Three cheers for this forum!! (Re Vit D)

[Scottietottie]

Hi 

I've been reading in here about Vit D for a while. I've had peripheral neuropathy for a while. Way back last autumn I out it to my GP that I'd read about vitamin D deficiency and wondered if they tested for Vit D.
Her reply was "No - that testing is usually done via the hospital". So I was kind of dismissed. Later in the autumn she referred me to that HORRIBLE neurologist. He wouldn't even have a conversation about Vit D.  I left a copy of Moisture Seekers, which had an article about Vit D in it with my doc and asked if others in the practice could read it too.

I bought VitD and calcium supplements myself and I also take 3 times the recommended dose of fishoil every day. (I take it for my eyes and also constipation but I know it's rich in Vit D)

When I saw the rheumy about a month ago I managed to get him to test me for Vit D but this was all my suggestion because of what I've read in here.

I got a copy of the letter he's sent to my GP today. It says my Vitamin D is a bit low and that a calcium/vit D supplement would be an idea.
I haven't a clue what the lab range is and I think, from what I've googled it's not very low. He has written it merely as 38. I think it's meant to be 50 or over but I could have that wrong. I do wonder how low it would be if I didn't take fish oil, hadn't spent longer than I like to in the sun recently (because of work) and if I hadn't been taking my own supplements.

Thank you for everyojne who's written about it and yes folks - be your own advocate - because it seems to be the only way!!!!!

Take care - Scottie 

[lesmom]

WOW! Way to research, Scottie!
Isn't it horrible how easily things/ we can be dismissed. I wonder if its the same for the doctors if they become ill and have to see a specialist? Do they just take them for their word, or do they let themselves think that maybe some of it is just in their heads? I bet not- I bet they get the royal treatment. Pretty sad that we have to do all the leg work for the specialists. There are some out there though that do have a clue, we just have to pray and be lucky that we find them.


Hopefully you'll be feeling better soon. I am writting a lot of this down to take with me to my 1st rheumy appt. If they're going to draw all of that blood, they might as well test everything possible!

Hugs,
Leslie

[Patze]

Ah, Scottie, what is with some of these turkey's?  Dang.

38 is a bit on the low side with 50 being right in the middle (according to the scale the local lab uses).  But from what I understand, some doctors are now talking about making sure that Vitamin D level is above average.  I sure hope so!  I too think that some of the pain, memory issues, and steadiness issues (among others) just might be due to our vitamins (for what ever reason) not being in the proper ranges, but I could have it all wrong (wouldn't be the first time! ).

Hang in there Scottie, and don't let them gaff you off - give them what for lady and make us proud!   Please keep an eye on it, and if it doesn't rise to at least half way, go back and see if he'll prescribe a larger dosage.  I too used OTC Vitamin D for the first few months, and my level went even lower.  I was finally put on 50,000 unit pills and it soon went up to 50, and it's been a struggle to get it to average ever since.  I'm wondering if I do have absorption issues?

Take care -

Patze

[Linda196]

When you compare Vitamin D levels, please be sure to compare the same test, and the same measurements, because it can be very misleading to get them mixed up.

One test is called 1.25 dihydroxy-vitaminD, and can be reported in picograms/ml with a normal range of 16 to 65 pg/ml, or in picomols/L with a range of 40 to 160 pmol/L. This is the most appropriate test to determine levels if there is no kidney problem, or elevation of blood calcium levels for some reason.

The other test is called 25 hydroxy-vitaminD and and be reported as nanograms/ml with a normal range of 8 to 80 ng/ml, or in nanomols/L with a normal range of 20-200 nmol/L

A result of "38" is normal in all of these ranges except the 1.25 dihydroxy-vitD in pmol/L, but current theories are leaning toward optimal high normal or higher ranges than in the past.

[Scottietottie]

Hi Linda 

All I can say is I hope my GP can make some sense of the letter from the rheumy. There is no blood test result attached and no idication of what test was done and no measurement of what the '38' stands for.
He's just told her to prescribe a Vit D and calcium supplement.  I see her on Wednesday for a medication review - so I'll ask her then in case there is anything more detailed on her computer.

Take care - Scottie 

[lynnmarie219]

Good Job Scottie! I'm glad that they finally listened at your insistence!

Geeeeeeeeezzzz...we shouldn't have to do that but like you said...we have to be our own advocates!

Also...thanks Linda for the Vitamin D lab results explanation...that is helpful!

[lurkernomore]

I am just now finding this thread and it is a really good one. I had my Vitamin D checked for the first time at my last doctor's visit and he said it was low...it was 4! I am guessing that must be low too. I started out taking 1.25 mgs. every day for one week and then just taking it once a week. Does this sound reasonable to anyone here? I am really thinking I may need to change my GP anyway, as he seems to have gotten extremely nonchalant about things and acting as if I am a nut for wanting him to test anything.

I would like my cortisol levels checked, as well as my vitamin B levels. He told my my cortisol levels should be fine, as I am not overweight. Hah! I do not know what to think of that one. And would it really hurt to test my vitamin B levels? Do these docs get paid by insurance not to do tests? I just have questions and I think I deserve some answers. Or...am I just being a difficult patient?

[Billydude]

It makes you wonder what else they may be missing.    Its my own "gut" feeling that everything is not completely figured out about my own ailments.    Heck,  I'm the one that had to suggest to my GP in the first place to consider Sjogrens.

[Lesleybird]

What is the big deal about vit D? It isn't like some kind of miracle cure for Sjogrens. If it is a little low then replace it.   Lesley

[Redetha1]

Replacing Vitamen D is not as easy as it seems according to my Rheumy.  I do not know what test they used for me but my number was 11.  Dr. D. told me the level should be 30 to 100.  Getting your numbers up and keeping them up is the big issue.  Taking over the counter Vitamen D does not always work.  This is why the RX for Vitamen D is given.  In order the have the Vitamen D we need to function well we should be outside (without sunscreen) for approximately 15 minutes per day  (with as much skin exposed as possible).  All this info come from my doctor.  My skin has been so much better since I have been on the Vitamen D...I am on it for 4 months...Will go back to doctor in two weeks.   Hope this helps someone. 

[Poochie]

Glad to hear you finally got results from your doctors.  I hope your replacement therapy goes well. 

I've been on 50,000 units every 2 weeks now for about 5 months.  I started out at below 10 and now am up to 15.  I started out taking it daily for 2 weeks, then once a week for a month, then every 2 weeks.  I have to say I do feel less fatigued but it sure hasn't impressed "Fred" any.

Take care and don't forget to take a calcium citrate tablet with it.  The calcium helps the body absorb the vitamin D.  I take one that also has Vit. D in it.  Every little bit helps.

Take care dear friend, and I hope your levels increase sooner than later,

Hugs, Pooh

[genko_b]

I am also taking vitamin D with my calcium/magnesium supplement, at higher levels than before, per my rheumy. I do think it has helped some with the fatigue, if nothing else.

Genko

[Dolly Dimples]

  Well done Scottie !!   
     I can just imagine you breezing into that hospital, and slapping the Moisture Seekers on his desk!  saying  "here read this and then get back to me"
        Pure genius!  We can all learn a lesson from this.   Sincerely hope the treatment goes well.
                                   Dolly x

[olivia15]

Scottie, does SS cause low Vit D levels? I just found out about 1 month ago that I'm Vit D deficit. My level was 6 when the range is supposed to be from 20-100. My rheumy has me take the 1.25 mg softgel vit d tabs once a week and I'm trying to drink a lot more orange juice with Vit D and calcium since I hate drinking milk.

I had thought that being Vit D deficit was totally separate from SS until reading your post. Thanks for sharing 

[Scottietottie]

Hi Olivia 

I don't think SjS causes Vit D to be low but it does seem to occur along with some AI diseases. I don't think low Vit D causes SjS either. I wanted to know about Vit D because I know it can be implicated in peripheral neuropathy and I wanted to know whether it, or SjS, was causing mine. I still don't have an answer.

Take care - Scottie