Discussions By Condition: I cannot get a diagnosis.

i am 21 and have had to put my life on hold.

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: baltais
  • January 19, 2007
  • 09:55 PM

Hi,

I am a 21 year old female who used to be extremely athletic and ate meticulously healthy. I've had to stop University and am currently feeling helpless and in search of an answer. It all began a year and a half ago. One week I just started having brief episodes of vertigo. I've had labrinthytus twice before so I just thought it was that. A week went by, two weeks, and then it was full blown 24/7 vertigo, where i felt like i was on a boat just rocking and the earth was always moving beneath my feet (it has never made me physically ill though). I went to see 2 ENT specialists, physiotherapists (got treated for benign positional vertigo), and had an MRI done and all inner ear tests possible - everything came back as normal. I was so frustrated, but i was told it was non-life threatening, whatever was causing this. so I overcame it and changed my life around it, and learned to cope. then three months ago more symptoms started up. now i am completely and utterly exhausted, i had extreme weakness despite my extreme level of fitness, I have hand tremors, my knees shake when i go down the stairs, I have difficulty in sleeping and even after sleeping 12 hours i still feel like i could go back to bed. so there i was again, going back to the same doctors and this time they were thinking thatall these symptoms could be related to a longstanding undiagnosed thyroid problem, especially since my grandmother had thyroid problems at my age. the more i researched hypothyroidism the more it made sense to me -- i've had so many of these symptoms, all of which i just learned to live with like sleep apnea, cold hands/feet (purple), excessive sweating, amenorrhea, reoccuring stomach problems (diagnosed as esphageal reflux syndrome, aches in my shoulders and neck, etc. I went to see a chinese medicine practioner and he also noted that my body and energy levels were in fact extremely well, but there was something definately stopping in and my body has been dealing with this condition for some time. it all made way too much since, especially since my grandmother at my age had to have thyroid surgery because she had a goiter. I've had just a regular blood test done, and an extensive thyroid test, and everything has come back as "normal." I am so frustrated and desperate because I have all the symptoms of hypothyroidism, yet the tests say i don't. I've read cases of this happening to some people and I was hoping there could be someone out there with anything -- ANY INFORMATION. any information is better than no information. I'm so desperate right now and at my wits end!

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14 Replies:

  • You said you had extensive thyroid tests & they all came back normal. What specific tests did they do on you?
    Anonymous 42789 Replies
    • January 19, 2007
    • 10:56 PM
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  • Thanks for replying so soon! I believe the thyroid test included TSH, T3, and T4 levels. I'm actually getting it mailed to me and should be recieving it later next week. My doctor keeps insuring that these tests are completely accurate and keeps diagnosing me with depression. I find it hard to believe how one minute I'm extremely active and a part-time student having the time of my life, and then over a few days my energy is just sucked out of me until i can barely get outta bed. Then another doctor says that maybe my body just can't handle viruses and that the vertigo and this exhaustion are just the result of them, and now i'm experiencing a "chronic fatigue-like state." I just don't know what to believe anymore and just hope to find some sort of suggestion of what to do next, or if anyone else knows of anyone or has experienced anything similar!
    baltais 4 Replies
    • January 20, 2007
    • 01:09 AM
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  • I know it's a long shot, but have you considered Multiple Sclerosis? My dad has it and that's kind of how he started off. Good luck :)
    Anonymous 42789 Replies
    • January 20, 2007
    • 01:39 AM
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  • Maybe your TSH is erratic. To provide a baseline for comparison, you need to have it checked once a month for a period of time to be sure it stays relatively constant. There are other glands that cause problems, too. Pituitary and adrenal to list a couple. I've been having problems with my thyroid but when I had the TSH checked it was in the normal range. I read that it doesn't have to be out of the range to cause a problem. Good luck.
    Anonymous 42789 Replies
    • January 20, 2007
    • 06:09 AM
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  • Thanks for replying so soon! I believe the thyroid test included TSH, T3, and T4 levels. I'm actually getting it mailed to me and should be recieving it later next week. My doctor keeps insuring that these tests are completely accurate and keeps diagnosing me with depression. I find it hard to believe how one minute I'm extremely active and a part-time student having the time of my life, and then over a few days my energy is just sucked out of me until i can barely get outta bed. Then another doctor says that maybe my body just can't handle viruses and that the vertigo and this exhaustion are just the result of them, and now i'm experiencing a "chronic fatigue-like state." I just don't know what to believe anymore and just hope to find some sort of suggestion of what to do next, or if anyone else knows of anyone or has experienced anything similar! Sorry to hear about your problems , I am 27, mother of 2 young boys and I am going through extensive testing myself, my doctor thinks I may have graves disease (auto-immune hyperthyroid), and also being tested for Addison's disease (adrenal glands), so I am suffering some of those problems myself ( shakes, tremors, visual problems, extreme fatigue, constant headaches ) aswell as a few tummy problems, so my life is kind of on hold too , but I know I have to keep going for the sake of my boys, they are my prioity. When you get your test results from your thyroid sent, make sure they tested your FREE T3 and FREE T4 (ft3 , ft4) and thyroid antibodies (sometimes called auto-antibodies). Sometimes thyroid problems don't show up on your regular T3 , T4 and TSH tests. If these have not been done (ft3, ft4, antibodies), I suggest you ask to have these tests done aswell. Hope you get a diagnosis soon, I know what It's like to suffer for so long without knowing whats wrong and being treated like you're a hypocondriac. But hang in there and know you are not alone. Kitty K (>"<)
    kitty k 31 Replies
    • January 20, 2007
    • 10:32 AM
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  • I did have an MRI to rule out MS, and it came up clear which was a relief. I asked my doctor if I could see an endocrinologist and he said that would be a waste of time and unnecessary because all my thyroid tests came back as normal. I thought that maybe it would be a good idea just to check other hormones and get a second opinion, but he was reluctant too. I guess I just have to keep searching for a doctor who will. thanks for all the feedback, i'm new to this online conferencing stuff and wish I had known about it sooner. my heart is with everyone, and i wish them the best of luck in their search for a diagnosis.
    baltais 4 Replies
    • January 20, 2007
    • 03:59 PM
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  • Do you take birth control pills? Are you taking any other meds?If so, then consider stopping and using a non hormonal form of birth control. This can cause lots of problems in some women. A good thing to take to help your thyroid function is to take sea vegetables like kelp, dulse, spirulina, etc. Find a good quality supplement at the healthfood store. Also, I recommend anyone who is have these sorts of symptoms and are testing negative in their diagnostics to get CHECKED FOR CANDIDA. please visit www.wholeapproach.com and www.candidasupport.org. for more info on candida overload - this can cause a myriad of seemingly different symptoms. Please look into this - most doctors don't address this problem and I see it very often in my clinic. Hope this helps.Doctor of Oriental Medicine
    acuann 3080 Replies
    • January 20, 2007
    • 04:08 PM
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  • I know what you are going through. My husband was 39 years old and healthy as could be when he suddenly experienced a multitude of diffuse symptoms that totally knocked him down. Doctors wrote it off as a "virus". 4 years later he is completely disabled and unable to leave the house much less work or function normally. He has been tested for everything under the sun but none of his tests come back positive.I would make a few recommendations;1) find a doctor who will listen to you and not diagnose you as depressed - not that you probably aren't depressed. Who wouldn't be? But that's not the cause of the problem. Keep pursuing specialists who you think may help.2) keep a journal of what is happening to you. It will help you down the road as you put the pieces together and try to maintain a timeline of events.3) You may want to consider a spinal tap. Research the procedure first then make a decision. A spinal tap will often yield results that bloodwork doesn't.4) Is it possible that you have Lyme disease? Your symptoms sound similar to a friend of mine who had Lyme.Good luck in your search. You are not alone.
    Anonymous 42789 Replies
    • January 20, 2007
    • 05:10 PM
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  • I used to take oral contraceptives but stopped taking them to rule that out when I had the initial vertigo symptoms. I looked up the information about candida and it talked about having recurrent urinary infections and others which I've never experienced once. so i don't know if that is at all possible but i will look into it further. maybe i should try another detox diet to see if that improves the symptoms, its worth a shot. thanks for all the help!
    baltais 4 Replies
    • January 20, 2007
    • 06:29 PM
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  • The candida diet happens to avoid all common causes of food allergy and intolerence. You said you have excessive sweating, fatigue, and chronic digestive problems. Those were the big 3 clues that led me to go on a gluten-free diet. Unfortunately, I didn't figure it out until after college was over :( I definately missed out on a lot but now that I now what not to eat, I feel great.With a wheat intolerence its called Celiac's disease. It can also be caused by soy, milk, corn, salicilyates (tomato, onion, peppers), or a ton of other foods depending on genetic pre-disposition and your body's personal experience with the food (sometimes virii and bacteria "hitch" on to certain foods to gain access to your bloodstream and this can cause your body to reject that food forever - especially if it happens during infancy).Doctors rarely look at it because it sounds like Asian medicine or some new-age hippy fad, but the Mayo Clinic and Columbia Med center are looking at it more lately.
    Azaral 152 Replies
    • January 20, 2007
    • 09:05 PM
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  • Hi,I experienced vertigo on and off for two years. This might be oversimplifying things a bit, but I would consider stress as some sort of factor. I wasn't able to equate the two until looking back on the situation, but the vertigo usually correlated with times of heavy stress. I don't know if this might apply to you, but I eliminated the stress which took care of the vertigo.Matt
    Anonymous 42789 Replies
    • January 20, 2007
    • 11:13 PM
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  • Thank you so much for all the feedback everyone, I appreciate is so much! :)As for the stress, I always have noted that in times of stress it does get worse, but so does any other ailment i've had. In the beginning I definately thought it was just that because of school pressures, work, relationships, etc. but when I would have "vacations" (ie working in a provincial park for four months) it still persisted and was always present, but was not as aggressive.
    baltais 4 Replies
    • January 21, 2007
    • 04:12 PM
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  • Well, good luck to you. I didn't mention this before, but I also had chronic fatigue along with the vertigo as well as some of the other symptoms you mentioned. I thought I had something serious as these symptoms persisted for months at a time, and like you, the doctors said I was normal. In my case, I had to make MAJOR lifestyle changes before I started feeling better. I was not able to fool myself by taking a respite, even though my symptoms did improve slightly during those times. Basically, my entire life had gone down a road I was no longer comfortable with but it happnened so gradually over a number of years that I wasn't able to realize it at the time. I too had doctors suggest depression. I sincerely hope you can conquer this. I know what you are feeling even if the causes of my symptoms were different. Matt P.S. I know this sounds nuts, but I would trying plugging your ears when you shower. This seemed to help my vertigo even though doctors said it wouldn't.
    Anonymous 42789 Replies
    • January 21, 2007
    • 07:02 PM
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  • If you are still out there, did you get the results from your thyroid testing? I mean actual numbers. The reference range most labs report has been changed for TSH. The new range as of 2003 according to the Association of Clinical Endocrinologists is 0.3-3.0. I have had long standing vertigo and all the doctors told me my TSH was normal based on the old lab range. I was just diagnosed by an endocrinologist with Hashimoto's hypothyroisim based on mildly elevated TSH and positive thyroid antibodies.
    Anonymous 42789 Replies
    • October 24, 2007
    • 02:38 PM
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