Discussions By Condition: I cannot get a diagnosis.

Finally!

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • August 16, 2007
  • 02:40 PM

I found some people who understand what I'm going through.

I've been having problems for about 6.5 years now. Prior to that I was a healthy woman who was overweight and had unknown fertility problems. I did develop pre-eclampsia with my first pregnancy (36 years old) and my blood pressure has been slightly high since them. I then lost 3 pregnancies, two early miscarriages and then an ecoptic pregnancy. At 39/40 I was pregnant and had many complications related to that pregnancy. My son was born in the spring of 2000 when I was 40 and things pretty much went back to normal health wise.

I have been overweight since I was a teen but very active and my weight did not prevent me from doing any activities. My hobbies are camping, hiking, backpacking, gem stone hunting, canoeing and nature studies. I spent my summers as a park naturalist doing nature hikes and programs. Rest of the year I trained teachers. I started scaling back on work when my first child was born and took some planned time off after my second child's birth. We also relocated from the East Coast to the mid-west soon after his birth and a year or so before I started having problems.

About 6.5 years ago I started gaining weight, 100+ pounds in just over a year. In addition I felt "blah" and tired all the time. Sort of like you feel just after you had the 'flu or other serious virus. After a couple of months of that I went to see a doctor. At the time my son was just over a year old and I was still breastfeeding him. This idiot doctor's opinion was that I was too old to have a newborn, I needed to wean him, put both kids in daycare and go back to work. I never went back to him.

The symptoms continued and others started. I went to see the next doctor who listened to half the symptoms and said "I know what it is, it must be your thyroid." Tested and it was normal. His decision was that I was seeking attention. I did convince him to run a Lyme's test, he said that no-one in this state has ever had Lyme's (which I knew wasn't true) and it couldn't be that. I said that I had been a park naturalist in the last 10 years with co-workers who did get Lyme's Disease. Plus we had been camping recently in states that had deer ticks. That test was also normal. He no longer listened to my symptoms and I would spend an hour or more in the waiting room (with my kids) and then go back to the exam room and he would spend less than 3 impatient minutes with me. I changed doctors.

In addition to the other symptoms, I was now having trouble with my menstral cycle, it was getting shorter, I was having extreme pain with ovulation and horrible, horrible mood swings for a week before my period started... which isn't good when you are having periods every 21 days. The new doc said "must be your thyroid", she did tests, everything was normal, the thyroid was higher but still in the normal range. She decided it was age and depression. So I went on anti-depressants. Now joint pain was joining the lineup of symptoms. She said it was just the depression. No matter waht happened, it was depression. She did send me to a dermatologist when my hair was falling out. The dermatologist examined my scalp and said "yep, it's falling out." Then said it was female pattern baldness and would just get worse. She that the 80% of the hair on my arms and legs and more than 50% of my eyebrows that I had lost was just cyclic and would grow back. She blamed age and genetics.

Sometime in there I developed asthma. Started an inhaled steriod for that and gained 26 pounds in 2 weeks.

I switched doctors again. This doctor tried to find out what was going on. She actually did tests other than just thyroid (which level was again higher but still in the normal range.) She sent me for a sleep study and I have severe sleep apnea. I noticed a huge improvement in my sleepiness level but the fatigue was the same. Now I had joint pains in my back, hips and knees. Every step I took was extremely painful. She did x-rays and sent me off to a physical therapist. After 3 months of PT and only mild improvement, I also started seeing a chriopractor. Still no answers and the doctor admitted she was stumped.

I then went to see a naturopathic MD who specializes in weight loss. He looked over my list of symptoms and said he wanted to do a trial of thyroid meds. Within 3 days I felt better than I had before.

I am still having gyn troubles but all the docs want to diagnosis me with PCOS, but since they have never done any hormone panels to really check and a reproductive endo on the east coast who treated me for infertility said I didnt' have, I dont' think they are right. Plus until I was over 40, my cycles were extremely predictible and I never missed a period except for pregnancy. Basically I keep getting large and painful ovarian cysts and they watch them by u/s and they've all dissolved on their own.

This summer I've started having problems again and right now something is going on that is causing an embarrasing gas problem and soem chest tightness. I see my doc tomorrow and hopefully he can find out what is going on.

After reading all the stuff here, I am going to contact a NAET provider and see how much that will cost. We have incurred so many medical bills that it took us almost into bankruptcy so money is a deciding factor in new treatments.

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10 Replies:

  • Since you have had ovarian problems, could it possibly be ovarian cancer?Why don't you get it checked out just to be sure. Sorry, don't mean to scare you. Ovarian cancer usually happens in women over age 50, but it can also affect younger women. Its cause is unknown. Ovarian cancer is hard to detect early. The sooner ovarian cancer is found and treated, the better your chance for recovery. But ovarian cancer is hard to detect early. Many times, women with ovarian cancer have no symptoms or just mild symptoms until the disease is in an advanced stage and hard to treat. Symptoms may include:Heavy feeling in pelvisPain in lower abdomenBleeding from the vaginaWeight gain or lossAbnormal periodsUnexplained back pain that gets worseGas, nausea, vomiting, or loss of appetiteTreatment is usually surgery followed by treatment with medicines called chemotherapy.
    rad-skw 1605 Replies
    • August 17, 2007
    • 08:41 AM
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  • Topaz,You could have more than one thing going on, esp. if you've gone many years untreated for hypothyroidism. Commonly, reported with it are sleep apnea/disorders, PCOS, anovulation after menopause, painful periods but may be regular, irregular periods, Fibromyalgia-like sx's from sleep apnea, and other conditions. That's what makes it so difficult to diagnose.After 3 days on medication you felt better? That is a huge clue. It takes about SIX MONTHS to get stabilized on the correct dose and that is only is you have no complications and/or concurrent conditions, which is usually not the case. To get there one has to go through many increases in the medication and blood tests to determine the proper TSH level.The correct dose is achieved by multiplying your ideal weight in kilograms by 1.6. If you're obese you might need to increase that dose to 2.0 or between 1.6 to 2.0. Every body is different and no two people have the same symptoms. For more info about this go to:http://thyroidtoday.com/ExpertOpinions/LabMedicine.asp?page=1andhttp://www.thyroidmanager.org/Chapter 9 and Treatment chapter.Proper TSH level is under 2.0 mIU/LFor dosing example:Desired ideal weight is 154Medication needed to feel healthy would be 112 mcg of Synthroid.
    Anonymous 42789 Replies
    • August 17, 2007
    • 08:56 AM
    • 0
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  • I was sick for a long time too!! The only real relief I found was with NAET/Bioset therapy. It is a form of accupressure combined with the theory of electromagnetic fields...which everyone knows exists. I was sick and desperate. I showed up in this forum, like you, looking for answers because the docs told me I was a "medical mystery"Well, turns out I wasn't. I had severe CFS..chronic fatigue syndrome.I'm not saying you have it but I'm saying your symptoms are similar.All that nature work/play...ever bit by a tick?..Lyme? No matter what the disgnosis is, Western docs are not abble to figure alot of us out...hence the fact we are all here trying to find our own answers. NAET/Bioset worked for me and I'm not alone! Read around, you'll see!! Best regards,mommy cat:D
    mommy cat 1654 Replies
    • August 17, 2007
    • 01:59 PM
    • 0
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  • Thanks for the replies. Rad-skw: Cancer? That is one thing that I have not considered or been tested for. Last fall I did have a large complex mass ovarian cyst and went back 6 weeks later for a follow up u/s and it was gone. How do they test for ovarian cancer? I am due for an annual exam in October, but maybe I should move that up to September. While I'm only 47, I did take injectible fertility drugs to get pregnant with my children and depending on which set of research you look at, fertility drugs may be a contributing factor to ovarian cancer. Dxd: I did feel better than I had in years after 3 days on Armour thyroid, but it took almost 9 months to get my dosage correct and my doc did follow up blood tests monthly for 6 months to make sure things were going OK. Now he tests every 3 months. I'm on 1.5 mg now. I do have sleep apnea and use a CPAP at night. It is believed that my arthritis is due to the thyroid problems not being treated for so long. Mommy cat: when I was working in the parks, ticks were an every day occurance. Several of my former park co-workers have had Lymes. I have been tested once and it was negative. I wish I had seen your message before I saw my doc today so I could have asked him more questions. I am considering NAET. I called a local practioner and he charges $85 for the intake session adn then the other sessions are $63 if he uses acupuncture or $55 if he uses acupressure. Money is really tight and I'm sure my insurance won't cover it, they are not fond of alternative treatments. I need to see if we can work it into the budget and talk to my husband about it. (The bonus is that if it works on my allergies to dogs, cats, and rodents, we can get the pet that my kids want.) We could probably only afford one session per month and I don't know if that would be effective.
    Anonymous 42789 Replies
    • August 17, 2007
    • 04:26 PM
    • 0
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  • I found some people who understand what I'm going through. I've been having problems for about 6.5 years now. Prior to that I was a healthy woman who was overweight and had unknown fertility problems. I did develop pre-eclampsia with my first pregnancy (36 years old) and my blood pressure has been slightly high since them. I then lost 3 pregnancies, two early miscarriages and then an ecoptic pregnancy. At 39/40 I was pregnant and had many complications related to that pregnancy. My son was born in the spring of 2000 when I was 40 and things pretty much went back to normal health wise. I have been overweight since I was a teen but very active and my weight did not prevent me from doing any activities. My hobbies are camping, hiking, backpacking, gem stone hunting, canoeing and nature studies. I spent my summers as a park naturalist doing nature hikes and programs. Rest of the year I trained teachers. I started scaling back on work when my first child was born and took some planned time off after my second child's birth. We also relocated from the East Coast to the mid-west soon after his birth and a year or so before I started having problems. About 6.5 years ago I started gaining weight, 100+ pounds in just over a year. In addition I felt "blah" and tired all the time. Sort of like you feel just after you had the 'flu or other serious virus. After a couple of months of that I went to see a doctor. At the time my son was just over a year old and I was still breastfeeding him. This idiot doctor's opinion was that I was too old to have a newborn, I needed to wean him, put both kids in daycare and go back to work. I never went back to him. The symptoms continued and others started. I went to see the next doctor who listened to half the symptoms and said "I know what it is, it must be your thyroid." Tested and it was normal. His decision was that I was seeking attention. I did convince him to run a Lyme's test, he said that no-one in this state has ever had Lyme's (which I knew wasn't true) and it couldn't be that. I said that I had been a park naturalist in the last 10 years with co-workers who did get Lyme's Disease. Plus we had been camping recently in states that had deer ticks. That test was also normal. He no longer listened to my symptoms and I would spend an hour or more in the waiting room (with my kids) and then go back to the exam room and he would spend less than 3 impatient minutes with me. I changed doctors. In addition to the other symptoms, I was now having trouble with my menstral cycle, it was getting shorter, I was having extreme pain with ovulation and horrible, horrible mood swings for a week before my period started... which isn't good when you are having periods every 21 days. The new doc said "must be your thyroid", she did tests, everything was normal, the thyroid was higher but still in the normal range. She decided it was age and depression. So I went on anti-depressants. Now joint pain was joining the lineup of symptoms. She said it was just the depression. No matter waht happened, it was depression. She did send me to a dermatologist when my hair was falling out. The dermatologist examined my scalp and said "yep, it's falling out." Then said it was female pattern baldness and would just get worse. She that the 80% of the hair on my arms and legs and more than 50% of my eyebrows that I had lost was just cyclic and would grow back. She blamed age and genetics. Sometime in there I developed asthma. Started an inhaled steriod for that and gained 26 pounds in 2 weeks. I switched doctors again. This doctor tried to find out what was going on. She actually did tests other than just thyroid (which level was again higher but still in the normal range.) She sent me for a sleep study and I have severe sleep apnea. I noticed a huge improvement in my sleepiness level but the fatigue was the same. Now I had joint pains in my back, hips and knees. Every step I took was extremely painful. She did x-rays and sent me off to a physical therapist. After 3 months of PT and only mild improvement, I also started seeing a chriopractor. Still no answers and the doctor admitted she was stumped. I then went to see a naturopathic MD who specializes in weight loss. He looked over my list of symptoms and said he wanted to do a trial of thyroid meds. Within 3 days I felt better than I had before. I am still having gyn troubles but all the docs want to diagnosis me with PCOS, but since they have never done any hormone panels to really check and a reproductive endo on the east coast who treated me for infertility said I didnt' have, I dont' think they are right. Plus until I was over 40, my cycles were extremely predictible and I never missed a period except for pregnancy. Basically I keep getting large and painful ovarian cysts and they watch them by u/s and they've all dissolved on their own. This summer I've started having problems again and right now something is going on that is causing an embarrasing gas problem and soem chest tightness. I see my doc tomorrow and hopefully he can find out what is going on. After reading all the stuff here, I am going to contact a NAET provider and see how much that will cost. We have incurred so many medical bills that it took us almost into bankruptcy so money is a deciding factor in new treatments.Here's my guess: You are very similar to me. I gained 100 pounds in a very short time. I'm sure the doughnuts didn't help, but I don't blame that. Your periods are getting closer and closer together, right? But not ABnormal. That indicates most likely a luteal phase defect...What causes that? Hmm....gas and bloating. Chest tightness. I wonder....does your tongue have the impression of your teeth on it when you stick it out? How's your hair? Skin?It sounds like you have CFS, but I LIKE that name of CFIDS, Chronic Immune Deficiency Syndrome, better.I would bet: Your thyroid isn't properly restored. DXD said :Proper TSH level is under 2.0 mIU/L", Dr.;s today test your TSH and ONLY treat you if it is over 5.0 mIU/L. I have read that dr.s MUST treat to keep the level under 3.o. As DXD suggested that might be conservative and 2.0 is better. THIS IS TRUE!!!Get your B12, methymalonic acid level--MMA, homocystein level and checkedto rule out Vitamin B12 deficiency. Have your folate checked as well. If your B12 level is less than 400 you need treated. I also bet your adrenals are deficient.Since you have had 3 misscarriages, I would also wonder if you had a coagulation defect. This is where the blood becomes sluggish and thick. It accounts for a great many of miscarriages and is solved by one baby aspirin a day prior to conception and during a part of the pregnancy but I am not sure how long as I know you shouldn't take asprin close to delivery and possibly in the last trimester. I would ask an OBGYN about this. Willow bark is also a natural alternative to the synthesized version: aspirin.I want you to know....I could not get pregnant without fertility drugs. I started treatment for CFS/CFIDS, and 3 weeks after....I am miraculously pregnant.. I knew I had a very low B12. My thyroid is still high. The two things that perhaps helped ME were the willow bark in a supplement I was taking as well as a few hormones.You see, it isn't simply Lyme, mycoplasma or that your thyroid is out of whack when you have Chronic Fatigue Syndrome. It is a multiple system disorder. One thing happens and then it cascades from there into vicious circles. If you don't have the fatigue component ...it tends to be called Fibromyalgia.The reason viruses are implicated in CFS is that those are basically assaults on your immune system: the physical stress that can cascade your body out of control. Lyme is very possible, but treatment for this won't address all of your symptoms. I have Mycoplasma and very high EBV.Again, it is worth getting "cancer" ruled out if rad-skw suggested that. But, I bet it is a multisystem disorder such as CFS. Check out immunesupport.com. or endfatigue.com. From Fatigued to Fantastic is another site to check out.I have not yet tried NAET/bio-set or muscle response testing....but am headed that way for some relief as I am pregnant and can't undergo much.I wish you luck. I know this is ***l! Write back and let us know how things are.V52
    Anonymous 42789 Replies
    • August 19, 2007
    • 04:10 AM
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  • V52, thanks for your reply. My doctors at the time thought my first two miscarriages were caused by a luteal phase defect and every month we were trying to conceive I had to take progesterone supplements. The third loss was an ectopic and probably unrelated to everything else. When I did get pregnant I had to be on progesterone supplements through the first trimester. The docs at the time (RE and OB/GYN) both said that unless I was trying to conceive that the LPD wasn't a big deal. That my cycles would be short but it wasn't a big thing. Probably why my current docs get more worked up over the short cycles than I do. I ran into difficulty with all the thyroid numbers, when all my symptoms started my TSH numbers were under 2.0 but by the time the current doc started treating based on symptoms alone my levels were "only" at about 3.8 for TSH and the T4 was about 1.1. My current TSH is under 1.0 and I don't remember the T4 levels. He did blood tests on Friday and I should have those back later this week. What can be done about adrenal problems? I've wondered about those since my NA and CL levels have been below normal in the past. Currently I'm on massive amounts of naproxen sodium which has raised the NA and CL levels to the low normal range. As for hair and skin, currently my hair is normal and almost back to previous volume, currently more brittle than normal as I am getting quite a collection of split ends. (But that could be because I have not had a trim in almost 2 years) It is also back to it's fast growth rate and in 2 years has gone from just above my shoulders down to just above my waist. Before the thyroid supplements I had lost 30% of my head hair volume, most of my arm and leg hair and about 2/3 of my eyebrows. My hair had been hip length but with losing it so rapidly and all the split ends I had it cut to above the shoulders length. My skin is getting dryer and I'm getting lots of "old age" spots on my arms and legs. (WHich could be normal for a 47 year old woman.) I wish I had found this forum before my appointment last week. I am taking notes and may call the doctor and ask questions once my blood tests are back later this week. Unless there are problems, he usually just makes a quick note on the lab report and then mails out a copy. Unfort. it looks like I probably cannot do NAET, we just cannot afford it right now. The treatments would be over $200 per month and insurance won't cover it. I'm looking for ways to pay for it. If I can pick up a freelance writing contract then I could pay for it. I'm sending out a letter to the publishers I have worked for letting them know I am available to write, they didn't have anything for me earlier this summer, but maybe they do now.
    Anonymous 42789 Replies
    • August 20, 2007
    • 11:23 AM
    • 0
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  • Dear Topaz, I didn't think I could "afford" NAET/Bioset therapy either. I wrote to a local practicioner and told him my story of being so ill with chronic fatigue syndrome that I hadn't worked in a year. I could not "afford" the treatments. Through a miracle of my prayers being answered, I was seen by this practicioner for a very reduced fee.Ask and you shall recieve. I asked, I recieved.I'm just saying, where there is a will, there is a way.Your lives are "priceless".I was very sick with over 70 symptoms. After 6 treatments, my symptoms are 90% resolved. best to you and your family, mommy cat:)
    mommy cat 1654 Replies
    • August 20, 2007
    • 10:26 PM
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  • Go to the gynecologist and tell your symptoms. I'm not sure, but isn't there a blood test?
    rad-skw 1605 Replies
    • August 21, 2007
    • 11:45 AM
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  • Have you considered seeing a geneticist?
    aquila 1263 Replies
    • August 21, 2007
    • 01:29 PM
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  • Have you considered seeing a geneticist? What could a geneticist tell me? I have never considered talking to one so I'm not sure what information they could give me. I got back the lab results with the doctor's notes on them. The doc said things look good, cholesterol is high but lower than last time, thyroid levels are in the normal range (TSH is 1.0) there was a new test on here that I havent' had before and the results were low. The test was GFR and it should be greater than 60 and mine was 52. The brief research online says that might indicate kidney problems. I need to talk to him about that. I have an appt. to see the GYN on the 29th. I researched the symptoms of ovarian cancer and there's not much there, just pelvic pain and bloating, which I have but could be a dozen things. However, when I looked at risk factors, I have almost all except genetics and age being over 55. Menses started prior to 12 and/or continuing past 50 (I'm 47 and still havign periods), delaying childbearing past 35, obesity, high fat diet, infertility and use of fertility drugs. Use of birth control pills is something that reduces risk and I took them for less than a year. I need to talk to the GYN about that.
    Anonymous 42789 Replies
    • August 21, 2007
    • 09:31 PM
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