Aa
Needing advice and some response
Hi,
I am hoping for some answers, because I am having difficulty in functioning with hypothyroidism. I recently participated in a discussion on the board where it was mentioned that there were certain challenges associated with people also having fibromyalgia syndrome with hypothyroidism. I tried to search using those key words both on this site and elsewhere, but I want to find an article that my doctor will take seriously. If there are challenges that might be being missed in my routine screening of the thyroid, I want to address them. I am basically not functioning. The sweating has started again and also my movement is out of control. These things seem to be related to my thyroid replacement. I am so down that I haven't even called to have a copy of my records sent so I could post recent lab values. I did have a ferritin test and am awaiting the results. Here are some of the symptoms that are occurring:
1) Persistant low weight-95 pounds, 5'4".
2) Trouble with temperature regulation and then sweats/with chills.
3) Restlessness and insomnia
4) Waking with pounding heart although pulse appears normal. Walking a short distance will bring on this condtion. It takes a long time of lying down for this symptoms to subside.
5) Dry skin to the point of not being able to use soap when bathing or showering.
5) Lack of appetite
6) Lack of sex drive/sexual functioning.
7) Production of small amount of breast milk.
Please try to help me find some info that might improve the doc's visit. My doc is not very good and bases all choices on lab results only.
Thanks,
Cheryl
I am hoping for some answers, because I am having difficulty in functioning with hypothyroidism. I recently participated in a discussion on the board where it was mentioned that there were certain challenges associated with people also having fibromyalgia syndrome with hypothyroidism. I tried to search using those key words both on this site and elsewhere, but I want to find an article that my doctor will take seriously. If there are challenges that might be being missed in my routine screening of the thyroid, I want to address them. I am basically not functioning. The sweating has started again and also my movement is out of control. These things seem to be related to my thyroid replacement. I am so down that I haven't even called to have a copy of my records sent so I could post recent lab values. I did have a ferritin test and am awaiting the results. Here are some of the symptoms that are occurring:
1) Persistant low weight-95 pounds, 5'4".
2) Trouble with temperature regulation and then sweats/with chills.
3) Restlessness and insomnia
4) Waking with pounding heart although pulse appears normal. Walking a short distance will bring on this condtion. It takes a long time of lying down for this symptoms to subside.
5) Dry skin to the point of not being able to use soap when bathing or showering.
5) Lack of appetite
6) Lack of sex drive/sexual functioning.
7) Production of small amount of breast milk.
Please try to help me find some info that might improve the doc's visit. My doc is not very good and bases all choices on lab results only.
Thanks,
Cheryl
If I seem to be belaboring my point, I apologize. I just think it is important for Cheryl especially, but also for everyone who struggles with hormone-related symptoms, to know that it is possible to search high and low for a diagnosis that explains your symptoms and never find it. Why? Because a person can have symptoms that do not seem logically related to what is really wrong, and this not entirely logical pattern of symptoms is not in the medical literature (although it may be, someday).
In what Cheryl described, I see the same sort of "mixed bag" set of symptoms that I have had. What has helped me the most was finding a highly competent endocrinologist who likes to solve puzzles (rather than preferring to focus only on lab test results) and who listens to me very closely when I tell him what I am experiencing. He has been extremely careful to be sure he is not overlooking something in addition to hypothyroidism. Beyond that, he views my problem as an atypical case and then focuses on the "What can we do about it?" puzzle. That is the important puzzle, and do not think that it cannot be solved if your symptoms do not fit into a recognized diagnostic category.
I do not know whether it is a coincidence, Cheryl, that you have fibromyalgia and I have many of its symptoms, but I wonder if we share a tendency to have mixed bags of sometimes wack-o symptoms. If only I had a dollar for every time my rheumatologist has said, "I do not understand why this (fill in the blank with my symptom du jour) is happening to you." Now my endocrinologist has said the same thing more than once. What matters is that both of them, after they have shrugged their shoulders because they are baffled, put a shoulder to the wheel and push hard to figure out how to DO something to improve my well-being.
I want to echo GravesLady's thought: I am so sorry you are not feeling well. Take your time in responding to us...if you choose to respond at all. I know how difficult it can be just to hold daily life together without trying to do anything that is not absolutely necessary. I hope that you can draw some strength from our supportiveness and not feel any time pressure about sending a reply.
In what Cheryl described, I see the same sort of "mixed bag" set of symptoms that I have had. What has helped me the most was finding a highly competent endocrinologist who likes to solve puzzles (rather than preferring to focus only on lab test results) and who listens to me very closely when I tell him what I am experiencing. He has been extremely careful to be sure he is not overlooking something in addition to hypothyroidism. Beyond that, he views my problem as an atypical case and then focuses on the "What can we do about it?" puzzle. That is the important puzzle, and do not think that it cannot be solved if your symptoms do not fit into a recognized diagnostic category.
I do not know whether it is a coincidence, Cheryl, that you have fibromyalgia and I have many of its symptoms, but I wonder if we share a tendency to have mixed bags of sometimes wack-o symptoms. If only I had a dollar for every time my rheumatologist has said, "I do not understand why this (fill in the blank with my symptom du jour) is happening to you." Now my endocrinologist has said the same thing more than once. What matters is that both of them, after they have shrugged their shoulders because they are baffled, put a shoulder to the wheel and push hard to figure out how to DO something to improve my well-being.
I want to echo GravesLady's thought: I am so sorry you are not feeling well. Take your time in responding to us...if you choose to respond at all. I know how difficult it can be just to hold daily life together without trying to do anything that is not absolutely necessary. I hope that you can draw some strength from our supportiveness and not feel any time pressure about sending a reply.
Hi,
I have been meaning to respond, but things have been awful for me. I am going to respond briefly to everyone and try to cover all points.
I have gone through a few endos and because of incapatability, the one who is known in this area as good does not want to see me. She has access to all of my confidential records and I feel a bit violated by that. It is a system called the Providence Health Care System. I would like to write my whole story and have started to, but it is complex. I remember after I was diagnosed (54% uptake) with Graves', a "thyroidologist" at Oregon Health Science University told me that she didn't think I should do anything. I have been through about 4 endos at this point, and it would take a lot for me to explain why they didn't work out for me. I am afraid at this point that I don't know how to find one. Furthermore, I need a referral to get one, and getting my PCP to do that is so much fun. I did find a possibility of a GP that was recommended on another site as being open-minded and good for thyroid disease. Getting someone to take Medicare is a hurdle, but this one does.
My symptoms are confusing, but what I do know is that until I became severely ill with Graves', the FMS was in remission for four years. I know it might seem that I am hyper, because of my weight loss and lack of appetite and some other symptoms (palps). But when I first became hypo after RAI, I started losing my appetite and losing weight. I finally hit about 94 pounds. My endo didn't care and said I was lucky that I wouldn't have to lose weight. My GI doctor disagreed and prescribed Marinol. I never could tolerate it, but no other nausea med worked and Phenergan added to the movement, especially the doses they had me on (150 mg/daily). I settled on a small dose of Marinol (2.5 mg). I even have problem with that. It seems to be related to faster heart beat. I have been weaning off of it. I remember when I first went on it, and my GI doctor said if you can't afford it, do what you have to do. She told me that she couldn't say anymore, she told me at the time without risking her license. I became bothered by being on Marinol and finally tried a low dose of Remeron hoping it would help sleep and appetite. It did briefly, but now it is adding on to my RLS and its affects are gone. I am down to Marinol every other day, at least. Sometimes, I go two days without it, but I couldn't stand how I was feeling last night and decided to take it.
I am so down that there is no way for me to tell you how down I am. I feel like my life is over. I have been ill with this for so long and the docs keep telling me to "hang in there." I don't know how long I can anymore. I am housebound from my illness. I get breaks from time to time, and it is in this time that I try to make up for all the lost time. My kids are growing up and I am a mess. I went through so much to get pregnant, because my husband is a survivor of testicular cancer. I went through $20,000 worth of fertility procedures. They missed the thyroid problem.
I plan to post my labs, although they were within the "target" range, I believe. It doesn't explain why the symptomology is getting worse. I believe I am going hypo again. My breasts are tender and I am producing milk. This is my first sign.
I don't know if I answered everything. I have been a mess for the last few days. But last night was tormentuous. I was moving incessantly. I was sweating so badly and I couldn't dry off. It went on for about 3-4 hours. I didn't sleep until passed 3 AM and startled awake at 7:30 AM or so. I had to wear earplugs for several hours because of sensitivity to noise. It is bad enough that I have to do this at night, but to do it during the day, is hard to handle. I use a noisemaker in my room that is so loud that I can't believe I can hear anything through it.
I have had my ferritin checked and it was 49. I am taking Iron, because it is recommended under 50 when RLS presents. Plus, I have heard low ferritin can affect how thyroid meds work. As far as cortisol, no doctor including Endos believe it is possible. They have run tests on me and say I am fine. I think they should see a videotape of my life and it is far from fine.
I cannot remember who is the social scientist, but I agree my doc isn't likely to change the way she is. I guess I have given up on life to a certain degree. I have been able to convince her of certain things, but not without consequence to my health. I need to fire her, but I can't until I find a replacement willing to treat me and prescribe what I am on. This is challenging.
I am/was a sociology major until my illness took me down. I have to say that I am at one of the lowest points in my life. I am not sure that life is worth living any longer.
I do appreciate the time everyone took to respond to me and will try to post labs when I have them in hand.
Thanks,
Cheryl
I have been meaning to respond, but things have been awful for me. I am going to respond briefly to everyone and try to cover all points.
I have gone through a few endos and because of incapatability, the one who is known in this area as good does not want to see me. She has access to all of my confidential records and I feel a bit violated by that. It is a system called the Providence Health Care System. I would like to write my whole story and have started to, but it is complex. I remember after I was diagnosed (54% uptake) with Graves', a "thyroidologist" at Oregon Health Science University told me that she didn't think I should do anything. I have been through about 4 endos at this point, and it would take a lot for me to explain why they didn't work out for me. I am afraid at this point that I don't know how to find one. Furthermore, I need a referral to get one, and getting my PCP to do that is so much fun. I did find a possibility of a GP that was recommended on another site as being open-minded and good for thyroid disease. Getting someone to take Medicare is a hurdle, but this one does.
My symptoms are confusing, but what I do know is that until I became severely ill with Graves', the FMS was in remission for four years. I know it might seem that I am hyper, because of my weight loss and lack of appetite and some other symptoms (palps). But when I first became hypo after RAI, I started losing my appetite and losing weight. I finally hit about 94 pounds. My endo didn't care and said I was lucky that I wouldn't have to lose weight. My GI doctor disagreed and prescribed Marinol. I never could tolerate it, but no other nausea med worked and Phenergan added to the movement, especially the doses they had me on (150 mg/daily). I settled on a small dose of Marinol (2.5 mg). I even have problem with that. It seems to be related to faster heart beat. I have been weaning off of it. I remember when I first went on it, and my GI doctor said if you can't afford it, do what you have to do. She told me that she couldn't say anymore, she told me at the time without risking her license. I became bothered by being on Marinol and finally tried a low dose of Remeron hoping it would help sleep and appetite. It did briefly, but now it is adding on to my RLS and its affects are gone. I am down to Marinol every other day, at least. Sometimes, I go two days without it, but I couldn't stand how I was feeling last night and decided to take it.
I am so down that there is no way for me to tell you how down I am. I feel like my life is over. I have been ill with this for so long and the docs keep telling me to "hang in there." I don't know how long I can anymore. I am housebound from my illness. I get breaks from time to time, and it is in this time that I try to make up for all the lost time. My kids are growing up and I am a mess. I went through so much to get pregnant, because my husband is a survivor of testicular cancer. I went through $20,000 worth of fertility procedures. They missed the thyroid problem.
I plan to post my labs, although they were within the "target" range, I believe. It doesn't explain why the symptomology is getting worse. I believe I am going hypo again. My breasts are tender and I am producing milk. This is my first sign.
I don't know if I answered everything. I have been a mess for the last few days. But last night was tormentuous. I was moving incessantly. I was sweating so badly and I couldn't dry off. It went on for about 3-4 hours. I didn't sleep until passed 3 AM and startled awake at 7:30 AM or so. I had to wear earplugs for several hours because of sensitivity to noise. It is bad enough that I have to do this at night, but to do it during the day, is hard to handle. I use a noisemaker in my room that is so loud that I can't believe I can hear anything through it.
I have had my ferritin checked and it was 49. I am taking Iron, because it is recommended under 50 when RLS presents. Plus, I have heard low ferritin can affect how thyroid meds work. As far as cortisol, no doctor including Endos believe it is possible. They have run tests on me and say I am fine. I think they should see a videotape of my life and it is far from fine.
I cannot remember who is the social scientist, but I agree my doc isn't likely to change the way she is. I guess I have given up on life to a certain degree. I have been able to convince her of certain things, but not without consequence to my health. I need to fire her, but I can't until I find a replacement willing to treat me and prescribe what I am on. This is challenging.
I am/was a sociology major until my illness took me down. I have to say that I am at one of the lowest points in my life. I am not sure that life is worth living any longer.
I do appreciate the time everyone took to respond to me and will try to post labs when I have them in hand.
Thanks,
Cheryl
I will examine the info on sweating. I never had this symptom until I became severely ill with thyroid disease. Usually, when my meds are off, it starts again. But my brain is a fog. It is so much to sift through and I fear I have lost much of my cognitive ability and emotional stability.
Until next,
Cheryl
Until next,
Cheryl
Don't ever give up Cheryl! I know at times it hard but there is an answer and treatment out there someplace. You just have to find it along with a competent doctor even if you have to travel to another state. I know of some who did that for the first diagnose then was treated by phone from home thereafter. You deserver the best, we all do. Not knowing your levels but you sound like you might need another RAI because of the hyper symptoms. The weight lose alone. That is what got me into doctors and treatment for Graves' was all the weight lose, like you I lost to under a 100 lbs and couldn't stop losing. But RAI stopped the weight loss and saved my life because I know I would be dead way before now.
Insist that your doctor recommend you to a competent doctor, scream, holler, have a tantrum, whatever it takes. Its your money, your body and your health.
Keep us posted, Good Luck and Feel Better Soon!
Insist that your doctor recommend you to a competent doctor, scream, holler, have a tantrum, whatever it takes. Its your money, your body and your health.
Keep us posted, Good Luck and Feel Better Soon!
Hi,
I was getting off the computer but thought I would check for a response. I was given a large dose of RAI, because my doctor didn't even give a dose. The aim was to destroy. It has been confirmed that I have no thyroid by many. I remember it took so long after RAI to hypo. When I did, my TSH was 140. I had the same symptoms then as I do now.
I have even gone hypo within the last year and had the same symptoms I am listing. I know it is strange, but my body has always been weird. My TSH was between 1 and 2 off memory last time. Free T4 was 1.13. Not sure about Free T3. In some ways, I wish it was that tissue was left behind, but I doubt it because I have gone too hypo even with meds.
Anyway, when I have concrete labs, I will let you know. I went to Mayo, because no one believed me in Oregon. $1,300 for travel/lodging for a $30 test. And then, they didn't believe the test. I came back here and even with a 54% uptake, the docs didn't take it seriously and one suggested doing nothing. I wish I could have let her feel how I have felt for almost 7 years now. I am trying to hang on, but my life seems so useless. I don't seem all that important in my kids' lives. I feel like a total failure and have become almost totally housebound. I don't have a lot of money. My spouse hasn't worked in over 3 years because of my inability to care for my own children. I feel so guilty and so broken down.
Thanks for caring though.
Cheryl
I was getting off the computer but thought I would check for a response. I was given a large dose of RAI, because my doctor didn't even give a dose. The aim was to destroy. It has been confirmed that I have no thyroid by many. I remember it took so long after RAI to hypo. When I did, my TSH was 140. I had the same symptoms then as I do now.
I have even gone hypo within the last year and had the same symptoms I am listing. I know it is strange, but my body has always been weird. My TSH was between 1 and 2 off memory last time. Free T4 was 1.13. Not sure about Free T3. In some ways, I wish it was that tissue was left behind, but I doubt it because I have gone too hypo even with meds.
Anyway, when I have concrete labs, I will let you know. I went to Mayo, because no one believed me in Oregon. $1,300 for travel/lodging for a $30 test. And then, they didn't believe the test. I came back here and even with a 54% uptake, the docs didn't take it seriously and one suggested doing nothing. I wish I could have let her feel how I have felt for almost 7 years now. I am trying to hang on, but my life seems so useless. I don't seem all that important in my kids' lives. I feel like a total failure and have become almost totally housebound. I don't have a lot of money. My spouse hasn't worked in over 3 years because of my inability to care for my own children. I feel so guilty and so broken down.
Thanks for caring though.
Cheryl
Have an Answer?
You are reading content posted in the Thyroid Disorders Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
