Update---I went to the doctor

[Scarlett]

I have not been feeling great.  I am exhausted constantly.  I yawn all day long.  I can fall asleep at my desk literally.  And my brain feels foggy and disjointed. And my joints all over hurt.  Like my toes.  My hips, my shoulders, elbows, hands.  Ankles. 

So three things.....First, the exhaustion is how I feel when my VIT D is low.  So I have been taking 4000 units per day since my check up in Jan showed my level at 25.  

Second, is my joints.  I have been tested for rheumatoid arthritis twice---both negative.  But apparently it can be negative for years before suddenly going positive.....so he is testing me again for that.  

And third, he is sending me to a sleep study. Which I am not thrilled about, but dh suggested it first and doc agrees.  

So I just got my Vit D results.  64.  I don't think that is too high, but obviously not the source of my exhaustion.  I haven't heard from doc yet.....I think he will wait until all results are in.

But I am probably going to be referred to a rheumatologist.  

See my thoughts are so disjointed I can't even remember why I started this post.  I think to say that I am shocked my Vit D level is at 64/

 

Edited October 8, 2021 by Scarlett

[Pawz4me]

5 minutes ago, Scarlett said:

 

Second, is my joints.  I have been tested for rheumatoid arthritis twice---both negative.  But apparently it can be negative for years before suddenly going positive.....so he is testing me again for that.  

 

 

Yes. I was first tested about ten years before I was positive.

And you can have seronegative RA. You do NOT have to have an elevated rheumatoid factor or anti-CCP to be diagnosed.

It would probably be a great idea to see a rheumy. The joint stuff, brain fog and exhaustion all scream something autoimmune. 

[ktgrok]

7 minutes ago, Pawz4me said:

Yes. I was first tested about ten years before I was positive.

And you can have seronegative RA. You do NOT have to have an elevated rheumatoid factor or anti-CCP to be diagnosed.

It would probably be a great idea to see a rheumy. The joint stuff, brain fog and exhaustion all scream something autoimmune. 

Yup. and I'll add my standard "get checked for Celiac" spiel. 

And lyme and other tick borne diseases. 

[Soror]

Have they tested your thyroid?

B12 levels? 

[Clemsondana]

One thing that happened when I got my allergies under control is that I had more energy and most of my joint pain went away.  I'm not saying that you have allergies - I know that joint pain is definitely an atypical presentation - just pointing out that there are all sorts of things that can cause inflammation that we don't consider. I hope you get it figured out soon!

Edited October 8, 2021 by Clemsondana

[Scarlett]

55 minutes ago, ktgrok said:

Yup. and I'll add my standard "get checked for Celiac" spiel. 

And lyme and other tick borne diseases. 

He is checking me for a tick borne disease....not lyme though...It is the one that makes you allergic to meat.  He says he is seeing more and more of it.

[Scarlett]

14 minutes ago, Clemsondana said:

One thing that happened when I got my allergies under control is that I had more energy and most of my joint pain went away.  I'm not saying that you have allergies - I know that joint pain is definitely an atypical presentation - just pointing out that there are all sorts of things that can cause inflammation that we don't consider. I hope you get it figured out soon!

Hi, Are you talking about food allergies or environmental?  I was checked out this summer by an allergist and apparently I am allergic to nothing.  But it wasn't for food.....I don't seem to have any food allergies at all. I do have chronic post nasal drip which can turn into sinus infection...but the ear nose and throat doctor has helped me find the right combo to keep it at bay.  I only do nose spray and one zyrtec per day.  It has worked amazing so far.  

[Scarlett]

29 minutes ago, Soror said:

Have they tested your thyroid?

B12 levels? 

Thyroid Yes,multiple times.  My blood work in January for my regular check showed everything perfect except low Vit D. Of course there is a lot that is not included in a regular check up.

And this time he is checking my B12 levels.  

[prairiewindmomma]

About 25-30% of people with rheumatoid arthritis are seronegative. 
 

There are many, many good studies that show that early intervention with a disease-modifying drug really helps. Many large cities actually run “early disease” treatment protocols. That said, most general doctors know little about seronegative RA and even some rheumatologists don’t do early RA intervention but offer a wait and see approach. 

If you get a diagnosis, know about this: 
https://academic.oup.com/rheumatology/article/40/11/1211/1783951#26988202

It’s a bit technical, but it talks about how important early intervention is because damage without treatment occurs early and is cumulative.

 

[kbutton]

20 minutes ago, prairiewindmomma said:

About 25-30% of people with rheumatoid arthritis are seronegative. 

There are many, many good studies that show that early intervention with a disease-modifying drug really helps. Many large cities actually run “early disease” treatment protocols. That said, most general doctors know little about seronegative RA and even some rheumatologists don’t do early RA intervention but offer a wait and see approach. 

If you get a diagnosis, know about this: 
https://academic.oup.com/rheumatology/article/40/11/1211/1783951#26988202

It’s a bit technical, but it talks about how important early intervention is because damage without treatment occurs early and is cumulative.

I have a relative that had seronegative RA, and her rheumatologist did early aggressive treatment, which put it in what seems to be permanent remission. 25 years later, and OA is a problem, and she wonders if she really did have RA (she did; I remember her misery quite well for her, lol). There is a family history of RA, and not everyone who has it has been that fortunate. I hope if you have it, you can get started on treatment right away.

[Clemsondana]

1 hour ago, Scarlett said:

Hi, Are you talking about food allergies or environmental?  I was checked out this summer by an allergist and apparently I am allergic to nothing.  But it wasn't for food.....I don't seem to have any food allergies at all. I do have chronic post nasal drip which can turn into sinus infection...but the ear nose and throat doctor has helped me find the right combo to keep it at bay.  I only do nose spray and one zyrtec per day.  It has worked amazing so far.  

Mine was environmental, to lots of things.  I actually asked the doctor if benedryl could cover up any truly bad conditions because so many things disappeared when I took it (these days I rarely take it - I did shots for years and some months don't even need an OTC).  But, I was just throwing out the idea that, while arthritis is the obvious first guess, it could be something else.  I experienced around 5 days of joint pain after my last tetanus shot and 2 months of joint pain after the covid shot (knowing my experience with tetanus, we went with the 1-dose shot...).   I don't know what other sorts of generalized inflammatory things are out there.  I also play around with some dietary things that are supposed to help inflammation - munching on dried cherries, etc, and I'm thinking about cutting way back on sugar for assorted reasons including inflammatory ones.  My family is full of autoimmune stuff - environmental allergies (although fairly few food ones), arthritis, one cousin with RA - and I think of it as different manifestations of the same overactive immune system.  We rarely get sick, although many shots give noticeable symptoms (arms that swell for a week, being sick for days, etc).  

[ktgrok]

1 hour ago, prairiewindmomma said:

About 25-30% of people with rheumatoid arthritis are seronegative. 
 

There are many, many good studies that show that early intervention with a disease-modifying drug really helps. Many large cities actually run “early disease” treatment protocols. That said, most general doctors know little about seronegative RA and even some rheumatologists don’t do early RA intervention but offer a wait and see approach. 

If you get a diagnosis, know about this: 
https://academic.oup.com/rheumatology/article/40/11/1211/1783951#26988202

It’s a bit technical, but it talks about how important early intervention is because damage without treatment occurs early and is cumulative.

 

Yup. My mom's whatever type of arthritis she has was misdiagnosed for years, and now she has hands that really should just not function at all. Even the doctors are amazed she has any use of them. Looking at her xrays, my first thought is "dear Lord, amputate and give her artificial hands!". 

 

[Clemsondana]

My SIL has psoriatic arthritis.  It took years for her to get a diagnosis.  My family doesn't have that one so I didn't know much about it before she was diagnosed.  

[Scarlett]

Holy Cow----Help me read this

 

Component	Your Value	Standard Range	Flag
EBV Early AG AB	<5.0 U/mL	0.0 - 8.9 U/mL
EBV Early Antigen Interpretation	Negative	Negative
EBV Ab, to VCA IgG	19.6 U/mL	0.0 - 17.9 U/mL	H
EBV VCA IgG Interp	Equivocal	Negative	A
EBV Ab to VCA IgM	<10.0 U/mL	0.0 - 35.9 U/mL
EBV VCA IgM Interp	Negative	Negative
EBV Nuclear IgG	248.0 U/mL	0.0 - 17.9 U/mL	H
EBV Nuclear IgG Interp	Positive	Negative	A

[Scarlett]

Ok, pretty sure it just means I have had a past infection but not really sure. 

[prairiewindmomma]

https://labtestsonline.org/tests/epstein-barr-virus-ebv-antibody-tests

[Scarlett]

6 hours ago, prairiewindmomma said:

https://labtestsonline.org/tests/epstein-barr-virus-ebv-antibody-tests

Thank you. I am pretty sure it means I have had the virus in the last. 

Of all the tests he did, this is the only t came back with a ‘flag’ warning.  

[Scarlett]

My doc sent me a message on my portal tonight……nothing to indicate autoimmune……all labs not in yet in but nothing concerning.  EBV panel just indicates a past infection…..but my Vit b12 is low……he told me to take supplements or he will do injections if I prefer.  Which I think I do. ,more trouble…but I need to feel better.

[busymama7]

19 minutes ago, Scarlett said:

My doc sent me a message on my portal tonight……nothing to indicate autoimmune……all labs not in yet in but nothing concerning.  EBV panel just indicates a past infection…..but my Vit b12 is low……he told me to take supplements or he will do injections if I prefer.  Which I think I do. ,more trouble…but I need to feel better.

There is a generic mutation similar to MTHFR but on a different gene that causes you not to be able to get B12 from your food (or not well).  My Dr switched me to methycolabalimin form (I may have spelled that wrong) and my number quadrupled in 6 weeks. I had been taking a b complex for six years and hadn't gotten to a good B12 number during that time. The mutation was new information for my Dr and he told me just to try the drops and see what happened. It was obvious quickly that it worked and then we confirmed I had the mutation with a genetic test later.   Anyways, taking that form wouldn't hurt even if you don't have the mutation so I would start there personally. I would see what the injection is but I would guess it is synthetic. It will probably work temporarily but not in the long run (that was my mom's experience with the injections)

 

Edited October 10, 2021 by busymama7

[busymama7]

I think that if you are low on B12 and not vegan that there has to be something going on. Which is why the mutation made so much sense.   B12 is responsible for so many systems in the body that having adequate levels is crucial.   I think the addition of synthetic vitamins into medical practice is such a mistake.  Using a bio available form is so much better when you have low levels.  

[Jaybee]

12 hours ago, busymama7 said:

There is a generic mutation similar to MTHFR but on a different gene that causes you not to be able to get B12 from your food (or not well).  My Dr switched me to methycolabalimin form (I may have spelled that wrong) and my number quadrupled in 6 weeks. I had been taking a b complex for six years and hadn't gotten to a good B12 number during that time. The mutation was new information for my Dr and he told me just to try the drops and see what happened. It was obvious quickly that it worked and then we confirmed I had the mutation with a genetic test later.   Anyways, taking that form wouldn't hurt even if you don't have the mutation so I would start there personally. I would see what the injection is but I would guess it is synthetic. It will probably work temporarily but not in the long run (that was my mom's experience with the injections)

 

Can you buy these drops OTC? If so, where and what brand do you use?

[busymama7]

12 minutes ago, Jaybee said:

Can you buy these drops OTC? If so, where and what brand do you use?

This is what I use.  It is pricey but has been so incredibly helpful. I have my kids on it now too. We have thyroid and hormones issues like PCOS and our Dr is hopeful that correction the B12 issue will help those things.  

 

https://nutrascriptives.com/products/methylcobalamin-b-12-spray

 

[TravelingChris]

On 10/8/2021 at 8:34 AM, Pawz4me said:

Yes. I was first tested about ten years before I was positive.

And you can have seronegative RA. You do NOT have to have an elevated rheumatoid factor or anti-CCP to be diagnosed.

It would probably be a great idea to see a rheumy. The joint stuff, brain fog and exhaustion all scream something autoimmune. 

Yes, and most doctors just test Rheumatoid factor.  I was considered to be seronegative RA until my newest rheumatologist actually tested my anti-CCP and I was positive on that. Still always negative on Rf if anyone tests that.

[prairiewindmomma]

Even crazier, you can test negative for rheumatoid factor several times, test positive once and then go back to testing negative.

I think some things in rheumatology are way more connected IRL than science can yet put together. I’d love to see the Vectra tests used more widely for treatment decisions.

[popmom]

Take this with a grain of salt… regarding the EBV red flag…

See if your doctor will let you do a trial of Acyclovir. I have had much improvement in my CFS/ME symptoms since starting it a couple of years ago. 

[Scarlett]

7 hours ago, popmom said:

Take this with a grain of salt… regarding the EBV red flag…

See if your doctor will let you do a trial of Acyclovir. I have had much improvement in my CFS/ME symptoms since starting it a couple of years ago. 

I am not familiar with that drug or CFS/ME…..can you elaborate.  

[ktgrok]

The injections for B12 are a good idea, as some people loose the ability to absorb it orally. If you have any digestive issues, consider more testing to see if there is a reason you are not absorbing it. B12 defieciency is common in Celiac disease, as is joint pain, fatigue, etc.

[kbutton]

2 hours ago, ktgrok said:

The injections for B12 are a good idea, as some people loose the ability to absorb it orally. If you have any digestive issues, consider more testing to see if there is a reason you are not absorbing it. B12 defieciency is common in Celiac disease, as is joint pain, fatigue, etc.

Pernicious anemia is autoimmune and one reason for the bolded. 

[Scarlett]

My doctor suggested I do some private vitamin and metals testing.  He said he just did a panel on https://allergytest.co/ . He said insurance won't pay for most of these tests and for the cost of a test for one vitamin through a medical lab I could get an entire panel on a site like the one I linked.  

So when I get time I am going to do that.  

[prairiewindmomma]

47 minutes ago, Scarlett said:

My doctor suggested I do some private vitamin and metals testing.  He said he just did a panel on https://allergytest.co/ . He said insurance won't pay for most of these tests and for the cost of a test for one vitamin through a medical lab I could get an entire panel on a site like the one I linked.  

So when I get time I am going to do that.  

FYI---did he run any of the autoimmune panels--c-reactive protein (CRP), ana, or the like? Did he also do thyroid?  I'd honestly spend my money there (where insurance will cover) as a priority over the private testing. I'm not saying you shouldn't do both---but don't let this bunny trail detract you from the bigger issues you need to be dealing with as you're trying to sort this out.

Hope you are feeling better soon!

[Scarlett]

32 minutes ago, prairiewindmomma said:

FYI---did he run any of the autoimmune panels--c-reactive protein (CRP), ana, or the like? Did he also do thyroid?  I'd honestly spend my money there (where insurance will cover) as a priority over the private testing. I'm not saying you shouldn't do both---but don't let this bunny trail detract you from the bigger issues you need to be dealing with as you're trying to sort this out.

Hope you are feeling better soon!

 

 

Edited October 11, 2021 by Scarlett

[ktgrok]

54 minutes ago, prairiewindmomma said:

FYI---did he run any of the autoimmune panels--c-reactive protein (CRP), ana, or the like? Did he also do thyroid?  I'd honestly spend my money there (where insurance will cover) as a priority over the private testing. I'm not saying you shouldn't do both---but don't let this bunny trail detract you from the bigger issues you need to be dealing with as you're trying to sort this out.

Hope you are feeling better soon!

Yup, plus celiac panel. It's easy, and anyone with vitamin deficiencies should have that tested.  (you can get an at home test for celiac that is a finger prick but probably cheaper with insurance)

Edited October 11, 2021 by ktgrok

[popmom]

7 hours ago, Scarlett said:

I am not familiar with that drug or CFS/ME…..can you elaborate.  

I’ll message you

[Scarlett]

Below are the tests he did on me.  I think it looks fairly extensive.  Nothing abnormal except EBV panel which he says does indicate a prior infection--very common.  And lowish Vit B12.  He is going to prescribe injections for that--waiting on the phone call to see what that will entail.  

 

Arthralgia, unspecified joint

Comments:

Labs today. If no answer, consider referral to rheumatology.

Orders:

- Galactose alpha-1,3-galactose IGE

- Antinuclear Antibodies

- Sedimentation Rate, Automated

- C-Reactive Protein

- Rheumatoid Factor

- Cyclic Citrul Peptide Antibody, IgG

 

Hypovitaminosis D

Comments:

Insurance may not cover rechecking early, but you asked to recheck early.

Orders:

- Vitamin D 25 Hydroxy

 

Fatigue, unspecified type

Comments:

Further workup today

Orders:

- Galactose alpha-1,3-galactose IGE

- T3, Free

- T4, Free

- Thyroid Stimulating Hormone

- Thyroid peroxidase antibody

- Anti-Thyroglobulin Antibody

- Antinuclear Antibodies

- Vitamin B12/Folate, Serum Panel

- Methylmalonic Acid, Serum

- EBV Panel

 

Poor sleep

- Ambulatory referral to Sleep Studies (Sleep Medicine); Future

 

Paroxysmal atrial fibrillation (HCC)

- CBC with Auto Differential

- Comprehensive Metabolic Panel

- Lipid panel

 

Hypertriglyceridemia

- CBC with Auto Differential

- Comprehensive Metabolic Panel

- Lipid panel

[klmama]

The injections probably mean giving them to yourself in your thigh.  If that doesn't thrill you, you might try taking sublingual B12 (methyl cobalamin); here's one option.  It says they are chewable, but you can let them dissolve under your tongue.  Supposedly, that helps with faster absorption.  

[ktgrok]

That's a good panel, I'd just want a celiac test as well. Many doctors don't realize that Celiac can present with joint pain and brain fog and fatigue instead of GI issues. The GI doctors know this, but if you don't have GI issues you won't end up there for them to tell you and test you. This is the home test kit, but if you end up going in for the B12 injections I'm sure the doctor would do it and run with insurance. He'd have a reason given the low B12.  https://www.imaware.health/at-home-blood-test/celiac-disease-screening?campaignid=11551207113&adgroupid=111200720383&adid=536634982774&gclid=CjwKCAjwh5qLBhALEiwAioods8Y2kE1Ybq6kUgHBVEU8-ncG_9E7NvpEcTcGnlfVNXV6rDVSjQG98RoCuxkQAvD_BwE

[SoCal_Bear]

For those who aren't aware B12 reference levels vary. The US reference levels are significantly lower than Japan's levels. I was dx with pernicious anemia. I don't absorb B12. About 10 years ago, I couldn't make it through the day without taking a nap. Every day for 90 minutes to 2 hours. I was constantly tired. My PCP tested me for all the common culprits and found my B12 levels were around 35 pg/ml. US considers this treatable at 200 pg/ml. Japan/Europe considers this treatable at levels below 500 pg/ml. 

 

[Scarlett]

8 minutes ago, calbear said:

For those who aren't aware B12 reference levels vary. The US reference levels are significantly lower than Japan's levels. I was dx with pernicious anemia. I don't absorb B12. About 10 years ago, I couldn't make it through the day without taking a nap. Every day for 90 minutes to 2 hours. I was constantly tired. My PCP tested me for all the common culprits and found my B12 levels were around 35 pg/ml. US considers this treatable at 200 pg/ml. Japan/Europe considers this treatable at levels below 500 pg/ml. 

 

Mine was 270.  Which shows in normal range, as you said, but my doctor says it is low enough to treat for sure especially in view of my exhaustion and no other culprit showing up.  

[ktgrok]

Oh, and joint pain plus fatigue - did he do a tick panel?

[Scarlett]

2 hours ago, ktgrok said:

Oh, and joint pain plus fatigue - did he do a tick panel?

For one at least.  I forget the name.  He is seeing more and more of it....it is the one that makes you allergic to meat.  

[kbutton]

4 hours ago, Scarlett said:

Methylmalonic Acid, Serum

I believe that this is an indirect way to test your B12 levels as well--kind of a secondary confirmation. I don't know if it's common to test for this.

20 minutes ago, Scarlett said:

For one at least.  I forget the name.  He is seeing more and more of it....it is the one that makes you allergic to meat.  

That's the alpha-gal one. 

3 hours ago, calbear said:

For those who aren't aware B12 reference levels vary. The US reference levels are significantly lower than Japan's levels. I was dx with pernicious anemia. I don't absorb B12. About 10 years ago, I couldn't make it through the day without taking a nap. Every day for 90 minutes to 2 hours. I was constantly tired. My PCP tested me for all the common culprits and found my B12 levels were around 35 pg/ml. US considers this treatable at 200 pg/ml. Japan/Europe considers this treatable at levels below 500 pg/ml. 

This is really helpful. Thanks! It runs in my family, and I am concerned about it because it sounds like it's hard to diagnose and gets missed a lot. Do you take regular B12 shots, or do you have methylated shots compounded? 

[SoCal_Bear]

25 minutes ago, kbutton said:

I believe that this is an indirect way to test your B12 levels as well--kind of a secondary confirmation. I don't know if it's common to test for this.

That's the alpha-gal one. 

This is really helpful. Thanks! It runs in my family, and I am concerned about it because it sounds like it's hard to diagnose and gets missed a lot. Do you take regular B12 shots, or do you have methylated shots compounded? 

I used to go in to get shots at the Dr. Then I started doing it at CVS clinic with the NP Then eventually I convinced my DH to give me the shots. Dr. gave script for 100 needles which will take me years to go through and a script for B12. I do it every 4 weeks. It gets my levels on average now around 400-450 pg/ml. They occasionally retest me at the end of the 4 weeks when I am due for another shot and then about a few days after my shot to get good sense of where my B12 levels are. 

I do really feel it when I get to the end of the month...I think I have another issue now though possibly...I'm fatigued all the time. I can't do more than a few errands without having to rest and recover the next day or two.

Edited October 13, 2021 by calbear

[Scarlett]

4 hours ago, kbutton said:

I believe that this is an indirect way to test your B12 levels as well--kind of a secondary confirmation. I don't know if it's common to test for this.

Correct. Mine were elevated which he said is to be expected with low vit B12.