I'm confused. Don't know what to do.

I am new around here so let me try to give you a little bit of background without making it my life story...

At 14 I was finally diagnosed with depression and anxiety (genetic) and was put on medication and sent to counseling. I have been on one SSRI or another ever since with the exception of a couple of years when I had no insurance. At 15, I started sleeping A LOT. I would sleep 14 hours a night if I could. Of course my parents just thought I was lazy. At 16, I finally went to an allergist and found out I'm slightly allergic to darn-near everything they tested. I then got a nice stash of pills to take each day for allergies. I also would have to take about 3 days off school about every 2 months due to extreme fatigue. It seemed that body just needed to recuperate. At 17, my mother realized there was something else going on. She has Fibromyalgia, among other things, and saw that what I was going through mimicked her conditions.

Fast forward to today. I am 23. Both of my parents are on SS Disability due to chronic health issues. I've been on and off short-term disability (currently on) while doctors are baffled about what to do with me. Overwhelming fatigue, weak muscles, dizziness, brain fog, disequilibrium, trouble forming sentences, neuropathy, heart arrhythmia  etc. Neurologist said "You have depression. Take your meds." And that was about it. Not going back to him! Cardiologist did EKG, EEG, ultrasound, and 24-hr Holter monitor. He said he didn't see anything of concern and wrote me off as well. Finally found an Internist who actually BELIEVES me. She has tested everything. Xrays are clear, MRI is clear, blood work is mostly normal. Found my Vit D levels were low which we corrected and cortisol was high. We were in the process of pursuing that when, suddenly, I felt well!

From about late December through early April I felt GREAT! Then I felt like hell again. Because I have trouble standing and I feel worse in the heat, Doc ordered a tilt table test which was positive. Finally! A diagnosis! We've been working through the different common NCS meds to find the right mixture for me. So far we have nothing.

But between reading up on NCS, and hearing the stories of the people on this forum, I don't think that's my problem. I mean, I believe I have it... but only very mildly. I've only passed out twice aside from the TTT. I've suspected all along there's something else going on. Then yesterday I went back to the Cardiologist on referral and he said "NCS won't cause your fatigue. Keep doing what you're doing and I'll see you back in 6 months."

I was so pissed! What I'm "doing" isn't working! I was so excited to finally have a NAME for what I have... and now it looks like NCS is just a footnote in my REAL problems. And I don't know what to do. I'm positive it is a dysautonomia, whatever it is. Since my cortisol levels were high last year, I think maybe we'll start there again. Maybe it is my adrenal gland and I have adrenal fatigue? I don't know... I'm just lost and frustrated right now... Any suggestions or stories? Or a shoulder?

[LowMac]

Bless your heart. I have a son older than you and a daughter who is younger - who I'm letting-go to attend college in another city (big spike in my anxiety levels - phew!).

I find a lot of similarity in your case, to mine. The only difference besides my being male - I was diagnosed with Hashimoto's thyroiditis & hypothyroidism in 2003, at round about 40. I do also have dysautonomia but I've never asked for a tilt-test because I know for a fact it's there and has been since my teen years.

Because of my unresolved fatigue, muscle weakness and neuro type symptoms, one board certified MD suggested I have comorbid Chronic Fatigue Syndrome because I have apparent immuno-deficiency including allergies (i.e. thyroid autoimmunity and mild persistent asthma).

Have they tested your other vitamin levels, such as B12, B6 and E? If not, you might discuss this with your Dr. because each of these can negatively affect the nervous system if deficient (as can low D) but the problem is usually easily reversed with supplementation of deficient vitamins. I was found deficient in D and E and insufficient (low normal) in B12. I had my doctor test me for kidney/liver levels and anti-mitochondrial antibodies (AMA), to make sure my malabsoroption was not due to kidney or liver problems. I do have fatty liver (I'm moderately overweight) but no biliary involvement or hepatitis. It doesn't hurt to tule these out if it has not already been done in your case (probably has).

Also, this is another suggestion to discuss with your Dr. but "thyroid antibodies" can be present/positive before thyroid hormone levels become imbalanced, so if these haven't been tested-for, this might be something to also consider. According to the U.S. NIH (PubMed), thyroid antibodies can cause symptoms even when the person affected is in a euthroid state (normal hormone levels).

I also feel that with symptoms like you are experiencing, that a person's sex hormones might also need tested and these can be affected if adrenal hormones are low, such as pregnenolone and DHEA which convert into sex hormones (both androgens/male & progesterones/female, which both sexes have) as the body needs them.

I personally also have adrenal fatigue - also since 2003 or earlier and repeat saliva and urinary cortisol tests showed mine to be low but DHEA was always normal or even high-normal. I've always felt that immunity, dysautonomia and endocrine function are all tied closely together. One imbalance of a system can affect one or all of the others.

These of course are fellow-patient layopinions but something worth discussing with your doctor if not already accomplished.

I hope you get the needed answers soon!

[LivingInHope]

Although cortisol can be higher when you are stressed, I do think you should definitely pursue your cortisol and also monitor vitamin D and take a look at your calcium level.  They should take a thorough look at your adrenal function.   They should do other endocrine hormone testing in addition to what you've had done.  And if warranted with further testing, they should take a look at your pituitary gland.

[EmilyKirsten]

Thanks for the suggestions! My doctor had suggested an endocrinologist and I think that should be our next step.

All of my vitamin and mineral levels have been checked and the only one that wasn't in the normal range was the D. I think this has to do with living in NE Indiana (where the sun goes takes a vacation all winter long...), having fair skin, and being inside a lot because of allergies and heat sensitivity. (I do take vitamin supplements.)

I know my thyroid has been tested and tested again. For me it's about as common as a CBC (complete blood count). I can't say for sure she has tested me for thyroid antibodies but it wouldn't surprise me. She is very thorough and has tested me for all other types of antibodies. Lupus antibodies, cancer antibodies, HIV, the different Heps, etc. All the ladies at the lab know me because I'm there so often... Sad but funny!

Our only positive blood tests to this point have been high prolactin (a sexual hormone, but it was only very slightly high) and high cortisol. I know cortisol is a stress hormone but I am rarely stressed. I am a very laid back person and take everything with a grain of salt. The blood that had the cortisol was taken in to morning when cortisol levels are naturally a little high. To be sure, we did a 24hr urine sample as well to look at the bigger picture - which was also high.

I think an endocrinologist needs to be the next step. We need to check out adrenal dysfunction and possibly pituitary. I'll talk to my doctor about that when I see her on Friday. Thanks for the discussion!

[LowMac]

That elevated cortisol in both blood and urinary measure, sounds like an important lead to me because it might indicate a trend toward cushing's disease, which in many cases is treated with a cortisol-inhibiting drug. You appear to be thin rather than having upper body weight gain but it could be that this has been detected early and some people experience fatigue and muscle weakness as the first symptoms.

Adrenal fatigue can cause high cortisol in the alarm phase of it, before a progressive drop in it begins to happen but with this sub-clinical type adrenal dysfunction, the cortisol usually fluctuates within the normal values range or just slightly outside of it. With a 24 hour random urinary cortisol being high, that means it averages high rather than just spiking at times and is why the urinary measure is the test most often used to detect cushings.

They may next want to take an MRI of your pituitary gland and an endo-Dr. would definitely be who you need a referal to for more complete evaluation of it.

Best wishes with it and let us know how it goes!

[LivingInHope]

One high prolactin level was enough for a primary care physician I had at the time to send me for an MRI of my pituitary, where a tumor was discovered.  Low Mac brings up a possiblity that really needs to be addressed of Cushing's with the high cortisol.  You might want to visit another medhelp forum- the community for those with pituitary and other brain tumors, because the moderator on there, Rumpled, has Cushing's and she had two tumors, she says, one was a prolactinoma and the other caused her Cushing's, I believe!  She would be recommending a dynamic MRI of your pituitary, with and without contrast and if anything discovered, getting to a neuro-endocrinologist.

[Heiferly]

One thing I would highly recommend is getting a copy of the actual results from your TTT (not the report from the interpretation from the tilt, but a copy of the actual minute-to-minute tracings and readings).  This may be much more enlightening than just the diagnostic label "NCS" and could possibly shed light on whether the cardiologists assumption that your diagnosis from the tilt is inadequate to explain your symptoms is likely accurate or not.  It is important to realize a few things:  

1.  Different doctors interpret tilts differently and, quite frankly, some are better at it than others.  

2.  Some doctors are going by different diagnostic criteria than others.  I personally think it's wisest to stick with what the "big wigs" are currently saying, which is why I specifically compiled that POTS diagnostic criteria page (POTS seems to be one of the ones where docs are all over the board, but this happens with other forms of dysauto too).  If we don't have universally accepted standards yet, at least we can go with what's being published in the most reputable peer-reviewed journals or the most relevant medical textbooks by the most renowned experts in the field.

3.  If you sit down and read a medical textbook about dysautonomia, you will alternate between laughter and anger as you pass across sentences that DIRECTLY contradict things your own specialists have told you with the utmost confidence.  Mind you, your neurologists, cardiologists, endocrinologists, etc. aren't boneheads; they just haven't read several 300 page textbooks devoted solely to the autonomic nervous system, catecholamines, or autonomic diagnostics.  (If they got that in-depth into every nook and cranny in medicine, they'd be 90 before they finished med school.)  Nonetheless, they are making perfectly reasonable assumptions based on what they DO know about what they DON'T know (i.e. your case) that are just plain wrong, according to the experts who actually do the clinical studies to test these things.

4.  In short, you may want to have some things double-checked by an expert at some point.  (This is why places like Mayo, Vandy, CC will ask for the original copies of tests and not the reports; so they can re-interpret them themselves in case there's a difference of opinion in how to interpret the test.)  You may also want to see things with your own eyes, in case you have questions about your test results that you didn't even know you had until you actually got to SEE the results.  (E.g., is it significant that my blood pressure did X at this point in the test?  Isn't a rise in heartrate in excess of Y indicative of Z; why aren't I diagnosed with that?)  If all else fails, just tuck it away in your filing cabinet and you can run off a copy for any new docs you see that are interested in having a copy.


My other thought is that, considering fatigue is one of your most prominent symptoms, have they referred you for a sleep study at any point?  There are several things that could be identified in a sleep study which might account for a number of your symptoms; at the very least, it would be another thing to get ruled out and crossed off the list, so to speak.  

[Heiferly]

Edit:  I should've specified excessive sleepiness rather than fatigue, because that's not exactly the same thing.  If/when you discuss it with a sleep doctor, you're likely to hear the term "excessive daytime sleepiness" or something like that.  A number of people with dysautonomia do have some form of sleep disorder as well, so it could go hand-in-hand.

[EmilyKirsten]

Thanks everyone!

I have had 2 MRIs over the years. The first was when I first passed out to check for stroke (my father had his first stroke at 21 and has had 3 others since) and the second was to check for MS. If I had a pituitary tumor wouldn't that have showed up on at least one of these MRIs?

Also I have had 2 sleep studies and it was discovered that I have very mild sleep apnea. I was fixed with a CPAP but noticed no change.

[LivingInHope]

If they did not do a special dynamic pituitary MRI, but rather general brain MRIs, than it is very possible a pituitary tumor could be missed.   The pituitary is a very small gland and they do the MRI in a different way than a general brain MRI when they suspect a tumor.

[LowMac]

SurgiMenopause makes an important point in that, if they were not specifically trying to rule-out or conform a pituitary problem, they may have been conducting more of a general MRI and it may take a highly qualified endo-Dr. to perform a more specific one. In addition to that, I can guarantee you they have more blood work that has yet to be done that might also still hold answers. You would be amazed at how many things there are that can be checked for, many of them having to do with nutritional deficiencies that one would never suspect they have, that can be in the mineral, vitamin, proteins and electrolyte categories.

Both my mother and my sister for example, had episodes of passing out at different times, with no explanation. Amazingly, with my mother, she was found to have low potassium and with my sister it was low sodium. In fact the doctor that found my sis's low sodium said it was so bottomed-out, that it was "undetectable" and he was amazed that she was still functioning.

In my case, I have some peripheral neuropathies, that seemingly also involve motor nerves because I have some clumsiness in my hands and legs at times and some muscle-weakness, in addition to sensory nerve type problems of aching, stabbing and hot pins/needles sensations. My neuro had the forethought to order vitamins I had yet to be tested, including E and B6 and my E was very deficient, which by itself can account for my neuropathies. Even so, he is making sure to rule out other contributing factors. He has ran across E deficiency, so rarely, that he was not totally sure what dose I needed to replace and then afterward, what dose to maintanence my E levels. This is why I've posted this as a question on some of the MedHelp forums - at the same time adding other aspects to my questions to forum experts.

With my having 2 vitamin deficiences (E & D) and low-normal B12 (all now treated), he saw a trend toward nutritional problems, so then ordered me an "L-Carninitine" level because this one can cause neuro symptoms when low as well (awaiting results). I mention my case, to give example of the process of testing more things as a doctors goes along with the diagnostic process. It seems to take as slow as an itch and I too become impatient at times with the process but all we can do is be patient, learn as much as we can as we go along and ask questions - including that you can ask on forums like this one. I suppose that's where the term "patient" comes from because we have to go throught such a drawn-out process at times for diagnosis and treatment to be determined.

Stay encouraged because I really feel those answers will come over time and maybe soon. Do keep posting and asking questions as you need-to because this can help you better cope with the waiting. We're rooting for you!

[LivingInHope]

I had a regular internist order my pituitary scan.  It just takes a radiology location who knows how to do it right and hopefully, she can get the latest 3 Tesla MRI machine, which gives better detail.

[EmilyKirsten]

I saw my internist yesterday and she said a few months ago she actually checked my Cortisol and Prolactin and both were normal. All of my tests were normal. So it isn't the pituitary or adrenal glands. We're going to do a CT scan and *another* 24-hr Holter monitor. I asked her to please check into Chronic Fatigue Syndrome. Since everything else is normal we can try for a diagnosis of CFS if everything else is ruled out. At least then I'll have an answer for people when they ask what's wrong with me...

[LivingInHope]

You said before you had a slightly high prolactin level and a high cortisol reading- are you saying you were mistaken about that?  If you had one set of abnormal numbers and one other set normal, that does not eliminate the possibility of a pituitary issue- just ask Rumpled on the pituitary/brain tumor about her prolactin levels and the discovered prolactinoma and about cyclic Cushing's.

[Heiferly]

This is probably a really stupid question, but just to rule out the obvious ...

POTS is sometimes misdiagnosed as NCS.  You don't meet the diagnostic criteria for POTS, do you?  Because sometimes cardiologists will accidentally read a typical POTS holter result (with periods of sinus tachycardia being the "only" abnormality) as being "normal" since that would be normal IF you were doing something active rather than just standing, etc., while you had the sinus tach.  

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196

Sorry if you've already considered that and ruled it out and I sound like a moron for suggesting it.  I just want to make sure you're covering all your bases in case a misread of your initial holter hadn't been considered.  

(POTS is associated with a long list of possible symptoms; if you're not familiar with those, you can look them over here:

http://www.dinet.org/symptoms.htm )

[EmilyKirsten]

It was a year ago the we tested and my levels were high. Prolactin was barely high. She said usually when there is a prolactin issue the numbers will be 50-100 point higher than normal. I was only 10 or 15 - I can't remember. And Cortisol was elevated but it wasn't TOO drastic. This spring we tested again and both were in the normal range.

[EmilyKirsten]

I honestly couldn't tell you if I meet the criteria for POTS or not. My heart has been behaving itself pretty well lately. Last year when I did the holter I felt that the cardiologist basically dismissed me. He said I had quite a few arrhythmia's but he wasn't concerned. As soon as I get done writing this, I'm leaving to get set up with another holter monitor. This time my internist is going to interpret the findings. So I have to make sure I'm active today to try to get my heart to misbehave while it's being watched! haha

[LowMac]

Heiferly's suggestion sounds like a possibility as well, especially with the fact that CFS and POTS are two disorders that have often been confused with each other and some people who've been diagnosed with one, actually have the other. This is one of those unfortunate things that happens in medical practice, especially when doctors do not recognize the existence of one or the other. Stangely, some doctors recognize neither of them and I know this first-hand by asking some I have been to. Some had never even heard of POTS or dysautonomia but most knew about CFS, just didn't feel it was a real illness. Apparently they haven't read the U.S. National Institutes of Health pages on CFS, which not gives statistics on CFS and diagnostic criteria for it as well.

I believed from 2003 to this year that I had comorbid CFS to my autoimmune thyroid disease, until the 2 vitamin deficiencies (E and D) were found and the insufficient B12 level (lower-normal). I now believe these are largely responsible for my neuro type symptoms but I also believe my dysautonomic symptoms would meet the criteria for POTS (i.e drop in BP upon standing and elevation of heart rate). CFS in med research has orthostatic hypotension as a common feature of it, which shows how closely related they are.

One thing that will comfort you as you go through the process of elimination and the diagnosis of what is actually there (possibly CFS), is that serious disorders are being ruled out. Not that I'm not placing POTS or CFS in the serious category because they can be life-disrupting and seriously affect quality-of-life but treatments can help a great deal and they are not life-threatening. Some people actually see full recovery from CFS in 2 to 5 years or longer and I personally know 2 people who fully recovered and no longer experience its symptoms.

Keep us posted as you can.

[LivingInHope]

On this thread:
http://www.medhelp.org/posts/Brain-Pituitary-Tumors/prolactin-levels---pituitary-tumor/show/754716
Rumpled, who had a prolactinoma removed said:
"My initial readings were barely abnormal - about 10pts above normal. "

[Heiferly]

Just a quick clarification on something LowMac said.  A drop in BP upon standing is not one of the diagnostic criterion of POTS.  Indeed, BP can drop, raise, or stay the same for a POTS patient when on upright tilt or in standing position.  To verify that no particular pattern of change in BP is diagnostic of POTS, please see the link I provided above to the POTS diagnostic criteria.  This is a very common misconception that many doctors (and thus patients) have.  

If anyone needs more discussion/explanation on this, I'd be happy to answer questions about it.  There are many excellent references cited in the aforementioned link (health page) which provide thorough information on diagnosis and treatment of POTS, disorders of orthostatic intolerance, and other dysautonomias for those who have access to medical journals and textbooks and are interested in further reading on these subjects.

[LowMac]

It appears you are right, in-that the type of orthostatic hypotension that occurs immediately upon standing, is not part of the diagnostic criteria as reflected in the statement below, found on the "POTS Place" website:

(Under the heading "Symptoms" - POTS)
"Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)"

It sounds like to me, that they are saying that it is commonly a symptom in POTS patients but may not be so in all of them...interesting!

Thanks for the clarification.

[Heiferly]

Yep, here's a more comprehensive statement from Grubb on the subject from our healthpage that I linked above which details the POTS diagnostic criteria:



" ... It should be noted that many patients with orthostatic intolerance due to POTS will not demonstrate orthostatic hypotension (defined as fall of >20/10 mm Hg on standing). Instead, they may display no change, a small decline, or even a modest increase in blood pressure."  



-Grubb, Blair P.  Postural Tachycardia Syndrome. Circulation 2008;117;2814-2817  DOI: 10.1161/CIRCULATIONAHA.107.761643  Downloaded from circ.ahajournals.org by on April 2, 2009

-http://circ.ahajournals.org/cgi/content/full/117/21/2814


We have quite a few POTSies here who have BP increase when upright.  Some doctors even exclude a diagnosis of POTS if the patient meets the cutoff for orthostatic hypotension diagnosis (i.e., if the drop in blood pressure is greater than 20/10 mmHg).  

Hopefully these diagnostic categories will get more clear in the future as the different causes for POTS get teased out over time with continued research.