Discussions By Condition: I cannot get a diagnosis.

AT a Loss...

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • April 30, 2008
  • 08:49 PM

For the past 5-6 months, I have been dealing with a string of symptoms and absolutely NO help from doctors. It began with a persistent nausea with vomitting and extreme fatigue. I was (and still am) experiencing sweats, tremors, bowel irregularities, random menstrual bleeding, flushing, palpitations, fingernail changes (no half-moon anymore and deep red lines with peeling at the tips) and weight loss. I have been trying to gain weight the past two months, only to find that I have lost another eight pounds. Initially, I guessed my thyroid may be the culprit based upon my symptoms and the fact that my mother had thyroid cancer precisely at my age (22). When tested back in December, my TSH was high (around 4.5) but my doctor's range for normal goes to 5.0 and he says this is the level which the machines are callibrated for and that 4.5 is not high. Is he right about this? I was quite upset when I left this doctor, as he told me that he was "unable" to help me any further, nothing was wrong and maybe counseling would help. What nerve! I'm pretty certain that I know when I am and am not sick, but anyways...Even so, I have been trying counseling for the heck of it...turns out I'm pretty healthy, mentally.

... I really have a strong intuition about my thyroid at this point.
On year ago, I went through a very similar experience with my gallbladder (the doctors even put labels on me back then including psychosomatic and hypochondriac, for which they have all since apologized). Currently, as far as bloodwork, I've had just about everything tested and come back negative. I have had MRI's, Pap smear, ultrasound, endoscopy (which revealed some gastritis and GERD), 24-hour urine sample...all "within normal range".
This whole process is making me feel crazy. I KNOW that there is something going on in my body...I know my body.

Has anyone had a similar experience? What can you say to doctors who won't listen? What should I do? I'm so exhausted by all of this, physically and mentally. I just want to feel OK, I do not enjoy going to the doctor or going through all of their tests. I am at a complete loss. HELP

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6 Replies:

  • First of all, I am so sorry to hear what you are going through (both physically and dealing with not being taken seriously). I've been in a similar position as you the past couple years in regards to doctors not taking me seriously and telling me that I'm just being hysterical...which is a double edge sword because then I get more frustrated and seem "more hysterical" in there eyes. I'm close in age to you (24) and apparently if you are a young woman the only potential problem you could possibly have is in your head! Okay I'm done ranting... A few thoughts:1. In regards to your thyroid, 4.5 seems high. I don't know too much about normal levels, but from what I've read about other people's experiences you would likely be symptomatic at that level. You mentioned you had an ultrasound, was this of your thyroid? Have you had a thyroid anti-body test done?2. Your rapid weight loss is definitely a significant symptom and could be the cause behind your irregular menstrual cycle.3. What you wrote about your nails concerns me...although it doesn't seem like it, your nail health actually reveals a lot about your overall health and can help pinpoint the problem. Not to scare you, but has anyone ever tested for endocarditis?4. Lastly, did you start any medications shortly before your symptoms presented themselves (0-6 months prior to onset)? Some meds (such as birth control) can cause serious side effects in some individuals. Best of luck in dealing with everything. If you are not happy with your doctor and are able to switch you may want to. I just kept jumping around until I eventually found one that I was happy with. After all, they work for you, so you don't want to give your business to someone who doesn't take you seriously. Just keep in mind that you are not alone in your frustrations. I'm curious as to what the magic age is that we begin to be taken seriously about our health concerns?
    GD2005 61 Replies Flag this Response
  • Your doctor is WRONG about the thryoid levels for TSH. The American Association of Clinicial Endocrinologist now recommend a TSH between 0.3 and 2.5 and anything outside that deserving of treatment. Go to a specialist, endocrinologist, research thryoid THOROUGHLY, check out Mary Shomon's site on thryoid (she herself a thryoid patient and patient advocate) and you will see you many symptoms listed there. There is also a forum and a great bunch of ladies with great advice....I used them a lot when I was first diagnosed. Do it soon as the longer the thryoid goes without treatment the longer it may take to recover. THe thryoid effects EVERY cell in your body...that is how important this little gland is.... Be sure you have FT4, FT3 TSH and the antibodies for Hashimotos and sounds like you might want to get an ultrasound of the thryoid and other tests....you are especially likely since you have a family history. Thryod is treatable and you can get well. Good luck. Joan
    Joan5555 316 Replies Flag this Response
  • bowel irregularities, irritable bowel syndrome? (that can be part of many other disorders)..............chronic fatigue syndrome (also called chronic fatigue immunity dysfunction syndrome) can affect the whole body including the hormones and cause a ton of symptoms including those you said..http://wwcoco.com/cfids/bernesx.html Is your fatigue worst post exertionally? Do you also have memory issues or confusion going on? (IF you have both these things too.. consider CFIDS and try to find a doctor or specialist who also specialises in this too) (There are certain tests which can help point towards a CFS diagnoses too).
    taniaaust1 2267 Replies Flag this Response
  • Have you been checked for intestinal parasites? the symptoms are similar to those you describe:http://www.aafp.org/afp/20040301/1161.html
    Anonymous 42789 Replies Flag this Response
  • Thank you so much for all of the helpful advice! And words of support, it is such a relief to hear that there are others who can relate. The words "you can feel better" just made my day. I think my next step is to see an endocrinologist/rheumatologist who knows a little more about the thyroid and get this TSH level figured out ASAP. I agree that I need to find a doctor who will work for me and take me seriously. I will use all of this information so that I can go in prepared to ask the right questions and, ultimately, find the right doctor. Thank you all again for your help.
    Anonymous 42789 Replies Flag this Response
  • Have they ultra-sounded your thyroid gland or checked thyroid antibodies yet? My thyroiditis went undetected for years and was only picked up by antibodies (and then confirmed by the ultrasound). Along the way, my doctors swore up and down that my thyroid gland was okay and that I was just nuts for thinking I was ill. In fact, I was reassured that my thyroid gland was happy and healthy 6 times, but I kept having this nagging suspicion that something was not quite right, which they encouraged me to discuss with a therapist...I'm a bit tainted by my own experience, but I'd say to trust that nagging feeling that something's wrong with your body, and say no thank you to the counseling (I wish I had!)
    Anonymous 42789 Replies Flag this Response
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