Discussions By Condition: I cannot get a diagnosis.

Are all these related?

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: mz ldh
  • September 7, 2007
  • 03:16 AM

I’m a 26 yr old female. I have multiple health problems and I feel like they all could be related. Any suggestions or advice would be greatly appreciated. Here is my history: At 16 I had an emergency c-section to deliver my son. I had a tremendous amount of pain and I developed an infection after the surgery. When I was 18, I started having problems with chronic diarrhea and pain in my right side close to my gallbladder. My PCP did labs, ultrasound of my gallbladder, endoscopies, and a nuclear test to check the function of my gallbladder. All of these tests came back clear and the PCP said I was suffering from stress. The symptoms continued for another two years. I switched PCPs and the new doctor referred me to a gastroenterologist and to a gynecologist, because I had developed pain in my lower abdomen near my ovaries. The gastro repeated the endoscopy and also did an ultrasound of my whole abdomen. They didn’t find anything of importance. The gastro treated me for a bacteria infection of my digestive system and my symptoms subsided, but didn’t completely go away. The gyn I saw bluntly told me that if I was having pain then they needed to do surgery to find out why. So, I had laproscopy done. The doctor found scar tissue that was connecting my left ovary to my intestines. They separated everything and sent me on my way. At age 24, I start having the same symptoms again. I lost 20lbs in less than a month due to the diarrhea. The pain around my ovary had returned. I also had a couple of incidents of blurry vision that were blamed on migraines and I also became very sensitive to cold. I noticed that when the diarrhea came on I would become very pale and extremely cold (no matter the temperature). Since, I was in a new town, I went to a new PCP. He did labs to check my thyroid and the basic cbc, but all was clear. He blamed the weigh loss and diarrhea on stress due to a bad job and a divorce. He prescribed Lexapro. For the blurry vision, I was sent to a neurologist and ophthalmologist. The neurologist did an MRI and a CT. Both were clear. He acknowledged that he couldn’t explain the blurry vision, but he did think it was related to migraines that I’d had since I was 10 yrs old. So, he started me on different medications to treat the migraines. One of the meds made me gain 30lbs. I complained about the weight gain so he put me on Topomax. It was to treat the migraines and cause weight loss. I stayed on that for 6 mos and then I stopped taking it, because I was concerned about the correlation of the medication and vision problems. I was already having vision problems and I didn’t want to go blind. The ophthalmologist I saw gave me a clean bill of health. So, I’m still having blurry vision, diarrhea, sensitive to cold, pain near the left ovary. I decided, since I wasn’t getting any answers from my doctors, that I would completely clean my system of any medications I was taking. I stop taking all migraine meds, depo provera, and the lexapro the PCP had given me for stress. I did this in August of 2006. At the end of October of 2006, I left my high paying, high stress sales job in the hopes of feeling better. I started my new job and I was still having the same symptoms plus my periods didn’t return. By November, I had decided that I need to seek additional help. I made an appointment with the gastro from 6 yrs earlier. I was considered a new patient and I couldn’t see him until Feb 14, 2007. Happy Valentine’s day to me! When I saw the gastro, he felt pretty confident that it was some type of bacteria infection again. He did blood work, urine analysis, and a breath test. The breath test came back positive for bacteria. So, he put me on my first of many rounds of Xiafian. The diarrhea subsides when I’m taking the medicine. Once I stop taking it, within a month it comes back. Also during this time around April 2007, I went to see the same gyn who had done my laproscopy, who also had became my regular gyn. I advised him I had stopped taking the depo eight months ago and my periods had not returned. I also told him that I was having pain around my left ovary. He did an exam and blood test of my basic hormone levels. The blood test all came back “normal”. He advised me that he could do surgery again, but that would be up to me. He put me on a round of progesterone to try to start my periods. I felt awful. I had a lot of pain and felt really weak. The medicine didn’t work, but I also developed a new symptom, I started lactating. So, I’m not pregnant, my son is 10 yrs old and I’m lactating! I got really upset at this point. The gyno really wasn’t offering me any idea as to what was causing the lack of periods and lactation. He suggested I do another round of progesterone to see if it would work again. I refused to take the meds. So, a couple of months pass and the problems are still persisting. I called the doctor’s office back and asked them to call me in the lowest dose birth control pill. The nurse ran the gamete with questions and seemed pretty confused by my problems. None the same, the doctor called it in. My hopes are that the hormones will induce the lactation to stop and the periods to start. I have a week to go to see if I start my period and the lactation is still present. Now, I also have some new symptoms that don’t seem to be related to anything else. I’ve had 4 UTIs/ kidney infections in 6 months. I’m a educated person I know what causes UTIs and what to do to prevent them. All my efforts have failed. A doctor filling in for my PCP finally referred me to a Urologist. I have an appointment in two weeks. I’m also now having problems with getting dizzy when I stand up. I’ve been playing it off as I was getting up too fast, but it’s happening so frequently that I think it’s something more. So, now that everyone has the full history does anyone have any idea what’s wrong with me? Is it possible all these symptoms are related or do I have multiple problems? Also, I think this is important, every doctor I’ve seen has said that they thought I had some type of hormone imbalance, but none of them have been able to tell what is out of sync.

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11 Replies:

  • Hello,Some of your symptoms could be related to endometriosis. Here is a website discussing some of the symptoms: http://www.endo-resolved.com/symptoms.html
    Anonymous 42789 Replies
    • September 7, 2007
    • 04:18 AM
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  • "Postpartum thyroiditis is a painless inflammation of the thyroid gland that can occur in the mother usually four to 12 months after childbirth. The cause of this uncommon condition isn't known. You may be at increased risk of postpartum thyroiditis if you have an immune system disorder or a prior history of thyroiditis.If you have postpartum thyroiditis, you may initially experience signs and symptoms of overactive thyroid (hyperthyroidism), which may include rapid heartbeat, sudden and unexplained weight loss, nervousness, fatigue and increased sensitivity to heat. A diagnosis of hyperthyroidism can be confirmed by blood tests. Treatment may include beta blockers to reduce symptoms.Later, you may develop signs and symptoms of underactive thyroid (hypothyroidism), which may include unexplained weight gain, hoarse voice, constipation, puffy face, fatigue and increased sensitivity to cold. A diagnosis of hypothyroidism can be confirmed with blood tests. Treatment may include thyroid replacement hormone.In most cases, thyroid function returns to normal within 12 to 18 months after onset of symptoms. However, some women develop long-term hypothyroidism and need lifelong thyroid hormone replacement therapy.Rarely, hypothyroidism after childbirth is caused by Sheehan's syndrome, also called postpartum hypopituitarism. This condition may occur in women who have severe blood loss during childbirth resulting in damage to the anterior pituitary gland."Or maybe PCOS? adhesions from c-section?, IBS?
    rad-skw 1605 Replies
    • September 7, 2007
    • 09:43 AM
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  • I have had my thyroid check a number of times. Everytime the doctors tell me it's normal. It has been the first thing they've checked everytime I see a new doctor. I have been given a general label of IBS, but I just feel like there's more to this. I'm very concerned about PCOS or POF. My sister experienced POF in her twenties. Another piece of information I left off, is there is a STRONG family history of auto-immune diseases. I appreciate the suggestions, but believe me the normal bases have been covered.
    mz ldh 24 Replies
    • September 7, 2007
    • 00:05 PM
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  • I also wanted to let everyone know that my hair has thinned out and I have random pain. Last night, my hands were hurting. It felt like a sudden burning pain like it would just after an injury, but nothing had happened. It lasted most of the evening. I also get what feels like a muscle spasm in my neck on the right side. It's really sudden when it happens and it also doesn't seem to have an actual injury related to it.Does anyone have any other suggestions? I'm really frustrated with the doctors and I would like to get some type of quality of life back.:confused: Thanks!
    mz ldh 24 Replies
    • September 8, 2007
    • 08:20 PM
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  • mzldh...it sounds like you are experiencing several issues at once. I was too. Someone in this forum told me I should try NAET/Bioset therapy and I did. It worked...all of my symptoms are gone. I had most of your symptoms...I even had a c-section.Please find a local practicioner and go for the fist three treatments...you won't believe it. I am a nurse, so I was skeptical. Western med wasn't helping so I tried something "alternative" that did.Please take the advice, you will be glad you did!!Best regards, mommy cat
    mommy cat 1654 Replies
    • September 8, 2007
    • 10:15 PM
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  • Hi. The following symtpoms point to your endocrine system malfunctioning.NAET doesn't work. It's silly really and is more a a placeblo effect on those who are desperately seeking an answer.your lactating is cause by your pituitary gland (this is the only thing that would do that)Your symptoms ofhair sheddingjoint paincarpal tunnel like symptomsfatigeweeknessI'm also guessing you have depression and terrible mood swings are all associated with thyroid. Now, I know you've gone to your primary and I'm guessing he did a TSH, T3 and T4. Here's the ful list of tests you really need to accurately diagnose thyroid issuesTSH, T3, T4, FREE T3, FREE T4, T3RU, Reverse T3, TPOAb-which is thyroid peroixidaxe antibodies, Antithyroid Perodxidase Antibodies, Throglobulin antibodies/antithyroglobulin antibodies, throid receptor antibodies(trab), throid stimulating immunoglobulins (TSI). You doctor should MOST certaintly request either a xray or scan of your pituitary gland.The reason your tests came back normal is because the TSH is not the "only indicator" and to top it off, some of the labs today still dont' use the correct testing "RANGES". The new ranges are .3-3.0. Some labs are still using the old ranges of .5-5.0. I would ask your doctor for the actual numbers on the range where you tested. If it is close to or over 3.0 then it is hypothyroidsim.Here's another thing. Hashimoto's is an autoimmune disease cause by hypothyriodism and can cause same symtpoms. Do an internet search for specific tests needed to diagnose these. Your best bet is to see an endocrinologist at this point.Question - Do you get sore on the roof of your mouth? Have you acquired a rash on your face? Do you have severe pain with the diarrhea?I hope this was helpful.
    ChrissyK 1 Replies
    • September 18, 2007
    • 02:50 PM
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  • I have had my thyroid check a number of times. Everytime the doctors tell me it's normal. It has been the first thing they've checked everytime I see a new doctor. I have been given a general label of IBS, but I just feel like there's more to this. I'm very concerned about PCOS or POF. My sister experienced POF in her twenties. Another piece of information I left off, is there is a STRONG family history of auto-immune diseases. I appreciate the suggestions, but believe me the normal bases have been covered.What does normal mean? Are they checking your Free T4, Free T3, and TSH? Normal is a setting on the dryer.Any TSH over 3.0 could mean hypothyroidism esp. if your Free T4 & T3 are low.http://www.thyroidtoday.com/ is a great website with details about what is normal.Look for an article by Carole Spencer.
    Anonymous 42789 Replies
    • September 19, 2007
    • 01:37 AM
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  • I should’ve put normal in quotes, because I’m not sure what range the PCP is basing his normal rating from. I read some more today about over active and under active thyroids and I wonder if it’s possible to have a rapid cycle from one to the other? I have symptoms from both types. More of my symptoms fit into the under active side. To answer Chrissy’s questions, I try to be extremely conscious of my moods and my irritability with others. I think it’s because I’ve been told that my problems are all stress related or depression. I did notice that last week, I was extremely irritable. I just associated it with a problem going on at the time, but I did feel like something just wasn’t right. As for the pain, I sometimes cry out in pain. I scream, cry, and moan, because it hurts that bad. It’s gotten to the point to where I’ve been concerned about how family and friends would react. Most of them aren’t bother by it anymore. They understand it something I can’t control. I haven’t had a rash on my face, but I did break out with little bumps on my arms and chest last summer. No one could explain those (other than stress) and they went away. I do get little knots on my fingers from time to time too. It’s almost like an ant bite, but it doesn’t come to a head and usually goes away within a couple of days. The only time I get sores on the roof of my mouth are when I eat certain foods, like hard cereal. I appreciate everyone’s suggestions. I’ve thought about seeing an endocrinologist, but I have to go thru the whole referral process from my PCP. At this point since I’m about co-pay poor (although I’m grateful I’m insured), I think I’m going to get our company nurse to take my blood. I just have to get the PCP to write the order. That way I can save more time off work, a co-pay, and some hospital parking. I’m also going to ask what levels were/ are used to compare normal to abnormal. I’ll post an update when I have an answer. Please keep up the comments/ suggestions. I need everything I can get!
    mz ldh 24 Replies
    • September 19, 2007
    • 02:34 AM
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  • Hi, Sorry you are having to go through all this. Sounds to familiar to me. The thyroid levels are not " text book normal "for everyone, just the tiniest difference in what is considered normal range, makes a big difference in how we feel. Have you been tested for mycroplasmas and Tick/Misquito born co infections of Lyme Disease? Many auto immune diseases are caused by these. Often people never have the rash, so it it over looked for years. I had killer headaches and vision disturbances for yrs and if you do a search you will find them linked to Neuro Lyme. If left undx'd for a long time, it does affect the thyroid, adrenals and more.It may not be easy to get dx'd with Lyme or co infections. Check out Lymenet.org and stopthethyroidmaddness.org {maybe.com on the last one} Best wishes~~Jersey Lymie
    Anonymous 42789 Replies
    • September 20, 2007
    • 11:39 AM
    • 0
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  • I wanted to give everyone an update and respond to Jersey Lymie. I saw the urologist yesterday. She did a urinalysis and an x-ray to check for kidney stones. I have no infection at this time and no kidney stones. She asked me if I had any gyno problems. I said yes and started going thru the whole story. Without doing blood work, she tells me that my “serious lack of estrogen” is causing my body to be out of whack and once my hormone levels are normal again then I should not have UTI’s anymore. At first I felt relieved, because she was reaffirming what I already felt was wrong, but then after I talked with my significant other I got *****d. We both are questioning why my current gyno can’t figure this out. We are also very concerned that I’m permanently infertile. We both feel like the current gyno probably knows this and he has continued to treat me like I am fertile and could conceive. So, I’ve went from relief to more frustration. I have an appointment with a gyno specialist on October 2. The urologist said that was the best thing for me at the point and gave me an antibiotic to take after intercourse. That kind of takes the fun out of it! So, that’s where I am at the moment. Regarding Lyme disease: this is also something I’ve considered, but I haven’t looked at it in a while. I read about Amy Tan’s struggle with undiagnosed Lyme diseased and her symptoms matched my own. I was bitten by a tick in April of 2005. I’ve never been checked for Lyme disease. The reason why I don’t think this is Lyme disease is because I’ve had the symptoms since January 1999, off and on. But I always can be wrong! To give everyone a little more information, I live in Alabama aka as mosquito/ tick heaven. So, it’s really nothing to be bitten by a mosquito. A tick is cause for concern, but I watched for the usual tell, tell rash and it never developed, but as you pointed out I do have other symptoms. I’ll adding this to my list of requests for my blood work. Oh my, I don’t think I’m going to have any blood left! J
    mz ldh 24 Replies
    • September 22, 2007
    • 01:57 AM
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  • Please know that there are only 2 labs in the whole USA that test appropriately for Lyme disease. Bowen in FL and IgeneX in CA.This is information I learned here in this forum.If you have a lyme test anywhere else, chances are it will be negative.Please consider NAET/Bioset therapy as a way to control symptoms. Even the gyn/hormonal issues. I did it and it worked great.Hope you get to the bottom of this and get help for it. I know what it's like....no fun. mommy cat:)
    mommy cat 1654 Replies
    • September 22, 2007
    • 03:23 PM
    • 0
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