# Vitamin D deficiency and Hashimoto's -- what to do?



## mom9495

I just got back my Vitamin D test results and am more confused than ever:

25 OH Vitamin D: 11.0, range 30.0-100.0 ng/ml (Flagged L)

I've read where Vitamin D deficiency is correlated in auto-immune disorders and associated with increased disease activity. Then, I read the link Andros posted, that treating Vitamin D deficiency actually worsened Auto-immune disease.

Since my number is so low, I'm pretty sure my Endo is going to want to give me massive Vitamin D over the next couple of months to raise my level.

Combine that with the fact that I've been dx'd with Hashimotos, Sicca Syndrome and Raynauld's, and still undergoing tests for lupus, what am I supposed to do???

Anyone out there also have auto-immune diseases and Vitamin D deficiency? If so, did increasing your Vitamin D increase or decrease your symptoms????


----------



## Lovlkn

mom9495 said:


> I just got back my Vitamin D test results and am more confused than ever:
> 
> 25 OH Vitamin D: 11.0, range 30.0-100.0 ng/ml (Flagged L)
> 
> I've read where Vitamin D deficiency is correlated in auto-immune disorders and associated with increased disease activity. Then, I read the link Andros posted, that treating Vitamin D deficiency actually worsened Auto-immune disease.
> 
> Since my number is so low, I'm pretty sure my Endo is going to want to give me massive Vitamin D over the next couple of months to raise my level.
> 
> Combine that with the fact that I've been dx'd with Hashimotos, Sicca Syndrome and Raynauld's, and still undergoing tests for lupus, what am I supposed to do???
> 
> Anyone out there also have auto-immune diseases and Vitamin D deficiency? If so, did increasing your Vitamin D increase or decrease your symptoms????


I tested low as well last May and it was 26. After 12 weeks on 50K IU it raised to 51 (32-100).

I have to be honest and say that at the end of the 12 weeks I felt absolutely fantastic and noticed a huge improvement on my energy and overall feeling to the positive side. My doc told me to continue on 1K IU a day going forward and about 6-8 weeks later I was feeling a decline in my energy and moods so I increased my level to 2k-3k iu daily to maintain the energy and mood levels. I have not re-tested since.

I live in the South East and am in the sun all the time and was amazed to find out I was low on Vit D. I also take a multi and calcium with Vit D.


----------



## Andros

mom9495 said:


> I just got back my Vitamin D test results and am more confused than ever:
> 
> 25 OH Vitamin D: 11.0, range 30.0-100.0 ng/ml (Flagged L)
> 
> I've read where Vitamin D deficiency is correlated in auto-immune disorders and associated with increased disease activity. Then, I read the link Andros posted, that treating Vitamin D deficiency actually worsened Auto-immune disease.
> 
> Since my number is so low, I'm pretty sure my Endo is going to want to give me massive Vitamin D over the next couple of months to raise my level.
> 
> Combine that with the fact that I've been dx'd with Hashimotos, Sicca Syndrome and Raynauld's, and still undergoing tests for lupus, what am I supposed to do???
> 
> Anyone out there also have auto-immune diseases and Vitamin D deficiency? If so, did increasing your Vitamin D increase or decrease your symptoms????


As you read in the article, the body automatically down regulates Vitamin D when there is an autoimmune process.

The best thing to do is to confer with your doctor, do more research and do what "you" think is the best thing to do for "you.!" Bottom line..............always!


----------



## Mariposa

As a long time Vitamin D sufferer, I would have to say once starting on large Rx doses of Vitamin D, my symptoms did get a bit worse, I felt very light headed, dizzy, sick to my stomach, and had a feeling of being high. My bones did hurt more. But after awhile the symptoms went away and boy did I start to feel better. I have had Vitamin D treatment several times and had the same thing happen to me each time. Hope this helps.


----------



## mom9495

I am hoping that the Vitamin D increase will help my symptoms, too. Especially the fatigue -- it's just so overwhelming to be so overwhelmed all the time.

Endo put me on 50,000 IUs 2x week for 8 weeks, then 1x week ongoing. Keeping my fingers crossed for it to work.


----------



## Andros

mom9495 said:


> I am hoping that the Vitamin D increase will help my symptoms, too. Especially the fatigue -- it's just so overwhelming to be so overwhelmed all the time.
> 
> Endo put me on 50,000 IUs 2x week for 8 weeks, then 1x week ongoing. Keeping my fingers crossed for it to work.


Let us know how you feel; I "am" interested in this. And I hope and pray that you do feel better. Keeping my fingers crossed also!


----------



## mom9495

Andros said:


> Let us know how you feel; I "am" interested in this. And I hope and pray that you do feel better. Keeping my fingers crossed also!


Thank you, Andros. You have been such a big help to me here! :hugs:
I will definitely keep you posted.


----------



## daisy_ysiad2002

Well we NEED Vit D to function right...and it is a natural part that our body needs that we get from the sun. I don't see the point in being staying deficient in Vit D and causing more problems. Yes with hashi's it may make things worse but you have to pick the lesser of 2 evils I suppose. Vit D is needed in your body and the hashi's will just have to deal with that fact. You can't start 'd' listing *no pun intended* all the vitamins your body needs to function just because 'hashi's doesn't like it. Thats my thought anyways. I hope it helps. Everything in moderation. Hugs.


----------



## CA-Lynn

I live in southern CA and spend a lot of time outdoors. It was an enormous surprise to me to find my Vitamin D level had tanked. I have had hypothyroidism for 20 years, followed by close to as many years of other autoimmune diseases. All had been managed very well until suddenly I became extremely lethargic and bones were killing me. And suddenly my TSH went out of control and I flip-flopped from Hypo- to Hyperthyroidism.

What restored balance was 50,000 IU of Vitamin D2 [by Rx, not OTC] taken weekly at first [for a few months], and now every 2 weeks. My level, measured last month is up to 40 - takes a while for it to climb back up. Nonetheless, the lethargy disappeared, as did the bone and muscle pain. Since I also have several forms of autoimmune arthritis, I can tell the difference between Vitamin D deficiency and arthritic flares.

I definitely have not seen any exacerbation in my autoimmune diseases since I've started Vitamin D2 [about 4 months ago]. If anything, I've seen improvement.


----------



## Andros

CA-Lynn said:


> I live in southern CA and spend a lot of time outdoors. It was an enormous surprise to me to find my Vitamin D level had tanked. I have had hypothyroidism for 20 years, followed by close to as many years of other autoimmune diseases. All had been managed very well until suddenly I became extremely lethargic and bones were killing me. And suddenly my TSH went out of control and I flip-flopped from Hypo- to Hyperthyroidism.
> 
> What restored balance was 50,000 IU of Vitamin D2 [by Rx, not OTC] taken weekly at first [for a few months], and now every 2 weeks. My level, measured last month is up to 40 - takes a while for it to climb back up. Nonetheless, the lethargy disappeared, as did the bone and muscle pain. Since I also have several forms of autoimmune arthritis, I can tell the difference between Vitamin D deficiency and arthritic flares.
> 
> I definitely have not seen any exacerbation in my autoimmune diseases since I've started Vitamin D2 [about 4 months ago]. If anything, I've seen improvement.


I am very relieved to know that you are responding favorably to Vitamin D therapy.

It's a fact of life; we do need Vitamin D.


----------



## mom9495

OK -- so today I took my 3rd 50,000 IU Vitamin D pill. The only difference I can tell so far, is I've had a pounding headache everyday since I started taking it, and have a nasty metallic taste in my mouth. I don't know that I can blame it completely on the Vitamin D (the endo also increased my levothyroxine to 75 mcgs, so that might be the culprit, too.)

I know others have said that when starting a new pill, it sometimes gets worse before it gets better.

I'm sure hoping they're right!


----------



## Andros

mom9495 said:


> OK -- so today I took my 3rd 50,000 IU Vitamin D pill. The only difference I can tell so far, is I've had a pounding headache everyday since I started taking it, and have a nasty metallic taste in my mouth. I don't know that I can blame it completely on the Vitamin D (the endo also increased my levothyroxine to 75 mcgs, so that might be the culprit, too.)
> 
> I know others have said that when starting a new pill, it sometimes gets worse before it gets better.
> 
> I'm sure hoping they're right!


It is true; being a good scientist requires making only one change at a time to see what the outcome might be.

Please call your doctor. Pounding headaches are no good.

Let us know how you are doing. I am worried.


----------



## mom9495

Andros said:


> It is true; being a good scientist requires making only one change at a time to see what the outcome might be.
> 
> Please call your doctor. Pounding headaches are no good.
> 
> Let us know how you are doing. I am worried.


I actually have an appointment with my Rheumy this afternoon -- even though she didn't prescribe the Vitamin D for me, she and my endo are keeping track of my health together. I have it on my list to mention.

I'll let you know what she says.


----------



## Andros

mom9495 said:


> I actually have an appointment with my Rheumy this afternoon -- even though she didn't prescribe the Vitamin D for me, she and my endo are keeping track of my health together. I have it on my list to mention.
> 
> I'll let you know what she says.


And I will be most interested. In the meantime; I hope and pray you feel better. This is the pits!


----------



## Lovlkn

I've had wicked headaches on and off since February - are you sure it's not hayfever?


----------



## mom9495

Lovlkn said:


> I've had wicked headaches on and off since February - are you sure it's not hayfever?


I don't think so. I've never had any allergies/spring hayfever at all. And the headaches definitely coincide with increase of levo and adding large dose Vit D. Anything's possible. I've learned that the body I *used* to know has changed very quickly.

Well, I've learned an important lesson. Doctors don't want to cross-diagnose/treat you/answer your questions about another doctor's suggestions. My Rheumy told me to contact my Endo about the headaches/metallic taste, since he ordered the new meds. Good news is, no headache today. If it comes back tomorrow (another dose of Vit D due) then I will call the Endo. It seems all I ever do is call the doctors, email the doctors, visit the doctors or curse the doctors (lol). Mostly the latter! 

Rheumy seems fine with waiting to see if increased levo and Vit D help with my fatigue, although she has ordered a lip biopsy to see to if Plaquenil will help, too (I tested positive for several other auto-immune diseases, too).

And oh joy -- added 3 new meds to my already-growing list. How will I ever know what's causing any side effects now???

Grrrr....this whole experience is so frustrating! Thank God for you guys.


----------



## CA-Lynn

Unless the medications are for something immediately life-threatening I would get the doctor's concurrence to begin one of the meds; then after a week or 10 days, start the next one; then after a week or ten days start the third med. This way you'll have a better shot at identifying the causal factor if you DO have a reaction.


----------



## mom9495

CA-Lynn said:


> Unless the medications are for something immediately life-threatening I would get the doctor's concurrence to begin one of the meds; then after a week or 10 days, start the next one; then after a week or ten days start the third med. This way you'll have a better shot at identifying the causal factor if you DO have a reaction.


That's a good idea, CA Lynn. I doubt seriously that I will have a reaction to baby aspirin, so I think I will start that today, along with the calcium channel blocker. Then the next one. I'll add them in order of importance. That way, I'll have the best outcome with the least confusion should more side effects occur.


----------



## CA-Lynn

Play it safe and call your doctor's office and leave a message of how you intend to start the drugs.

Sometimes doctors prescribe drugs in tandem - one of them helps the other or wards off side effects, or has some purpose......so that's why it's important to get clearance first from your doctor.

For example: my body is very sensitive to drugs. i also take a number of them daily [11 each day]. The greater the number of drugs, the greater the likelihood on interaction and therefore side effects. So that's why when a doctor prescribes a new drug for me I ask if it's ok if I start with [e.g.] one pill per day instead of 3, then work up to the full dose.

I can't stress enough how important the doctor's concurrence is.


----------



## Andros

mom9495 said:


> That's a good idea, CA Lynn. I doubt seriously that I will have a reaction to baby aspirin, so I think I will start that today, along with the calcium channel blocker. Then the next one. I'll add them in order of importance. That way, I'll have the best outcome with the least confusion should more side effects occur.


Have you been tested for Lupus? Antiphospholipid Syndrome is often co-occuring to Lupus and so is Sjogren's.

I hate to see you on so many meds. It saddens me.


----------



## mom9495

Andros said:


> Have you been tested for Lupus? Antiphospholipid Syndrome is often co-occuring to Lupus and so is Sjogren's.
> 
> I hate to see you on so many meds. It saddens me.


Yes -- I was tested for Lupus. All blood tests were negative, even though I have all of the symptoms -- without at least one abnormal blood test, I don't fit 4 of the 11 criteria. I think my rheumy has ruled it out. She's not one to give an official diagnosis without some kind of laboratory proof. I may be one of those 10% who has Lupus and never have abnormal blood tests, but for now, she's not treating me for it. Besides, all these other "lovely" auto-immune diseases keep popping up their ugly heads, which lead my doc to attribute my symptoms (many are cross-overs) to one of the 4 autoimmunes I already have confirmed. I'm a mess. I don't think I'm going to be chosen for anyone's clinical experiment anytime soon, lol.

I'm sure I'm like most everyone here. I don't care WHAT it is, as long as they can treat it, slow it down or smother the symptoms.

And I hate all the meds, too. I am not very good at remembering to take them(not to mention the cost is ridiculous, even with insurance), but I'm trying.

CA-Lynn -- I did get the go-ahead to start my meds a couple weeks apart. So, now I'm slowly adding them into my regimine. Thanks for the suggestion!


----------



## Andros

mom9495 said:


> Yes -- I was tested for Lupus. All blood tests were negative, even though I have all of the symptoms -- without at least one abnormal blood test, I don't fit 4 of the 11 criteria. I think my rheumy has ruled it out. She's not one to give an official diagnosis without some kind of laboratory proof. I may be one of those 10% who has Lupus and never have abnormal blood tests, but for now, she's not treating me for it. Besides, all these other "lovely" auto-immune diseases keep popping up their ugly heads, which lead my doc to attribute my symptoms (many are cross-overs) to one of the 4 autoimmunes I already have confirmed. I'm a mess. I don't think I'm going to be chosen for anyone's clinical experiment anytime soon, lol.
> 
> I'm sure I'm like most everyone here. I don't care WHAT it is, as long as they can treat it, slow it down or smother the symptoms.
> 
> And I hate all the meds, too. I am not very good at remembering to take them(not to mention the cost is ridiculous, even with insurance), but I'm trying.
> 
> CA-Lynn -- I did get the go-ahead to start my meds a couple weeks apart. So, now I'm slowly adding them into my regimine. Thanks for the suggestion!


What labs did you have for Lupus? Did you have Anti-DNA, C3 and C4? Those are conclusive. You could not have any ANA and still have the above.


----------



## mom9495

Andros said:


> What labs did you have for Lupus? Did you have Anti-DNA, C3 and C4? Those are conclusive. You could not have any ANA and still have the above.


No Anti-DNA Test given. ANA was negative.
C3- 142 (90-180 range)
C4 - 22 (10-40 range)
Sed Rate - 20 (0-20)

So, I guess I don't have it, right?


----------



## CA-Lynn

mom9495 said:


> No Anti-DNA Test given. ANA was negative.
> C3- 142 (90-180 range)
> C4 - 22 (10-40 range)
> Sed Rate - 20 (0-20)
> 
> So, I guess I don't have it, right?


I can't comment on whether you have lupus or not, but I do have a few comments:

1. My Sed Rate is checked at least once every 3 months.....for the past 20 years. Never once has it been out of the normal range. [Incidentally, if you're over age 50 then 0-30 is the normal range.]

2. There are such things as false positives and false negatives ["seronegative"].

3. In the early stages of some autoimmune diseases, antibodies can be undetectable.

4. There are hundreds of rheumatological diseases. Many of them have similar symptoms.


----------



## Andros

mom9495 said:


> No Anti-DNA Test given. ANA was negative.
> C3- 142 (90-180 range)
> C4 - 22 (10-40 range)
> Sed Rate - 20 (0-20)
> 
> So, I guess I don't have it, right?


Not with that C3 and C4.

This is the C3; you can look up the C4 by putting in the search engine..

http://www.labtestsonline.org/understanding/analytes/complement_levels/test.html

I would like to know why your doctor did not order Anti-DNA when you have evidence of C3 and C4???

So, C3 and C4 are not definitive of Lupus but their presence most certainly should suggest to the doctor he/ she should run Anti-DNA.

Increased and decreased complement levels will not tell your doctor what is wrong, but they will give him an indication that the immune system is involved with your condition. Complement levels can be increased with inflammation, rising before other markers such as the erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP).

ANA (antinuclear antibodies) "if" present are only "suggestive" anyway; just like the C3 and C4.

Let me know if you decide to pursue this.


----------



## mom9495

I researched C3 and C4 online (thanks for the link). But, I'm a little confused.

So you agree, it looks like I don't have Lupus via my C3 and C4 results, yet, because I have "evidence" of C3 and C4, the doc should have ordered a Anti-DNA test?

You also mention "their presence" -- should a healthy person not have *any* C3/C4? Mine certainly seem to fall within "normal ranges". So, their not low, not high, but they are there. Does that have any significance?

I'm sorry -- I think my brain fog is really bad today.


Andros said:


> *Not with that C3 and C4*.
> 
> This is the C3; you can look up the C4 by putting in the search engine..
> 
> http://www.labtestsonline.org/understanding/analytes/complement_levels/test.html
> 
> I would like to know why your doctor did not order Anti-DNA when you have evidence of C3 and C4???
> 
> So, C3 and C4 are not definitive of Lupus but their presence most certainly should suggest to the doctor he/ she should run Anti-DNA.
> 
> Increased and decreased complement levels will not tell your doctor what is wrong, but they will give him an indication that the immune system is involved with your condition. Complement levels can be increased with inflammation, rising before other markers such as the erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP).
> 
> ANA (antinuclear antibodies) "if" present are only "suggestive" anyway; just like the C3 and C4.
> 
> Let me know if you decide to pursue this.


----------



## Andros

mom9495 said:


> I researched C3 and C4 online (thanks for the link). But, I'm a little confused.
> 
> So you agree, it looks like I don't have Lupus via my C3 and C4 results, yet, because I have "evidence" of C3 and C4, the doc should have ordered a Anti-DNA test?
> 
> You also mention "their presence" -- should a healthy person not have *any* C3/C4? Mine certainly seem to fall within "normal ranges". So, their not low, not high, but they are there. Does that have any significance?
> 
> I'm sorry -- I think my brain fog is really bad today.


Don't be sorry; this is a complicated area. I don't understand most of it.

But, here is what I know...

The Complements are proteins that are part of the Complement system (1 through 9) and they are used to monitor the activity of diseases such as systemic lupus. That to me means that the lower in range, the better. My rheumatologist/immunologist is always pleased when they are barely detectable.

When immune complexes form, complement helps to clear them from the blood, making levels of complement low.

And, I can only say that my instincts tell me you should have the Anti-DNA run.


----------



## CA-Lynn

I think it's always a good thing to run as many related tests at the same time that you can. Running a couple today and then a couple different tests two months from now might not present a clear picture, whereas running them all at once presents a lot more information and usually a lot more evidence that can rule out certain diseases.

Of course, tests are often expensive and too often certain insurance plans don't allow for running a bunch of tests without certain presenting symptoms.


----------



## Andros

CA-Lynn said:


> I think it's always a good thing to run as many related tests at the same time that you can. Running a couple today and then a couple different tests two months from now might not present a clear picture, whereas running them all at once presents a lot more information and usually a lot more evidence that can rule out certain diseases.
> 
> Of course, tests are often expensive and too often certain insurance plans don't allow for running a bunch of tests without certain presenting symptoms.


I _certainly_ agree with that. This way, you can look at the whole picture.


----------



## mom9495

That definitely makes sense. I'm not due for more lab testing for a few weeks (to check my thyroid levels and Vit D levels). If my symptoms continue, I think I'll ask for the anti-dna and TSI tests to be added. Thanks ladies!


----------



## Andros

mom9495 said:


> That definitely makes sense. I'm not due for more lab testing for a few weeks (to check my thyroid levels and Vit D levels). If my symptoms continue, I think I'll ask for the anti-dna and TSI tests to be added. Thanks ladies!


That sounds like a very good plan to me! A few weeks really won't matter a whole lot if you are feeling okay.


----------

