Discussions By Condition: I cannot get a diagnosis.

Need help for my 17 yr old daughter

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Momof4
  • September 26, 2007
  • 02:44 PM

Hi. Here goes...When my exceptionally healthy daughter turned 15 all '***l' broke loose and she has been sick ever since. The normal period that she had for 6 months became extremely heavy and didn't stop for 16 days and she was put on Ovcon35 to stop her period. I was told she was experiencing this sudden change because she had grown so much and her ovaries couldn't keep up. OK - well she was extremely anemic (7.5) and within 2 months came down with Mono. They kept her on the pill for several months (June - Dec.) and when they took her off of it she started getting headaches. I asked if this was related to stopping the pill and was told no. They started her on propananol. It did help with the headaches most of the time. Her periods were ok for a short time but then started to become a problem again - so back on the Ovcon35. Throughout all of this she has dealt with chronic fatigue, loss of appetite, when she does eat she experiences abdominal pain. These symptoms seem to get better but over the last 2-3 months they have come back with a vengence. This summer a rash on her face appeared that has not gone away - and she is extremely sensitive to the sun - she will get a horrible rash on her body from the sun. The fatigue is back - she will sleep for 8 hours and wake up and still be exhausted. She has lost 6 lbs in less than a month and has stomach pains when she eats. She generally feels horrible most of the time. She has had a headeache every day for the last 3+ weeks. So - they just tested her for Lupus and thyroid disease and it came back negative. They want to start her on a different birth control pill. I have had it. My daughter is SICK and has been for 2 years and I want to find out WHY. I want to add that my daughter is an incredible athlete and is very active. She is being recruited to play basketball in college. This is what makes it so sad - not many people in her life realize how sick this poor girl feels most of the time because she is so talented. Autoimmune disease is in my family - but I am adopted so I do not know much else. If there is any one out there who can help me, please let me know. Sorry for the long post.
So overview of the symptoms: chronic fatigue, irregular and heavy period, rash on face, sensitivity to sun, weight loss, loss of appetite, abdominal pain after eating, daily headaches, occasional nausea THANKS

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3 Replies:

  • Sounds a lot like endometriosis, which doctors looooove treating with the pill, without even bothering to get a true diagnosis first. I found it exacerbated mine, with increasing symptoms every time I took a break (like your daughter developing headaches). Do look this up and see if you think it's a good fit. I have been able to keep a handle on mine with *natural* progesterone cream, however whenever I take a break from that (becoz I no longer feel sick), the symptoms are back fast and furiously within a month - I don't take breaks anymore. I prefer it to birth control pills, because the side effects are nominal (occasional achy breasts, vivid dreams - when these occur I slow down from applying it twice a day to once a day) and because it's exactly the same hormone our bodies make - not like progestin (which doctors like cause they can Rx it) which is made form female horses' urine. Btw, progestin is in birth control pills too. Cutting out wheat may also help a great deal - I find I have a lot more IBS type symptoms after eating pasta and whole wheat grains if it is during the 2 weeks after I ovulate - rye doesnt seem to bother me. I'm not unusual in this - endo does seem to have some autoimmune components and may be a cousin or symptom of celiac disease. Have her get a vaginal ultrasound just to make sure nothing else is going on - it should be clear, as endo looks like normal tissue, and is only diagnosed with laparoscopy. I would recommend researching endo to see if you think it is a good fit and exploring this as a possibility. It is incredibly common and very underdiagnosed - the average diagnosis takes 9 years from onset of symptoms. It's also a good idea to get on top of it while she's young as it can cause problems with conception. You can have kids tho - I had 2 with no major issues.
    Anonymous 42,789 Replies
    • September 26, 2007
    • 03:10 PM
    • 0
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  • The heavy periods could be endometriosis, but what concerns me here is the weight loss and fatigue. sounds like an adrenal problem. go get her cortisol levels tested and don't wait for them to find it. Just say I want a cortisol check done. I think the doc's have misdiagnosed her totally. Another concern is why they checked lupus and thyroid issues which is great. But, if the gyne says she's growing at a rapid time the endo crinologist should also checked her growth hormones. Maybe acromegly?? Did you see an endo for the lupus and thyroid or just a regular doctor. Don't get fed up yet sounds like you just need to get a doctor who can close the case here. I would definately get a cortisol check done and make sure it's in 7 to9 am or 3 to 5 pm. I admire your willingness to pursue whats going on with her. Don't stop until you get some answers. In the mean time keep us all posted. I'm curious to know the results.What kind of rash are you talking about. Some medications are sensitive to sunlight, so perhaps you can look up her birthcontrol pills and see if sensitivity to sun exposure could be a factor. Does she have a tan??? Or dark circles under her eyes.? What is her blood pressure?? Gastro problems are also correlated with cortisol. Becareful here, I knew of a boy that was being treated for gastric problems and was misdiagnosed and had addisons and he didn't make it. Not trying to scare you i'm just suggesting your daughter has been misdiagnosed. May I ask what kind of autoimmune run in your family??? MS? Lupus? Thyroid? Graves?? Adrenal issues?? Get the adrenals checked out. Does she ever shake and get cold?? Does she have a lack of appetite and lose weight quickly??? Headaches-there's a clue. Can you check her blood sugars also?? Maybe someone in the family might have a meter you can use. I wish you the best, prayers your way to find the source of the problem. Good luck keep us posted. Does she get irritated easily,moody?? Unable to handle stressful situations even if it's physical like running??
    Anonymous 42,789 Replies
    • September 26, 2007
    • 03:46 PM
    • 0
    Flag this Response
  • Sounds a lot like endometriosis, which doctors looooove treating with the pill, without even bothering to get a true diagnosis first. I found it exacerbated mine, with increasing symptoms every time I took a break (like your daughter developing headaches). Do look this up and see if you think it's a good fit. I have been able to keep a handle on mine with *natural* progesterone cream, however whenever I take a break from that (becoz I no longer feel sick), the symptoms are back fast and furiously within a month - I don't take breaks anymore. I prefer it to birth control pills, because the side effects are nominal (occasional achy breasts, vivid dreams - when these occur I slow down from applying it twice a day to once a day) and because it's exactly the same hormone our bodies make - not like progestin (which doctors like cause they can Rx it) which is made form female horses' urine. Btw, progestin is in birth control pills too. Cutting out wheat may also help a great deal - I find I have a lot more IBS type symptoms after eating pasta and whole wheat grains if it is during the 2 weeks after I ovulate - rye doesnt seem to bother me. I'm not unusual in this - endo does seem to have some autoimmune components and may be a cousin or symptom of celiac disease. Have her get a vaginal ultrasound just to make sure nothing else is going on - it should be clear, as endo looks like normal tissue, and is only diagnosed with laparoscopy. I would recommend researching endo to see if you think it is a good fit and exploring this as a possibility. It is incredibly common and very underdiagnosed - the average diagnosis takes 9 years from onset of symptoms. It's also a good idea to get on top of it while she's young as it can cause problems with conception. You can have kids tho - I had 2 with no major issues. I agree it could be endo. It also sounds like she has some allergic reactions and possible food intolerances going on. I agree she needs a vaginal ultrasound to rule out ovarian cysts - which can also cause her symptoms, especially bloating and lower abdominal pain. Please look into a form of treatment called NAET. Also consider acupuncture - it is VERY helpful for endometriosis and regulating the menstrual cycle. Consider her rash and sun sensitivity could be due to the pill. Research ALL side effects of meds on www.drugs.com as most doctors just don't address this effectively. Also, she could have an allergic reaction to ingredients found in sunscreens - this may improve if she switches brands and tries one from a health food store. Mono can take a long time to heal, and Epstein Barr virus will contribute to chronic fatigue. Please try acupuncture or NAET for this - most allopathic treatments for CFIDS and other autoimmune diseases are just not very helpful IMO. Best wishesDOM
    acuann 3,080 Replies
    • September 26, 2007
    • 07:05 PM
    • 0
    Flag this Response
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