 2011, I believe there were lesions present but now this current neurologist thinks my head pains have caused them, I have terrible sharp pains in my head and suffer bad headaches, this causes balance and speech problems. I do not now any more than that regards my mri, I had two mri and a ct scan in 2011 and nothing since, I was surprised she did not have me have another scan.

Kind regards

[kwarendorf]

The new neuro did make a decision quickly. In addition to her exam, was she presented with previous test/MRI results?

If you've had MRI's, what were the findings?

Kyle

[pennyoh]

Just to add the new neuroligist tested me in their office doing the usual walking and strength tests etc, as I said I failed some of them but it was after that one consultation she decided I didnt have ms.

I was surprised she came up with a diagnosis after only one visit. Whereas before It took them 3 years and many many visits to the neurologist before a decision was made. It is like being back at the beginning again!

[pennyoh]

It was only a few months ago when first told I had ms after under going many tests etc. I have a new neurologist as my old one moved away and retired. My GP then referred me to a new neurologist at a different hospital and where they have more specialism and ms specialists in this area. That is why I now seem to have a new diagnosis as well.

The only thing I worry about is if they have rushed my new diagnosis and got it wrong, i dont want ms but on the other hand I dont a mis-diagnosis either!!

Thanks for your help

[kwarendorf]

Hi Penny - Welcome to our forum.

Vitamin levels, D and B12, are not the basis for an MS diagnosis. While low Vit D levels are common among folks like us, it is not a diagnostic criteria. B12 levels are important because there is some symptom overlap between MS and B12 deficiency.

You mention that you were told you have MS. Was this by a neurologist, and if so why the switch to a new neurologist? Were either neuros MS specialists?

Kyle

[pennyoh]

Thank you for your help. I have my blood results and they seem to be the following:

Serum b12 levels 322 ng/L
Serum folate level 3.4ug/L
Serum ferretin level 15.2 ug/L

I have my vitamin D supplements as my levels were at 38 nmol/L

I dont really understand what is a good number for B12 but it seems at the moment they are ok.

Thank you any way for your help

[mariedc]

MMA and HCY are tests that complement the B12 test.  B12 is a bit notorious for not actually being that good an indicator of your B12 levels, except when things get very bad--near pernicious anemia range.  

And there are a lot of disputes about levels.  US labs put the lower range of B12 at 200--when you get low enough to be below chances are you already have pernicious anemia.  But you can feel quite ill well above that level.  Many doctors put treatment range at below 450; in Japan the low end of the range is 550--a huge difference from our 200.  

Where there is a borderline B12 (between 200 and 450 or some doctors would say 500)  the MMA or HCY can be used to determine if there is a B12 problem.  A high MMA with borderline B12 indicates a B12 deficiency, as does  a borderline B12 with a high HCY in absence of low folate.

You should get your actual levels from your doctor for both B12 and Vitamin D.  They fairly recently raised the minimum level for Vitamin D so many more people have been identified with a deficiency, but they have not done so for B12 and some doctors will say if you are above 200 you are fine.  But 250 or even 300 is not a good number.

[pennyoh]

I have had my B12 checked when they tested my vitamin D, my B12 has come back normal. I do not know about the other two you mentioned but in the past I have had quite a lot of blood tests carried out.

I am still under a neurologist for on going appointments so at least they are not leaving me in the lurch, as you say.

Thank you for your in put.

[mariedc]

I think perhaps thee are some fine distinctions between functional illness and somatoform or conversion disorder.  But they are all often used interchangeably.  What the new neuro is saying is he doesn't see any organic cause for your issues, but you are not feigning them.  Thus, the source is more psychological.  If they feel this way, by the book they are supposed to do things like refer you to physical therapy and perhaps a nutritionist for diet, as well as to a psychiatrist and periodic re-checks.  More often, they'll just say it's functional and you don't need to see me anymore, leaving you in the lurch.  

Good for your GP being worried about this diagnosis.  You very definitely need a second opinion. Iit does not sound like Vitamin D could cause you to fail the two tests you did.  Have your B12, MMA, and HCY been checked?

[pennyoh]

Thank you

[PeninaD]

Absolutely it is common, and is the subject of much recent study.
What is starting to show may be that even normal may not prevent/protect MS damage, that higher than normal levels may be needed for MS treatment.
If you would like to learn more about current research, download the 2014 research update from http://mymsaa.org/publications/msresearch-update-2014/ , specifically page 35, right hand column.