Aa
All questions, no answers.
So I've had symptoms for years, that always got ruled to Fibro (Then again, rheumatologist only tested me for RA as far as I know) but they're getting worse.
The most recent was POTS, or at least we think, I confirm with tilt table whenever they decide to book me in...
I also have dry eyes (always have), they get so dry that I get pink eye too often. I also have dry mouth, throat (can't swallow anything without a drink!), and dry sinuses.
I also have a lot of fatigue. Some days are ok, other days it's hard to do anything. I'm prone to dizzy spells as well.
My B12 levels were super low, 101, but now there back up to normal levels. (I don't drink, they say it's because I'm not absorbing it correctly)
I get random stabbing pains that don't feel like muscle pain to me. Usual places are hips (they said bursitis), lower back (tailbone) and elbows. I get muscle pain too, that appears anywhere or everywhere.
The only other thing the rheumatologist wanted tested was a gene for Ankylosing Spondylitis. That came back positive, so they're sending me for MRI.
Other symptoms: Migraines, cluster headaches, sensitivity to light, prone to dry cough, asthma, tons of canker sores (one goes away, 1-2 replace it), depression, carpal tunnel, constipation (idiopathic and constant), sometimes a low grade fever that never forms into a flu (stays only for a day, then gone), I get sick easily.
This is a novel I'm tired or telling. There is probably more, but it's depressing enough to list all these ones.
Any ideas? I don't think it's AS (or don't want it to be), but it could also be Sjogrens which no one has even mentioned yet....Found it by reading up on POTS. I'm just 25 years old...
The most recent was POTS, or at least we think, I confirm with tilt table whenever they decide to book me in...
I also have dry eyes (always have), they get so dry that I get pink eye too often. I also have dry mouth, throat (can't swallow anything without a drink!), and dry sinuses.
I also have a lot of fatigue. Some days are ok, other days it's hard to do anything. I'm prone to dizzy spells as well.
My B12 levels were super low, 101, but now there back up to normal levels. (I don't drink, they say it's because I'm not absorbing it correctly)
I get random stabbing pains that don't feel like muscle pain to me. Usual places are hips (they said bursitis), lower back (tailbone) and elbows. I get muscle pain too, that appears anywhere or everywhere.
The only other thing the rheumatologist wanted tested was a gene for Ankylosing Spondylitis. That came back positive, so they're sending me for MRI.
Other symptoms: Migraines, cluster headaches, sensitivity to light, prone to dry cough, asthma, tons of canker sores (one goes away, 1-2 replace it), depression, carpal tunnel, constipation (idiopathic and constant), sometimes a low grade fever that never forms into a flu (stays only for a day, then gone), I get sick easily.
This is a novel I'm tired or telling. There is probably more, but it's depressing enough to list all these ones.
Any ideas? I don't think it's AS (or don't want it to be), but it could also be Sjogrens which no one has even mentioned yet....Found it by reading up on POTS. I'm just 25 years old...
Sorry I posted in the wrong place a few comments back----Sorry for that---WOW.. This is the most I have felt like someone understands since the 2.5 years they have been trying to figure it out.. Thanksgiving 2011 I got the flu.. Never got over the cough - Dec 20 my Husband took me to my primary.. They did an xray and my lungs were full on (what looked like cotton balls) he send me to a pulm.doc the next AM.. He looke at my CT and said get your affairs in order.. I think it is Lung cancer.. My world crashes. The send me to a surgeon and they did a endoscopy then a needle biopsy and finally a lung biopsy.. NO CANCER... Then diagnosed as Histoplasmosis. --Then Sarcoidoses-- Then IGG4-- I am on 20mg of steriods going down to 15mg-- All they say about what I do have- is that it is necrtizing granduloma.. aka Dead Tissue in my lung. I have alot of pain around my lungs on the outside... swelling then it will go down.. I also have saliva stones and type 2 diabeties and thyroid desease.. Can help but think all this is realated. I am on a research panel at Vanderbuit her in Nash.. I would love to take charge of what I can.. I am 52 years old but I got a lot of life to live..... Any info would be appreciated. Also Dry eyes and left side next pain..
So! Updates.....sort-of!
Had my MRI on Sunday at the hospital, it's day 4 now, and so far no word back from Rhuemy to go in sooner etc, so I'll take that as a negative AS result! (Yay!) No dye was injected though, which I read online is usually how they test for SI inflammation? Oh well!
I was in with my Family doctor to get refills with the boyfriend (he needed his his meds faxed over to the pharmacy) and while I was there I asked about previous blood work results.
1) Yes, they did do T3, T4, TSH, Free T4 and reverse T3, the cardiologist ended up doing the most in-depth thyroid tests. All normal!
2) CRP levels were not as high as I thought, only 9.1? (Mind you, I have been taking NSAIDs most of the time, but not sure that would effect anything?)
3) Rhuemy ONLY tested me for AS (recent) and RA (previous) no other autoimmune dysfunction tests at all. :/ I figured she'd have been a little more thorough, but nope!
Family doc decided to test me for SS-A and SS-B? Just finished with that today.
ALSO, not sure if it's relevant; the last year or so every blood work I've had done (has been a lot!), my blood is very SLOW and I guess I'd call it thick? It doesn't fill the vials very fast at all (not like it used to), which is making me more prone to fainting (I'm a wimp).
They constantly tell me it's slow, and to clench and un-clench my fist, to try and pump more blood. Hopefully unrelated. :P
Cardiologist appointment is still upcoming, and I finally got booked in for the Tilt-Table test (Took forever, October!!! I hate waits!), so not sure what he'll say or do next!
Had my MRI on Sunday at the hospital, it's day 4 now, and so far no word back from Rhuemy to go in sooner etc, so I'll take that as a negative AS result! (Yay!) No dye was injected though, which I read online is usually how they test for SI inflammation? Oh well!
I was in with my Family doctor to get refills with the boyfriend (he needed his his meds faxed over to the pharmacy) and while I was there I asked about previous blood work results.
1) Yes, they did do T3, T4, TSH, Free T4 and reverse T3, the cardiologist ended up doing the most in-depth thyroid tests. All normal!
2) CRP levels were not as high as I thought, only 9.1? (Mind you, I have been taking NSAIDs most of the time, but not sure that would effect anything?)
3) Rhuemy ONLY tested me for AS (recent) and RA (previous) no other autoimmune dysfunction tests at all. :/ I figured she'd have been a little more thorough, but nope!
Family doc decided to test me for SS-A and SS-B? Just finished with that today.
ALSO, not sure if it's relevant; the last year or so every blood work I've had done (has been a lot!), my blood is very SLOW and I guess I'd call it thick? It doesn't fill the vials very fast at all (not like it used to), which is making me more prone to fainting (I'm a wimp).
They constantly tell me it's slow, and to clench and un-clench my fist, to try and pump more blood. Hopefully unrelated. :P
Cardiologist appointment is still upcoming, and I finally got booked in for the Tilt-Table test (Took forever, October!!! I hate waits!), so not sure what he'll say or do next!
T3, free T4 and reverse T3, got it! :) I will definately bring this up in my next appointment with someone (If MRI shows something, I'll probably hear back from the Rheumatologist, if it comes back normal/clean then I have an upcoming appointment with my Cardiologist for the POTS) as everyone shares and has copies of all my bloodwork history. :)
Pink eye is improving with Anti-biotic drops (preservative free), it will probably not be gone until mid next week possibly longer if it was stubborn like last time! (I caught it early, so I hope not!). I was recommended to use artifical tears as well, as needed (last time I used them I needed them like 8 times a day, costs add up!).
I will also look into TMG and methylfolate! I'm already on methylocobalamin so that's good, haha.
Pink eye is improving with Anti-biotic drops (preservative free), it will probably not be gone until mid next week possibly longer if it was stubborn like last time! (I caught it early, so I hope not!). I was recommended to use artifical tears as well, as needed (last time I used them I needed them like 8 times a day, costs add up!).
I will also look into TMG and methylfolate! I'm already on methylocobalamin so that's good, haha.
I had almost identical symptoms, going on for years, I have explored all options, trying medical foods now....
If you tested for T3 , T4 and TSH and not for free T3, free T4 and reverse T3
you have NOT ruled out hypothyroidism at all. The first 3 tests only test for
blood levels and do not test for THYROID FUNCTION!
In other words, according to the standard tests, your circulating thyroid
hormones in the blood are fine, yet they may not be making it into the cells,
You may want to do Dr Barnes basal Temperature test on your own to help you determine your thyroid function. Just look it up online and follow the simple instructions precisely.
Dry eyes are BTW another common symptom in hypothyroidism, which
precedes many autoimmune diseases, if left unregulated.
If your neurological forms of B12 (methylocobalamin) and folate (methylfolate) are low -this cannot be determined by standard tests-
you will certainly have excessive histamine (it does not get recycled and keeps accumulating, causing allergic reactions).
A simple way to verify is to do a trial with TMG (inexpensive) or methylfolate together with methylocobalamin, for 3 months.
Your eye drops probably contain preservatives, which supposedly
inhibit bacterial growth, however they are causing you irritation, thus
causing you even more redness and dryness :(
Best,
Niko
you have NOT ruled out hypothyroidism at all. The first 3 tests only test for
blood levels and do not test for THYROID FUNCTION!
In other words, according to the standard tests, your circulating thyroid
hormones in the blood are fine, yet they may not be making it into the cells,
You may want to do Dr Barnes basal Temperature test on your own to help you determine your thyroid function. Just look it up online and follow the simple instructions precisely.
Dry eyes are BTW another common symptom in hypothyroidism, which
precedes many autoimmune diseases, if left unregulated.
If your neurological forms of B12 (methylocobalamin) and folate (methylfolate) are low -this cannot be determined by standard tests-
you will certainly have excessive histamine (it does not get recycled and keeps accumulating, causing allergic reactions).
A simple way to verify is to do a trial with TMG (inexpensive) or methylfolate together with methylocobalamin, for 3 months.
Your eye drops probably contain preservatives, which supposedly
inhibit bacterial growth, however they are causing you irritation, thus
causing you even more redness and dryness :(
Best,
Niko
Most of it I got! I know I might not have AS just because I have the gene which is what keeps me hoping!
Last I checked (actually asked about it) B12 was in the 400s, and it's gone up since then as well, I think 600s, but it was said in passing and I didn't ask to much. I have no idea what B12 they tested for, Rheumatologist just said "B12" and I figured it was fairly self explanatory! Apparently not!
Thyroid they ALWAYS test me for, like, every single time I go to the doctor, they check me. I believe they tested all three, T3 and T4 for sure, and there is another I think. Comes back perfectly normal, like dead middle, not on the boarder of high or low.
They always check though, both my mom and sister have thyroid issues, usually low (sister was higher as a kid, then it crashed in her teens, and is now lower again).
Also, for the THIRD (I'm super ticked at my health right now) time in the last 4 months that I'd had pink eye. Not viral, bacterial. I always think my eyes are just drier than normal, and then they get totally red (not pink, bright unrelenting red) and then when I wake up (and throughout the day) my eyes are crusted over.
They keep telling me "Allergy related bacterial conjunctivitis" but the allergy eye drops 1. Cost a lot, and 2. Did absolutely nothing beyond stinging like mad and making it worse. :(
Last I checked (actually asked about it) B12 was in the 400s, and it's gone up since then as well, I think 600s, but it was said in passing and I didn't ask to much. I have no idea what B12 they tested for, Rheumatologist just said "B12" and I figured it was fairly self explanatory! Apparently not!
Thyroid they ALWAYS test me for, like, every single time I go to the doctor, they check me. I believe they tested all three, T3 and T4 for sure, and there is another I think. Comes back perfectly normal, like dead middle, not on the boarder of high or low.
They always check though, both my mom and sister have thyroid issues, usually low (sister was higher as a kid, then it crashed in her teens, and is now lower again).
Also, for the THIRD (I'm super ticked at my health right now) time in the last 4 months that I'd had pink eye. Not viral, bacterial. I always think my eyes are just drier than normal, and then they get totally red (not pink, bright unrelenting red) and then when I wake up (and throughout the day) my eyes are crusted over.
They keep telling me "Allergy related bacterial conjunctivitis" but the allergy eye drops 1. Cost a lot, and 2. Did absolutely nothing beyond stinging like mad and making it worse. :(
Hi EponaAV.
OK, so you probably testyed positive for one of the variants of the HLA-B gene, likely the
HLA-B27 gene variation, which predisposes one to :
Ankylosing spondylitis
Arthritis related to Crohn's disease or ulcerative colitis
Psoriatic arthritis (arthritis associated with psoriasis)
Reactive arthritis or Reiter's syndrome
Sacroiliitis (inflammation of the sacroiliac joint)
Uveitis
Please note that this gene variant is not a causative factor on its own and that not all who have it will develop an auto-immune condition.
Other factors to look into is :
1. B12 methylocobalmin (the type used by the neurological system) deficiency, which does not necessarily show on
standard blood tests. What are your current levels of B12 anyway?
Lab ref. values for "normal" B12 levels in N. America are ridiculously low for proper neurological function!
2. Mercury* and other heavy metal toxicity.
* Also associated with Methylocobalmin deficiency
3. Hypomethylation, normally associated with MTHFR gene mutation.
Low methylocobalamin and methyfolate are hallmarks of this mutation,
which may result in allergies (excessive histamine), neuromuscular issues, diminished detoxification, cardiovascular issues (excessive homocysteine)
and a lot more.
4. Low thyroid function-even at subclinical levels may affect some individuals to the degree of the suffering you are experiencing.
Test for Free T3, Free T4 AND Reverse T3. (The standard tests totally miss thyroid resistance).
Let me know if you need any more details and explanation.
I know that this sounds like Gibberish at first, lol!
I hope this helps, however, my comments are not intended as a substitute for medical advice.
Best wishes!
Niko
OK, so you probably testyed positive for one of the variants of the HLA-B gene, likely the
HLA-B27 gene variation, which predisposes one to :
Ankylosing spondylitis
Arthritis related to Crohn's disease or ulcerative colitis
Psoriatic arthritis (arthritis associated with psoriasis)
Reactive arthritis or Reiter's syndrome
Sacroiliitis (inflammation of the sacroiliac joint)
Uveitis
Please note that this gene variant is not a causative factor on its own and that not all who have it will develop an auto-immune condition.
Other factors to look into is :
1. B12 methylocobalmin (the type used by the neurological system) deficiency, which does not necessarily show on
standard blood tests. What are your current levels of B12 anyway?
Lab ref. values for "normal" B12 levels in N. America are ridiculously low for proper neurological function!
2. Mercury* and other heavy metal toxicity.
* Also associated with Methylocobalmin deficiency
3. Hypomethylation, normally associated with MTHFR gene mutation.
Low methylocobalamin and methyfolate are hallmarks of this mutation,
which may result in allergies (excessive histamine), neuromuscular issues, diminished detoxification, cardiovascular issues (excessive homocysteine)
and a lot more.
4. Low thyroid function-even at subclinical levels may affect some individuals to the degree of the suffering you are experiencing.
Test for Free T3, Free T4 AND Reverse T3. (The standard tests totally miss thyroid resistance).
Let me know if you need any more details and explanation.
I know that this sounds like Gibberish at first, lol!
I hope this helps, however, my comments are not intended as a substitute for medical advice.
Best wishes!
Niko
I keep asking the rheumatologists secretary to tell me what exactly she's tested for, unfortunately, it's like talking to a brick wall, like she can't be bothered. BUT the actual doctor is really good apparently.
I'll try again tomorrow to find out.
I'll try again tomorrow to find out.
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