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Update on my condition...still issues
In Nov., I posted the following. My update and questions will follow...
I'm not sure where to begin. I have such a list of symptoms, whether connected or not. W/both pregnancies (1990 & 1998), I had ITP, & my platelet count still continues to run borderline low (right now, 145). In 2000, I was diagnosed w/hypothyroid, after seeking help @ a weight loss clinic (they reported a VERY high TSH). My PCP (also an internal med. spec.) concurred, & I began taking Armour thyroid. My TSH has fluctuated, over the years, wildly, from high to low. In 2001, I also began having a burning pain in my back, around the kidney area, for no reason, for which my PCP referred me to a gastroenterologist for follow up. I had a recurrance in 2004, after a surgery that turned into multiple surgeries (complications). Two gallbladder sonos & an upper GI were inconclusive, except for "MAYBE some stomach irritation." I was placed on Nexium for 3 months, for both flareups. I couldn't tell a difference.
Last summer, I had a bout of urticaria with throat constriction (my eyes would swell & I'd break out in hives), without any obvious allergy triggers, & the cause was never diagnosed. PCP told me to carry an EpiPen. Tests for Lupus were negative.
I went to my doc, a week ago, w/complaints of STILL having trouble losing weight (despite 1200-1500 cal., restricted carb diet & despite riding a bike 10-15 miles per day) with all my weight in my abdominal area, hair falling out on part line, facial hair growth, heavy periods that move around a bit each month, low blood pressure, sensitivity to cold/intermittent with very brief hot flashes, minor depression, brain "fog"/forgetfulness (w/no major stresses in life, right now, to explain them), and bruising easily. He ran a CBC w/differential, complete metabolic profile, Free T3 & T4, serum cortisol, and fasting insulin.
To my (and, I think, his) surprise, the results came back OPPOSITE of what my symptoms seem to suggest. The only level that was out of range was my TSH, and it was very low (0.034). My free T3 was 4.1 and my free T4 was 0.98. Glucose (91) & insulin (10.7) were fine. Platelets were low normal (145). Cortisol was 13.9.
I can't get over the nagging feeling that it might be my adrenals and/or pituitary gland. However, my PCP's way of dealing with fluctuating thyroid values, over the years, has merely been to raise or lower my medication, without further investigation. I have, currently, been taking 180mg, over the past year, with no alleviation of symptoms, but with my low TSH, he'll probably want to drop the dosage. He also stuck me back on Nexium, for two weeks, for another flareup of the back "burning" & difficulty swallowing food, & said he'd refer me back to GE doc, if it hasn't gotten better (it hasn't, so far). I think I need a referral to an endocrinologist. We've not gotten anywhere with the "dosage adjustment"/Nexium apporoach to fixing the biggest problems, over the years. What do you think?
OKAY...NOW FOR THE UPDATE:
I DID get the referral from my PCP for both the Gastro doc and the endocrinologist, but nothing much has been resolved. The gastro doc did a scope and found that I have a hiatal hernia, for which he prescribed ongoing Omeprazole therapy. The endocrinologist has been a nightmare! The doc my PCP wanted to send me to does not, apparently, take my insurance any longer, so he opted for a second choice that he was not that thrilled with. I now see why he wasn't thrilled with her.
On my first visit, she totally disregarded all concerns and possible diagnoses I asked about. I also don't mean to sound cruel, being that I have no room to talk, but it's kind of hard to take her seriously, when she, herself, is extremely morbidly obese and doesn't look "well." Her only suggestions were to do more weight training (to build muscle mass) and to switch from Armour to Synthroid (which she, incidentally, forgot to do, after suggesting it.). I returned to see her in April, and she did more lab work on my thyroid levels and some hormones, after noting that I had a 4 lb. weight gain (with no change in lifestyle) in 3 months. She called me a couple of weeks later and informed me that I have now swung back in the other direction (HYPO again). That's when she finally switched me to Synthroid. I'm taking 200 mcg, right now, and I can't say I feel any better...in fact, I feel worse. Not the least of the big concerns is that I've noticed that, since beginning Synthroid, my face and hands have swollen, and I have more edema in my ankles. I've always been able to remove my wedding ring before, but now, I haven't been able to take it off my finger in two weeks.
Does anyone know what I should do or say to my endo? My insurance, unfortunately, doesn't give me much choice in doctors (the only other one only accepts children). The swelling is very alarming. Also, I've been itching all over, like crazy!! Will I EVER feel good again? (Sorry this is so long).
I'm not sure where to begin. I have such a list of symptoms, whether connected or not. W/both pregnancies (1990 & 1998), I had ITP, & my platelet count still continues to run borderline low (right now, 145). In 2000, I was diagnosed w/hypothyroid, after seeking help @ a weight loss clinic (they reported a VERY high TSH). My PCP (also an internal med. spec.) concurred, & I began taking Armour thyroid. My TSH has fluctuated, over the years, wildly, from high to low. In 2001, I also began having a burning pain in my back, around the kidney area, for no reason, for which my PCP referred me to a gastroenterologist for follow up. I had a recurrance in 2004, after a surgery that turned into multiple surgeries (complications). Two gallbladder sonos & an upper GI were inconclusive, except for "MAYBE some stomach irritation." I was placed on Nexium for 3 months, for both flareups. I couldn't tell a difference.
Last summer, I had a bout of urticaria with throat constriction (my eyes would swell & I'd break out in hives), without any obvious allergy triggers, & the cause was never diagnosed. PCP told me to carry an EpiPen. Tests for Lupus were negative.
I went to my doc, a week ago, w/complaints of STILL having trouble losing weight (despite 1200-1500 cal., restricted carb diet & despite riding a bike 10-15 miles per day) with all my weight in my abdominal area, hair falling out on part line, facial hair growth, heavy periods that move around a bit each month, low blood pressure, sensitivity to cold/intermittent with very brief hot flashes, minor depression, brain "fog"/forgetfulness (w/no major stresses in life, right now, to explain them), and bruising easily. He ran a CBC w/differential, complete metabolic profile, Free T3 & T4, serum cortisol, and fasting insulin.
To my (and, I think, his) surprise, the results came back OPPOSITE of what my symptoms seem to suggest. The only level that was out of range was my TSH, and it was very low (0.034). My free T3 was 4.1 and my free T4 was 0.98. Glucose (91) & insulin (10.7) were fine. Platelets were low normal (145). Cortisol was 13.9.
I can't get over the nagging feeling that it might be my adrenals and/or pituitary gland. However, my PCP's way of dealing with fluctuating thyroid values, over the years, has merely been to raise or lower my medication, without further investigation. I have, currently, been taking 180mg, over the past year, with no alleviation of symptoms, but with my low TSH, he'll probably want to drop the dosage. He also stuck me back on Nexium, for two weeks, for another flareup of the back "burning" & difficulty swallowing food, & said he'd refer me back to GE doc, if it hasn't gotten better (it hasn't, so far). I think I need a referral to an endocrinologist. We've not gotten anywhere with the "dosage adjustment"/Nexium apporoach to fixing the biggest problems, over the years. What do you think?
OKAY...NOW FOR THE UPDATE:
I DID get the referral from my PCP for both the Gastro doc and the endocrinologist, but nothing much has been resolved. The gastro doc did a scope and found that I have a hiatal hernia, for which he prescribed ongoing Omeprazole therapy. The endocrinologist has been a nightmare! The doc my PCP wanted to send me to does not, apparently, take my insurance any longer, so he opted for a second choice that he was not that thrilled with. I now see why he wasn't thrilled with her.
On my first visit, she totally disregarded all concerns and possible diagnoses I asked about. I also don't mean to sound cruel, being that I have no room to talk, but it's kind of hard to take her seriously, when she, herself, is extremely morbidly obese and doesn't look "well." Her only suggestions were to do more weight training (to build muscle mass) and to switch from Armour to Synthroid (which she, incidentally, forgot to do, after suggesting it.). I returned to see her in April, and she did more lab work on my thyroid levels and some hormones, after noting that I had a 4 lb. weight gain (with no change in lifestyle) in 3 months. She called me a couple of weeks later and informed me that I have now swung back in the other direction (HYPO again). That's when she finally switched me to Synthroid. I'm taking 200 mcg, right now, and I can't say I feel any better...in fact, I feel worse. Not the least of the big concerns is that I've noticed that, since beginning Synthroid, my face and hands have swollen, and I have more edema in my ankles. I've always been able to remove my wedding ring before, but now, I haven't been able to take it off my finger in two weeks.
Does anyone know what I should do or say to my endo? My insurance, unfortunately, doesn't give me much choice in doctors (the only other one only accepts children). The swelling is very alarming. Also, I've been itching all over, like crazy!! Will I EVER feel good again? (Sorry this is so long).
It's (obviously) been a while since I've posted any updates. I'd like to say things have gotten better, but they haven't. I'm really beginning to believe the PCOS was the right direction to take. Since my last post, I've had a 35 lb. weight gain, despite ZERO changes in diet or exercise, and the heavy periods persisted, and I began having severe, labor-like cramping with it. I posted about this on the women's health forum, but I'll repeat the basics here: Told my gyno about it, he ran a series of blood work. Results showed normal thyroid panel, normal glucose, slightly elevated total cholesterol and LDL, and slightly elevated creatine and low eGFR (these two can indicate kidney damage). The gyno ordered a sonogram, which revealed a large, twisted cyst on left ovary, "shrivelled up," non-productive right ovary, two golf ball-sized fibroids in uterus, and enlarged uterus. So gyno did an endometrial biopsy. I just found out today that it came back negative for cancer (thank God). So, before he goes to hysterectomy, he wants to try a 3-month regimen of Provera, and see if that "fixes" the bleeding issues. Oh, btw, my endocrinologist reacted to my gynocologist's findings with her usual indifference (Essentially: "Your thyroid levels are fine, so the rest is of no concern to me.")
I have to admit I am disappointed by the news. I know surgery is never something to be entered into lightly, but I don't know if I have the emotional fortitude to handle one more period, "normal" or not. I hate, hate, hate "that time" and the ruined underwear, social accidents, cramping, PMDD, EXTREME mood swings (I am not exaggerating about that one...my poor husband and kids.), and zero sex drive. It may very well be hormonal, but with proof of fibroids and a cyst, I'm not understanding how "cleansing the extra uterine lining" is going to help those. I'm afraid what will happen is that the Provera treatment will fail, and I'll end up with a hysterectomy anyway, and, by then, my company will have switched our insurance to a much more expensive out of pocket plan, so it will cost me about 3 times as much.
And I am DEFINITELY not one of those women who would has some unnatural attachment my uterus. I am disgusted by the whole menstrual thing anyway. I put up with it, during my fertile years, because I knew the benefit would be children, but, now that I'm done having kids, I fail to see its continued purpose. I am still around a decade away from menopause, though I could be entering peri-menopause. I just can't stand the thought of dealing with this for another 10 or more years.
I would just love to feel well again. I'm beginning to forget what it feels like.
I have to admit I am disappointed by the news. I know surgery is never something to be entered into lightly, but I don't know if I have the emotional fortitude to handle one more period, "normal" or not. I hate, hate, hate "that time" and the ruined underwear, social accidents, cramping, PMDD, EXTREME mood swings (I am not exaggerating about that one...my poor husband and kids.), and zero sex drive. It may very well be hormonal, but with proof of fibroids and a cyst, I'm not understanding how "cleansing the extra uterine lining" is going to help those. I'm afraid what will happen is that the Provera treatment will fail, and I'll end up with a hysterectomy anyway, and, by then, my company will have switched our insurance to a much more expensive out of pocket plan, so it will cost me about 3 times as much.
And I am DEFINITELY not one of those women who would has some unnatural attachment my uterus. I am disgusted by the whole menstrual thing anyway. I put up with it, during my fertile years, because I knew the benefit would be children, but, now that I'm done having kids, I fail to see its continued purpose. I am still around a decade away from menopause, though I could be entering peri-menopause. I just can't stand the thought of dealing with this for another 10 or more years.
I would just love to feel well again. I'm beginning to forget what it feels like.
Darlingdiva & Kat, thanks again for your replies.
Darlingdiva, yes, I have had Hashimoto's since at least 2000 (at least, that's when I was diagnosed). My levels have been all over the place, since, and I was recently switched from Armour to Synthroid (which I'm not happy about...see original post above.).
Kat, your teaching hospital idea is a very good one. Unfortunately, I'm not sure it would work, in my case. My PCP is also an internal medicine specialist, and is the only one in this process who has ever seemed genuinely interested in my situation. I'm thinking about going back to him, for advice (at this point, he's totally unaware of the difficulties I've been having with my endocrinologist...He wasn't thrilled with the referral choices my insurance gave him, but he went with the only one he was familiar with, on my list. He really didn't want to send me to her. Now I know why.).
If I am backed into a corner, I will probably go to my PCP's first choice (the one that doesn't take my insurance) and just pay his part out of pocket. If he sends me to the right labs, pharmacies, testing clinics, etc, those parts should still be covered by my insurance.
Thank you for your well-wishes. This has been so frustrating. I realize I have not been assertive enough, regarding my care, and that part is my fault. I just get so embarrassed, when a doctor gives me that "You're crazy for thinking THAT could be it" look, when I tell them my symptoms and ask about diagnoses. I never claimed to be a doctor, but I'm no idiot, either, and I can very well tell when something in my body is not functioning properly. Their job is to tell me why. If they run all the tests and STILL come back with "Sorry...we just don't know what to tell you", then I don't fault them. But, when they refuse to investigate, to begin with, then I have a big problem with that.
I have better things to do with my time and money than spend it sitting in doctor's offices or clinics. I don't get my kicks out of trying to "create" diagnoses for myself. I just want to know what's wrong, and if anything can be done to fix it.
Thanks for letting me rant.
Darlingdiva, yes, I have had Hashimoto's since at least 2000 (at least, that's when I was diagnosed). My levels have been all over the place, since, and I was recently switched from Armour to Synthroid (which I'm not happy about...see original post above.).
Kat, your teaching hospital idea is a very good one. Unfortunately, I'm not sure it would work, in my case. My PCP is also an internal medicine specialist, and is the only one in this process who has ever seemed genuinely interested in my situation. I'm thinking about going back to him, for advice (at this point, he's totally unaware of the difficulties I've been having with my endocrinologist...He wasn't thrilled with the referral choices my insurance gave him, but he went with the only one he was familiar with, on my list. He really didn't want to send me to her. Now I know why.).
If I am backed into a corner, I will probably go to my PCP's first choice (the one that doesn't take my insurance) and just pay his part out of pocket. If he sends me to the right labs, pharmacies, testing clinics, etc, those parts should still be covered by my insurance.
Thank you for your well-wishes. This has been so frustrating. I realize I have not been assertive enough, regarding my care, and that part is my fault. I just get so embarrassed, when a doctor gives me that "You're crazy for thinking THAT could be it" look, when I tell them my symptoms and ask about diagnoses. I never claimed to be a doctor, but I'm no idiot, either, and I can very well tell when something in my body is not functioning properly. Their job is to tell me why. If they run all the tests and STILL come back with "Sorry...we just don't know what to tell you", then I don't fault them. But, when they refuse to investigate, to begin with, then I have a big problem with that.
I have better things to do with my time and money than spend it sitting in doctor's offices or clinics. I don't get my kicks out of trying to "create" diagnoses for myself. I just want to know what's wrong, and if anything can be done to fix it.
Thanks for letting me rant.
It sure is frustrating when we're stopped short of getting real answers to our health problems. I have 3 friends with PCOS and they have had some of the same issues as you. It may be that your symptoms are coming from multiple sources which would make putting them all together to form a completed puzzle difficult. I think your intuitions are good. Any chance your insurance would pay a local pro-rated clinic associated with a teaching hospital? I got such excellent care at one that when my insurance kicked in I kept going there.
I do have one question for you. I noticed you said you do not have sleep apnea. Were you tested for it? I just didn't know if you were saying you've never been diagnosed with it or had been tested and don't have it. Sleep apnea is on the symptom list for PCOS and for hypothyroidism, and is also associated with reflux and GERD, and can cause symptoms of depression, memory loss, lethargy, and weight gain especially around the midsection.
So sorry to hear you've had such a long ordeal with so few answers. Best wishes in finding a way to feel better.
I do have one question for you. I noticed you said you do not have sleep apnea. Were you tested for it? I just didn't know if you were saying you've never been diagnosed with it or had been tested and don't have it. Sleep apnea is on the symptom list for PCOS and for hypothyroidism, and is also associated with reflux and GERD, and can cause symptoms of depression, memory loss, lethargy, and weight gain especially around the midsection.
So sorry to hear you've had such a long ordeal with so few answers. Best wishes in finding a way to feel better.
Plateletgal & Darlingdiva, thank you for your responses. Let me try to address them. I can't recall, either, what is considered "high" on cortisol, but I know I was told that it was within "normal" range...high normal, but still normal.
I thought about kidneys, too, and also blood pressure. I don't go back to see the endo until October, so I may have to call her office and ask to speak to her about this new development.
Plateletgal, PCOS is one of the first things I mentioned to my endo, given my symptoms...that and Cushings. I have most of the symptoms you mentioned, except the high cholesterol, high bp, apnea, diabetes, and infertility (I'm "fixed"). But I have had female problems since puberty, especially prior to having kids, and I have all the rest, including the skin tags on my neck and the hirstuism. When I mentioned PCOS and/or Cushings, the doctor just shook her head and totally dismissed the idea. She wasn't even willing to investigate, for my own peace of mind. In reference to the hirstuism, she commented that obesity, itself, can cause it. She did, after I wouldn't leave the issue alone, agree to test my testosterone level, and it came back within normal range, but she has, thusfar, refused any further testing.
Ironic thing is...my 17 yr old daughter has had many of the same problems I had at her age (missing periods, followed by extremely heavy periods), along with some of the symptoms I have now (tiredness, weight gain, skin tags, mild depression, etc.). I took her, a few weeks ago, to a gynecologist, and they started her on the pill and said she probably had PCOS. Yesterday, her labs came back, indicating an essentially non-functioning thyroid, so they are going to palpate her thyroid and begin medication. She is, unfortunately, patterning exactly after me.
I'm fortunate HER doctor will listen to her!! Maybe I should submit my care over to the gynecologist and send the endocrinologist packing!!!
Thanks for reading and responding.
I thought about kidneys, too, and also blood pressure. I don't go back to see the endo until October, so I may have to call her office and ask to speak to her about this new development.
Plateletgal, PCOS is one of the first things I mentioned to my endo, given my symptoms...that and Cushings. I have most of the symptoms you mentioned, except the high cholesterol, high bp, apnea, diabetes, and infertility (I'm "fixed"). But I have had female problems since puberty, especially prior to having kids, and I have all the rest, including the skin tags on my neck and the hirstuism. When I mentioned PCOS and/or Cushings, the doctor just shook her head and totally dismissed the idea. She wasn't even willing to investigate, for my own peace of mind. In reference to the hirstuism, she commented that obesity, itself, can cause it. She did, after I wouldn't leave the issue alone, agree to test my testosterone level, and it came back within normal range, but she has, thusfar, refused any further testing.
Ironic thing is...my 17 yr old daughter has had many of the same problems I had at her age (missing periods, followed by extremely heavy periods), along with some of the symptoms I have now (tiredness, weight gain, skin tags, mild depression, etc.). I took her, a few weeks ago, to a gynecologist, and they started her on the pill and said she probably had PCOS. Yesterday, her labs came back, indicating an essentially non-functioning thyroid, so they are going to palpate her thyroid and begin medication. She is, unfortunately, patterning exactly after me.
I'm fortunate HER doctor will listen to her!! Maybe I should submit my care over to the gynecologist and send the endocrinologist packing!!!
Thanks for reading and responding.
One thing I would consider asking about is polycystic ovary syndrome (PCOS).
Symptoms of PCOS include (source: http://www.4woman.gov/FAQ/pcos.htm#e)
infrequent menstrual periods, no menstrual periods, and/or irregular bleeding
infertility (not able to get pregnant) because of not ovulating
increased hair growth on the face, chest, stomach, back, thumbs, or toes—a condition called hirsutism (HER-suh-tiz-um)
ovarian cysts
acne, oily skin, or dandruff
weight gain or obesity, usually carrying extra weight around the waist
insulin resistance or type 2 diabetes
high cholesterol
high blood pressure
male-pattern baldness or thinning hair
patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
skin tags, or tiny excess flaps of skin in the armpits or neck area
pelvic pain
anxiety or depression due to appearance and/or infertility
sleep apnea—excessive snoring and times when breathing stops while asleep
Swelling makes me think kidneys. Get a referral for a nephrologist...aka kidney doc.
Cortisol was 13.9.
I can't remember what the normal range is for a cortisol level. Was your result high or was it normal ?
I can't remember what the normal range is for a cortisol level. Was your result high or was it normal ?
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