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Autoimmune, neurological problem, or something else?

For the past year I’ve had to put my life on hold due to a bunch of symptoms.  I still have yet to figure out what is going on even after doing tons of tests and seeing multiple doctors.  I’m a 25 year old male in good shape.  Here are the symptoms I experience pretty much on a daily basis:  

-Bradycardia (38-55 bpm)
- Heart palpitations/PVC’s
-Orthostatic Hypotension/intolerance
-Light headed and dizzy (I feel like I’m about to pass out if I do anything physical or change my body position)
-head pressure and tension headaches (especially in the back of my head)
-low body temperature (95-98)
-systolic hypertension (systolic BP is usually around 140-160 and diastolic is normal)
-Low metabolism (easy and quick weight gain), high cholesterol
-sleep problems (insomnia, broken sleep, never feel rested)
-Anxiety/depression (I have gotten this under control with Celexa)
-Acid Reflux every day (treated with Nexium, possibly causing damage or irritation to Vagus nerve?)
-fatigue
-slow healing, easy bruising/infections, allergies
-chest discomfort, occasional heart pounding and pain
- blurry vision and trouble focusing

I’ve also recently noticed some cognitive problems like stumbling on words and forgetting my train of thought.  I realize these are a ton of symptoms that affect multiple body systems, which is why this has been very difficult to get diagnosed.  Most doctors have chalked it up to anxiety even though I know something is physically wrong with my body, and the source of my anxiety is these symptoms.  I didn’t have any of these symptoms prior to a year or 2 ago.  I’ve had my heart checked as well as a CT scan of my brain, blood and urine analysis is somewhat normal.  It did show that I am deficient in Vitamin D and Vitamin B12 even though I take a multi vitamin (due to Nexium maybe).  Also, my Thyroid levels (TSH) were 2.9, which are kind of high but not out of range (not enough for hypothyroidism diagnosis), and my reverse T3 was 40 which is high.  It also showed I have high levels of ANA, but the rest of my blood was normal so my doc and rheumy think it’s a false positive.  I had a saliva test that showed somewhat lower levels of cortisol and DHEA.  Haven’t checked anything with my pituitary yet.   Some other, possibly helpful, background information:  I have bad posture and neck/back problems, and 2 years ago I was bitten in the leg by an unknown bug in mexico that caused some sort of extreme reaction and infection turning it partially black and very swollen (IV antibiotics for a month), but was never checked for Lyme Disease.  I also was on Doxycycline for 2 years (I’ve come across a few things that indicate this medicine could cause elevated ANA, and possibly even drug induced lupus), and have been on Nexium for 1 year.  Any information or help is GREATLY appreciated as I am desperate for answers, thank you!
12 Responses
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Avatar universal
I complained enough that I finally convinced my internist to do a thyroid ultrasound where he found nodules on the thyroid gland and referred me to an endocrinologist.  I have Hashimoto's thyroiditis, yet my T3 and T4 test were normal.  The ANA results were 299.6 IU/ml when normal should have been 0.0-5.5.  Find a specialist who knows how the thyroid gland works and follow his suggestion.  The thyroid runs everything in the body.
Helpful - 0
Avatar universal
I know you said you were deficient in vitamin B-12, and B-12 deficiencies can cause a host of neurological issues.  Taking acid blockers like tums long-term (I'm not sure what you are on) depletes B-12 so that you really run the risk of getting neurological issues in the future from a B-12 deficiency

I would say it's worth looking into..
Helpful - 0
798555 tn?1292787551
The thing with Hashimotos is that in the beginning you can have high antibodies and it takes a while for this ( sometimes years) to finally affect the thyroids functioning ability to produce correct hormone levels. Newbies with Hashi have reported this on the thyroid forum - they were surprised, as were their docs.

Having T3 lower than half of the range IS enough to get hypo symtoms. I personally  know people in the 'real' world in addition to the thyroid forum that had symptoms with low, but in range T3.

And that high RT3 shows that something is not working right. High RT3 is actually treated with more T3 med - sounds backwards I know. The therory is the extra T3 pushes out the stuck RT3 and after several months T3 meds is stopped and RT3 goes away. This should be tested again as it is very rare. Yahoo has a specific Reverse T3 group. That forum is hard to follow, but its the only RT3 forum I know about.

I am surprised that your doc tested Reverse T3 but was not test for Hashi antibodies.  Getting RT3 tested is hard to get accomplished. There are some on the thyroid forum in the past that could share RT3 experiences if you post there. Its not easy to correct, but can be done. That should be 'fixed' before adding T4 med to see if you also have symptoms of Hashimoto hypothyroid since getting any T4 med will add to the RT3 levels.

****Sounds confusing, but he general approach is fix the RT3 first , confirm with lab tests, if you still have symptoms then treat the hypo thyroid with T4 or both T4 and T3 med if you dont convert well. Either way, for sure get the Hashi Tgab and TPO antibody tests done. Hashimoto, since autoimmune based can be a whole different animal than regular hypothyroid. I know people with both.****

Adrenal fatigue, not full blown addisons can be treated with vit C, and adrenal adaptogens like holy basil extract. You can learn this on the complimentary med forum here and maybe the adrenal form - but the later is more for Addisons. Hormones work as a team. If one organ is malfunctioning one of the others can be overworked.

later
Helpful - 0
Avatar universal
Niko,
Thanks for getting back to me as well, I am glad someone is putting in some time to help me, it's refreshing after these hundreds of doctor visits with no one caring or understanding!  My GERD was pretty much diagnosed by my GP based on symptoms and frequency, but I'm seeing a gastro in a few days for a barium swallow and upper endo to see if I have a hernia or something else going on.  I am trying not to add any more supplements to my daily regiment except for the essentials, but while on Nexium i've noticed my body doesn't absorb many of the things I put in due to no stomach acid while on the meds.  So it's kind of a catch-22 and very frustrating.  Dr. Lam's website has been very informative for me but most doctors I have seen don't really acknowledge Adrenal Fatigue so it's been tough.  Thanks again and hope you had a good thanksgiving!
-DAVY
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Avatar universal
LazyMoose, thanks for the response I really appreciate it!  I am just now learning of the links between adrenal problems, thyroid problems, and digestive issues.  It's very promising as it's taken me over a year to find links to all of my symptoms!  My free T3 I believe was 1.1 which is low but not out of range and my free T4 was 2.7 which is also in range but very low.  They said I am slightly hypothyroid but not enough to require treatment.  So not sure how I go about raising those levels..?  My reverse T3 was 40 which is out of range on the high side which means my body isn't converting T3 to T4 or something like that very well.  This can be causing my low body temperature apparently.  I'll look into doing the PH saliva testing to see what I can come up with.  I am assuming that I have high stomache acid and not low acid because Nexium works for me.  I don't want to be on the very expensive Nexium my whole life though so I'd love to find a solution to GERD as well!  Since I have positive ANA I will look into getting tested for both Addisons and Hashimoto's.  Thanks again for your insight, I'm trying to soak up as much information as possible!
Helpful - 0
798555 tn?1292787551
I was once in your boat. Lots of great in other comments! Lots of your symptoms cross over as you are now fully aware. I hover here now and then from the thyroid forum as most , but not all thyroid disorders are autoimune based. About 75% of your symptoms are very well know to thyroid sufferers. And Docs do not diagnose this well.

TSH is not the best test. Free T4 and Free T3 test results are essential to know. If you are still in these ranges but low, assume all is well. If you are obviously low, further testing of autoimmune thyroid antibodies should be looked into.

For "labeling" sake low thyroid T3 or T4 levels with positive antibodies is an actual autoimmune disease (Hashimoto) which is managed in varying degrees for life. Low thyroid hormone with negative thyroid antibody testing is a disorder and is possibly cured. If either is found the thyroid forum here at
MD can be of great help.

specific thyroid antibody tests:

TgAb

TPO

TSI - this one is only for only for Graves (hyper)

I was told surgery was my only option left for my nighttime GERD as PPI drugs were not working and made me unable to digest food or lay flat without suffocation of liquids leaking past my Lower Esophageal Sphincter. I tried all available PPI's in the USA 4 years ago. I looked at the possibility of having low stomach acid from my under treated low thyroid disease. Thyroid controls a little bit of everything. I looked into body PH as well.

I did morning PH saliva testing with a roll of the test strips that turn color.. Its confusing but you can have extremely acidic body PH (unhealthy) while at the same time having low digestive acid (wont digest and causes reflux, GERD) production from low thyroid. Low stomach acid also contributes to Candida types of bad bacteria in the stomach - and this can cause GERD. I did a morning saliva home test for Gut Candida - I continuously tested positive. I asked friends to perform this on them selves and they tested negative, but not I. Google home " saliva in glass of water candia test".

I changed to an alkalizing diet (no red meat or gluten or sugar) green veggies and chicken was common, and watched morning PH move towards alkalizing in only 3 months. This continuously improved the morning water glass candida testing. Seriously it was real. I took sups / herbs for candita as well. This all improved GERD and got my body out of the GERD cycle while discontinuing PPI's.

My LES (aka 'flapper valve" LOL) continued to heal. I could lay flat after one year, some night were better than others though.

I then tacked my thyroid disease as I believe this was the cause in my GERD. I learned all I could, told docs what I wanted, and bingo I now feel a lot better thyroid wise and GERD (fingers crossed) is gone for the last two years. If my thyroid levels go a little toward hypo my signs of GERD do come back and I am careful of what I eat till higher thyroid med kicks in.


My only source of sugar is from granola bars now. I eat way less greasy burgers and way less pizza. No lactose. Almond milk tastes better too.No soda pop. Less fruit juice (sugar loading). I do eat gluten again.

Hope this helps along with the others input. Any questions just ask or PM.
Helpful - 0
1530171 tn?1448129593
Hey DavyJones2,
Check out Dr Lam's website regarding adrenals. He has an excellent tutorial.
You may find some useful information there.
As far as your supplementation goes, just a word of caution.
Taking tons of vitamins and mineral supplements may give you some benefits,
however, there may also present a waste management issue to your body.
Any extra processing while dealing with your existing symptoms is another load your body does not need.
So, my suggestion is to improve the quality, delivery and assimilation of nutrients-from food intake or supplements- and modifying the quantity.
Personal example: I take 1oz twice daily Undenatured Whey Isolate Protein Powder mixed in my all natural smoothie (no blender as it alters- it is sensitive to heat and vibration) in order to boost my production of Glutathione- the body's master antioxidant. Glutathione recycles vitamin C after vitamin C has performed its function as an antioxidant. Otherwise this
creates moderate toxicity in the body with a cumulative effect. So a small dose of high quality C- 500mg- with bioflavonoids is plenty when combined with glutathione.

Your GI and digestive issues have to be explored soon though, before adding more supplements into your regimen.
How was your GERD diagnosed? Just wondering.

Take care and happy Thanksgiving!
Niko
Helpful - 0
Avatar universal
Thanks again for the response!  I haven't had an ACTH stimulation test yet but I'll ask my doctor and see what he thinks.  I didn't really consider Addison's since I don't have some of the tell-tale signs like weight loss and low blood pressure (even though I used to have very low blood pressure but then I think I over-corrected and combined with vit. B deficiency now have high systolic pressure).  Maybe it's some combination of adrenal, thyroid, and pituitary malfunction since I have symptoms of all of those..?  My doctor isn't an LLMD.  I am also on a zinc supplement.  I take tons of vitamin and mineral supplements but still seem to have some deficiencies so might be a gastro problem there.  I will look for an LLMD around the area to see if i can get tested for pathogenic infections.  Do you think I should try the adrenal supplement again and give it more time?  It's pretty much a combination or herbs that are supposed to stimulate cortisol I think.  I also thought about going on a DHEA supplement since my levels of that are low.  Thanks again, get back to me whenever you get a chance, I appreciate it!
Helpful - 0
1530171 tn?1448129593
Doxycycline has only a bacteriostatic action on Pathogenic Mycoplasmas,
so while you were on it their growth was probably halted. That gave enough time for the  immune system to id and tag them-as they are extremely elusive- but could not destroy them, as it was not strong enough!
I have not studied the direct effects of doxy on Borrelia (lyme) infections.
Nonetheless, these infections often coexist as co-infections in many so-called auto-immune diseases.
These low grade infections are opportunistic, taking advantage of weaknesses and high stress, for their growth and activation.
They may stay dormant for years in the body before any symptoms are experienced.
Regarding your  low cortisol levels did you get an ACTH Stimulation Test?
Make sure this is checked properly so you can rule out Addisons disease,
even if your symptomology is not consistent with Addison's.
My intuition still is that you have a multi-systemic pathogenic infection, that is responsible for most of this. And if  your doctor is not an LLMD, I doubt that he can help you.
One thing to keep in mind is when on any treatment, there may be a die off  or Herxheimer's effect- re: adrenal supplement.
So please have another look at the info from my previous reply and checkout  the references on pathogenic infections.
I forgot to mention to also look into a possible zinc deficiency.
Take care.
Niko

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Avatar universal
Nike and Red Star -
Thank you so much for responding I love getting any and all help at this point in my search!  Red Star, I have come to understand that my malnutrition could be causing at least a few of my symptoms but heres my problem.  I am on a very substantial multivitamin and other supplements that should be giving me WELL over the needed value of all those vitamins and minerals, yet my blood still shows deficiencies in vit D and B.  Could be the Nexium maybe?  I also take a magnesium supplement but I guess the Nexium could be affecting that as well.  The other problem is that I can't really go off the Nexium because without it I have 24/7 terrible reflux and to be honest I'd rather take my chances with vitamin deficiency than that nightmare.  And I really don't want to do any surgery to correct the reflux as that is a very shady procedure with a lot of negative outcomes.  My doctor is concerned with my Thyroid but is reluctant to treat it because he thinks it's a symptom and not the cause.  Also, my cortisol levels were very low which he thinks is due to an adrenal or pituiatry problem and not thyroid.   Niko - I've just come to realize that the infectious bite I had in mexico a few years ago could have something to do with this, as I didn't have a single symptom before that.  But I also didn't show any symptoms until about a year or 2 after that bite which makes me believe otherwise.  I have seen a naturopathic doctor and she put me on an adrenal supplement which caused all sorts of problems so I went off of it.  I might try another naturopath to get a second opinion to see if it could be thyroid related instead of just adrenal.  From my personal research it looks like Lyme disease and other late onset bacterial infections are kind of a controversial topic in the medical community.  Would my doctor be willing/able to test for something like that?  Even though my infection was 3 years ago?  I was on doxycycline for awhile (because of acne) so I would assume that would've cleared up any lyme infection? Maybe not.  I would give just about anything for a clear and precise diagnosis or answers to my questions at this point so I can start my journey in fixing this and get back to living.  Thank you both for your help, please get back to me I appreciate it!
Helpful - 0
1530171 tn?1448129593
Hey DavyJones2,
Welcome to the forum.
Unfortunately, you are on the medical merry-go-round ride.
Please get off it as soon as possible!
Some very useful comments by Red Star, however, you may need the assistance of a health coach like a good naturopathic doctor, to stir you
towards health and wellness. Your situation is a bit challenging for you and your health care professional alike.
Every medical specialty has it's expertise and at the same time a very strong bias. The patient is treated like a sum of parts, with each specialist looking at a part, an organ or a  whole system at best, not focusing enough at the importance of all the interconnections and relationships of those, from a holistic point of view.
Your digestive issues may be related to many of your impaired bodily functions. You are what you absorb and assimilate.
Get a complete mineral and electrolyte analysis,and complete blood work for nutritional deficiencies.
Any deficiencies must be properly addressed taking into consideration
delivery and assimilation dysfunction. I.V., sublingual or transdermal delivery may be needed. Look into Iodine , Magnesium, Vit.K, Glutathione,
Folic acid deficiencies. B12 use sublingual or IV methylocobalamin form-not Cyanocobalamin!
D3 use emulsified form and also get some sun exposure-best times 11-2-
contrary to most suggestions- is the best time for SAFE exposure to UVB
rays as long as you limit the exposure time. Please research this well as
this deficiency is associated with a multitude of health issues!
And a lot of info out there is WRONG- including many medical studies!!!

Doxycycline is the standard antibiotic treatment for Pathogenic Mycoplasma infections, however there are very few doctors around who are familiar with the specifics. The expert in this field is Dr.Garth Nicolson.
Check at immed.org
Also check for Candiasis and Mycotoxins, specially important in the event that you were not under a Prebiotic and Probiotic supplement protocol while taking Doxy.
It is possible that you have underlying pathogenic infections-perhaps from long time ago and dormant- and coinfections including Borrelia. So check the above link and also ILADS
Regular Doctors and Specialists -if knowledgeable- will probably avoid treating those conditions, fearing repercussions from governing Medical authorities for breaking protocol! The business and the politics of the medical system are as twisted as a corkscrew, lol.
So you need to find an LLMD and to deal with IGENEX Labs for the tests.
Wishing you well!
Niko

Helpful - 0
1756321 tn?1547095325
Normally, the stomach pH is very acidic but hypothyroidism tends to slow metabolism in general which causes the parietal cells in the stomach to produce less stomach (hydrochloric) acid. Insufficient stomach acid is the most common cause of non obstructive acid reflux. Besides, correcting low thyroid hormone, supplementing with digestive enzyme supplements to help break down foods, and betaine HCI with pepsin supplements to help increase stomach acid is an effective way to help prevent acid reflux.

PPI's (eg: nexium) new warning out this year is magnesium deficiency.  Magnesium deficiency symptoms include high blood pressure, heart rhythm problems including palpitations and PVC’s, fatigue, insomnia, vertigo/feeling off balance, blurry vision, chest pains, anxiety, depression, and ironically acid reflux (magnesium helps the sphincter at the bottom of the stomach relax, allowing the food to go down).

Vitamin B12 deficiency symptoms are numerous and include extreme fatigue, poor healing, depression, anxiety, dizziness, easy bruising, cognitive issues, ADD symptoms, palpitations, headaches....

Vitamin D deficiency symptoms include bone and muscle pain, high blood pressure, allergies, depression/SAD, fatigue, insomnia...

Of course hypothyroidism can cause most of these symptoms as well. Low metabolism, low body temperature, high cholesterol, and unexplained weight gain are classic symptoms of hypothyroidism. Bradycardia and orthostatic hypotension are also symptoms of low thyroid hormone.  Easy bruising can be seen with deficiencies of iron, vitamin B12, vitamin C, folate, vitamin K.

"If you suspect low thyroid function, but have had "normal" blood tests, you and your doctor may want to take a second look. A TSH of greater than 2.5 is not normal.

Nine years ago, the American National Academy of Clinical Biochemistry narrowed the reference range for thyroid stimulating hormone (TSH) from 0.5-5.0 to 0.2-2.5mIU/L.  Similar revisions by the American Association of Clinical Endocrinologists (AACE) meant that 13 million people previously considered to be normal, could now become officially diagnosed with under-active thyroid.

You should also consider the fact that TSH is lower if the blood test is taken later in the day, and if you were not fasting. Your TSH reading may be artificially low if you are deficient in cortisol, an adrenal hormone.

Another very important test for thyroid is the blood test for thyroid antibodies. Thyroid antibodies can cause symptoms even when TSH is normal. In particular, they have been shown to have a role in fertility and miscarriage." - Thyroid Disease - Sensible Alternative
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