Discussions By Condition: I cannot get a diagnosis.

Got the doctors baffled

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: alsoran
  • April 2, 2007
  • 09:14 PM

I've been battling a complicated list of symptoms for a few months.

Panic attacks (been to the ER a few times)
Anxiety attacks
Blood pressure spikes (during the panic attacks as well)
Extreme fatigue
Nervousness
Lightheadedness
Dizzy spells
Vision problems
Pressure in head
Acid reflux
Ulcers
Gas
Weakness
Hypoglycemic episodes
Confusion
Hypersensitivity
Inablitly to handle stress
Not able to focus
Hair loss (LOTS)
Acne

It seems as though the doctors don't know where to go with me. I've been tested and tested and tested. Here's the results so far:

Gallbladder is functioning @ 10%, no gallstones
Abnormally low cortisol levels
Sinus infection since early February
Elevated liver enzymes
Normal (but on the high end) DHEA
Had a CAT scan of stomach to check adrenal-came back normal
Had a MRI showed sinus infection
Blood tests run including thyroid and kidneys were fine
EKG's run during panic attacks were fine
My "good" cholesterol is low, 29 (LDL was 94)

The only thing we've accomplished so far is to schedule an appointment with a surgeon for gallbladder surgery.

Any help is appreciated!

Thanks in advance!

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18 Replies:

  • Just a few other details to add: I'm a female, 29. I have been taking Ativan for 2 months for the panic attacks. I've also been taking Depo shots for a few years as well.
    alsoran 6 Replies Flag this Response
  • Hi Alsoran,I'm absolutely stunned to not see any tests for thyroid function. You need to get that done right away. Hyperthyroid would explain all, or nearly all of the symptoms, including the hair problem. And it is a simple blood test.Years ago I had a problem that no one could find what it was. LOTS of tests. One day in the doctor's office, taking yet more blood, I looked at him and said that if he keeps taking blood, at least they'll be able to find that I had become anemic.Anyway, check your thyroid levels. And when they come out hyperthyroid, give your doctors a smack for me.Best,Shulamit
    Anonymous 42789 Replies Flag this Response
  • Hi Alsoran,Sorry about that...didn't see that thyroid was normal in the first post.I see that your cortisol level is low. Have you looked at Addison's disease? See: http://health.yahoo.com/ency/healthwise/hw65865It would be an unusual presentation, but sometimes unusual presentations are exactly what mess up the docs. Can also mean you have more than one thing going at the same time. And since you know about the gall bladder, perhaps you are dealing with Addison's and gall bladder, and hopefully that would be it.Are you taking meds to fix the low cortisol level? And what is a "Depo shot"?Have you seen an endocrinologist? If not, that would be my first suggestion for where to turn next.Any other history you didn't mention? Yours or family with anything similar? And in your MRI, did they look at your thyroid? You can have good thyroid function and still have something growing on it, messing with you.Looking forward to your response...Shula
    Anonymous 42789 Replies Flag this Response
  • What is your calcium level...sounds like it could be hyperparathyroidism if your calcium is elevated and phosphorus is low. Attirbutes to majority of your symptoms.
    Anonymous 42789 Replies Flag this Response
  • Why are you taking a benzodiazepine for panic disorder? They are highly addictive, have siginficant withdrawl symptoms, and are generally regarded as useless among many psychologists. If you must take medication as oppose to trying cognative behavioural modifications, consider switching to an SSRI like Paxil or Prozac. Many of your symptoms might be BECAUSE of the Ativan, you know. It is a fast acting tranquilizer and can cause a significant number of the symptoms you are reporting. Talk to your doctor about weaning off the benzodiazepine and introducing an SSRI.
    Anonymous 42789 Replies Flag this Response
  • Thanks for the response! Yes, I have been looking at Addison's as a possibility and I think that there is more than one thing going on as well. I'm not taking anything for the cortisol. When I mentioned my results to my doctor he requested a CAT scan to check my adrenal gland and the nurse called today to let me know that it turned out normal, so I'm not sure where that leaves me. I haven't seen an endocrinologist. I've been heavily considering it since getting my cortisol test results back which I just got the hard copy of today. It was a test I had done myself through bodybalance. None of the doctors considered it and I had stumbled across cortisol while searching out my symptoms so I went ahead and ordered it myself for fear of sounding like a hypochondriac in the doc's office. My 8 a.m. was 0.18 normal range 0.27-2.06 and my 12 a.m. was I don't recall whether the checked out my thyroid when they did the MRI. It was never mentioned best I can recall. No other history that I can think of right off the bat. Depo Prevara is the birth control shot taken every 3 months. Again thanks!
    alsoran 6 Replies Flag this Response
  • Depo is causing your hair loss - I will guarantee this. Please visit www.rxlist.com or www.drugs.com and look up the side effects to Depo - you are showing very many symptoms that are listed as side effects! In addition to dizziness, depression, insomnia, nervousness, acne, Gastrointestinal upsets, jaundice, hot flashes, chest pain, pelvic pain and I can go on with this: in addition to these side effects Depo Provera can cause extreme bone loss, especially if you have been taking this for over 2-3 years. The good news is that this is usually reversible after stopping the depo. Please look into this! Doctors don't ever get the link between certain meds (especially birth control) and their side effects. Hormonal birth control methods can cause a lot of problems in some women. Please, consider another form of birth control that is without hormones. I really feel this is what is wrong with you or at least a big part of what is happening in your body. Due to the potent hormones in the depo, you may have candida overload (sinus problems, blood sugar issues, and fatique, foggy brain). Candida can become out of balance due to hormonal changes. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Well, I'm definitely not going to take Depo anymore. The more I read about it the more it frightens me. Also with my hair, not only am I losing it but it's becoming a lot more dry and brittle than it's ever been. :mad: The candida is interesting. I'll read up some more on it tonight. Thanks so much for your help!
    alsoran 6 Replies Flag this Response
  • What is your calcium level...sounds like it could be hyperparathyroidism if your calcium is elevated and phosphorus is low. Attirbutes to majority of your symptoms. I'm not certain. I'll check into that and see if it was tested. Thanks!
    alsoran 6 Replies Flag this Response
  • Why are you taking a benzodiazepine for panic disorder? They think that it's not a panic disorder per se. They are thinking that there is something "in there" that isn't behavioral that is triggering these attacks. The best guess they have right now is that since I haven't had any pain with my gallbladder with it functioning at 10% that somehow my body is converting the pain into stress/anxiety. The Ativan is pretty much used to control my blood pressure during the attacks. It's the kind taken under the tongue so that it will level out my bp quickly.
    alsoran 6 Replies Flag this Response
  • Hmm...that sounds like bad medicine to me. Doctors shouldn't be perscribing tranquilizers unless the patient needs them. If you are having panic attacks for reasons OTHER than an anxiety disorder (which is certainly possible) then they need to be focusing on THAT issue and doing it promptly. Having you take Ativan for extended periods of time is irresponsible and in my opinion, downright unprofessional. You mention taking it for blood pressure- do you take it reguarly (as in daily) or just whenever you have an attack? Why don't they feel a beta blocker isn't more useful? They can also have benefits for anxiety related symptoms actually. Have doctors done any kind of heart-related exams (EKG, ECG, etc) just to rule out that possibility?If you only have the "panic" attacks every X days, and only take the Ativan when you have the attacks, then it's not so bad. But if the doctors have you taking it like a regular medication, then you might seriously want to consult with a different one and get their input.
    Anonymous 42789 Replies Flag this Response
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  • Hi, Look into Lyme disease and its coinfections, much of what you report are symptoms. Lyme also affects the adrenals and much more when left undx'd & untreated . Heres a great site lymenet.org. Hope you can feel better soon.
    Anonymous 42789 Replies Flag this Response
  • What ever you do stop taking the Depo Now! I was on Depo 6 years ago and I swear that it almost killed me. I am now 25 years old and very possibly might never have any children because of it.I had spotting the entire time I was on it. They kept giving me extra shots saying that my body must just needed more. My hair started to fall out, I gained 40 pounds in 6 months despite the fact that I couldn't eat due to severe acid reflux. ( I lived off a glass of milk a day for more than a month... and still put the pounds on!) I went to more doctors in that year then I have been to in my life and they just kept giving me more shots and saying that there was no possible way that it could be the depo. Finally I decided enough is enough went to another new OBGYN and quit taking the depo. The weight started coming off right away but it was another 15 months before I finally stopped spotting. My OBGYN told me at the time that if I ever have children it will be after years of fertility drugs and trying and even then it will be a stretch. I'm not sure I fully believe that ( I don't have alot of trust in doctors anymore... sorry I know there are some great ones) but I would not risk it if I were you. When you go off the depo... and I really hope you do, be prepared that it does take a really long time to get it out of your system. You will however start to feel a lot better right away, and if I remember correctly my hair started to look alot better after just a month or two . Good luck I really hope this helps you and that you will be on the road to recovery in no time
    Anonymous 42789 Replies Flag this Response
  • I take the Ativan when I have attacks, not to prevent my BP from going up. My BP is fine unless I'm having an attack...then it skyrockets, I've checked it at home during one and seen it at 185/130. I'm pretty certain it's gotten higher than that during some of them. The problem is we are trying to figure out where these attacks are coming from. We know my gallbladder is shot and that I'm not having any pain. There was a suggestion that it's registering as stress instead of pain so that could be causing my sudden attacks and BP spikes. I have been tried on BP pills-Benicar, Zestoretic, Metropolol, Lisnopril and (sorry if the spelling is off) and with all of them my BP would bottom out around 70/60 and I'd feel like I was going to pass out and broke out into cold sweats. The game plan so far is to get the gallbladder out and see if that helps. The surgeon the doctor wants me to use is out of town until the 11th so hopefully it won't be too much longer. I've had 2 EKG's and a chest x-ray that all turned out fine.
    alsoran 6 Replies Flag this Response
  • Girls...just a note re: Depo-provera...If you are on it or thinking of going on it...Know that it depletes your Calcium while you are on it and you should be taking daily Calcium to replace what is being lost. My friend was on it for years and now has the bone structure(strength) of a 70 year old. Birth control can really screw you up in many ways...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Alsoran...If you are having your gall bladder out, ask to have it done laproscopic. They use a laser. had mine out in 1994(laser) and it was the easiest surgery I ever had. Recovery was a breeze...Best of luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • You didn't say whether you have addressed the sinus infection. A chronic sinus infection can cause many of the symptoms listed. I had one and it took forever to get the diagnosis. My extreme fatigue (I couldn't even drive for more than 30 minutes without stopping to take a nap) and other symptoms kept pointing to hypothyroidism but my thyroid levels were fine. Once they cleared up the infection it was like I was reborn. On the gallbladder surgery--make sure you know what you are getting into. Research it online. I know "everybody" has their gallbladder removed, but 10% of people who do get diarreha and/or nausea when they eat fatty foods after removal (EVEN IF THEY NEVER HAD PROBLEMS BEFORE!!!) and studies show that cholesterol levels in women with their gallbladders are markedly less than those without it. I am not saying don't do it, but understand you are removing an organ from your body, not just a worthless piece of tissue. Be informed on both sides.
    emsbabydoll 73 Replies Flag this Response
  • Stop with the Depo.... DOM is correct.I am going through almost the same issues. Mine is partly from using the Nuva Ring and not getting a period the past 3 years. I had a bad experience 15 years ago w/ Depo. I went from 110 lbs (size 4) to 140 lbs (size 10) in less than 2 months. It took me a year and numerous rounds of hormones to get my period back and I began to have issues w/ depression from it.Recently, (since January 06) my hair had been falling out, I have no energy, I sleep all the time and am again gaining weight. I have many more I wont detail you with.Step one - go off all BC for a full 6 months. Your body needs to have a period and you need to be regular. If your gyno wont listen to you, find another. If you need to use a condom for bc for a while. Sucks for our guys, but we have to make sacrifices with our bodies, so they can handle it for a while.Step two - take your temperature four times a day 7,11,4 & 7. Record your temps. Mine were and are still are about 97.5.Step three - find a doctor that will allow you to do saliva testing for your thyroid, cortisol, dhea and hormones. The blood tests are not accurate - mine kept coming back in the "normal" range. Until I did saliva testing and found out my cortisol levels were non existant. You can find more info on saliva testing at www.aboutthyroid.com and www.diagnostechs.com - these are excellent websites. Look into Isocort for your cortisol. Look it up on the web. It is a natural adrenal complex that is supposed to regulate your cortisol functions. I have been on them for about a month and they seem to be making a difference.Step four - do not believe everything a doctor tells you. I have been through numerous ones and have an appt today with one that seems to be helping me. He's on the right track.Dont keep going to doctors that are pill pushers. Get all the crap out of your body and try to start fresh. Please feel free to email me - im going through almost the same thing (minus the panic) and am having a hard time getting a handle on it. My problem now is I am constantly hungry - I am famished all the time. Its freaking me out.
    SHERWRIGHT 1 Replies Flag this Response
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