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
Hi,
Well, after much waiting for a call back from my gynecologist (since January 27th), I heard from him tonight. He said that my testosterone levels were low. From what I remember, that is opposite what Jenipeni is experiencing. I wondered if this could account for all of the symptoms or just some.
I had a friend that had a problem where her body was converting estrogen into estrogen. I wondered if somehow there could be a connection between these two hormones. I know nothing about this. But I wondered if my testerone is low, could there be any interrelationship with estrogen levels going up and down.
Anyway, the gynecologist wanted an endo to deal with the testosterone issue. I told him that I did not yet have one, which is absolutely true, and that I wanted to start some sort of replacement if it were necessary. I am hoping everything goes well with the new endo and I do have a back-up. My gynecologist appeared concerned not so much with my recent breast imaging, but with that from 2 years ago showing a dialated duct. He, however, wanted to defer to his colleague, my surgeon. Perhaps some answers will be found.
I asked about estrogen, and he did say that the ups and downs in temperature can produce the temperature regulation problems--one minute hot and the next sweating and then chills.
I am praying for some answers that will lead to solutions.
By the way Jenipeni, the only reason I wanted anyone to look at some of my radiological reports is because I didn't understand some of the wording. It was more of a definition thing. I hope I didn't make you feel uncomfortable.
I am going to move this thread. It will be called Needing advice and some response, but I am restarting it. It has become to difficult for me to locate it.
I hope you are both feeling okay and hope to hear from you.
Cheryl
Well, after much waiting for a call back from my gynecologist (since January 27th), I heard from him tonight. He said that my testosterone levels were low. From what I remember, that is opposite what Jenipeni is experiencing. I wondered if this could account for all of the symptoms or just some.
I had a friend that had a problem where her body was converting estrogen into estrogen. I wondered if somehow there could be a connection between these two hormones. I know nothing about this. But I wondered if my testerone is low, could there be any interrelationship with estrogen levels going up and down.
Anyway, the gynecologist wanted an endo to deal with the testosterone issue. I told him that I did not yet have one, which is absolutely true, and that I wanted to start some sort of replacement if it were necessary. I am hoping everything goes well with the new endo and I do have a back-up. My gynecologist appeared concerned not so much with my recent breast imaging, but with that from 2 years ago showing a dialated duct. He, however, wanted to defer to his colleague, my surgeon. Perhaps some answers will be found.
I asked about estrogen, and he did say that the ups and downs in temperature can produce the temperature regulation problems--one minute hot and the next sweating and then chills.
I am praying for some answers that will lead to solutions.
By the way Jenipeni, the only reason I wanted anyone to look at some of my radiological reports is because I didn't understand some of the wording. It was more of a definition thing. I hope I didn't make you feel uncomfortable.
I am going to move this thread. It will be called Needing advice and some response, but I am restarting it. It has become to difficult for me to locate it.
I hope you are both feeling okay and hope to hear from you.
Cheryl
Hi,
Really short note. I understand you not being able to look over the diagnostic reports Jenipeni. I hope everything goes well with your husband's surgery and your endeavors.
I will try to be in touch again. I am glad you understand my frustration in wanting to know what is wrong.
I will keep an eye out for you.
Any thoughts on how to approach the new doc with all the normal tests but awful symptoms. Hi to both of you and I hope you are feeling okay. Anything new with you Jenipeni? The tests?
Thanks and thinking of both of you.
Cheryl
Really short note. I understand you not being able to look over the diagnostic reports Jenipeni. I hope everything goes well with your husband's surgery and your endeavors.
I will try to be in touch again. I am glad you understand my frustration in wanting to know what is wrong.
I will keep an eye out for you.
Any thoughts on how to approach the new doc with all the normal tests but awful symptoms. Hi to both of you and I hope you are feeling okay. Anything new with you Jenipeni? The tests?
Thanks and thinking of both of you.
Cheryl
Hi Cheryl & Jenny
Firstly thank-you both for the confidence you have in me - but all I have done is pass on information that others have written and researched. I don't think I can offer assitance with your radiologic reports/test results Cheryl- as a nurse we aren't taught diagnoses and it is not an area I have had any experience in. Sorry.
Cheryl I empathise with you that while you don't want terrible news from your test results, you still want to know what's going on so it can be fixed.
Next week my hubby is having a carpal tunnel op and the week after I am back at uni. Being my final year there will be a lot of stress and a huge workload, I must start studying now. So there are busy times ahead and I have to plan on scaling down my time on the forum.
In no way will this be my last post or anything but I just won't be around very often. I'm sure you'll both understand.
I wish you both happiness and health!
jenipeni
Firstly thank-you both for the confidence you have in me - but all I have done is pass on information that others have written and researched. I don't think I can offer assitance with your radiologic reports/test results Cheryl- as a nurse we aren't taught diagnoses and it is not an area I have had any experience in. Sorry.
Cheryl I empathise with you that while you don't want terrible news from your test results, you still want to know what's going on so it can be fixed.
Next week my hubby is having a carpal tunnel op and the week after I am back at uni. Being my final year there will be a lot of stress and a huge workload, I must start studying now. So there are busy times ahead and I have to plan on scaling down my time on the forum.
In no way will this be my last post or anything but I just won't be around very often. I'm sure you'll both understand.
I wish you both happiness and health!
jenipeni
One more quick note. You mentioned a Law of LaPlace. Is there a link you can lead me to for that. I want to research a bit more. This seems logical to me and I wonder if there could be a connection for me if my estrogen is fluctuating especially in an abnormal pattern. I got too many hits when I searched and I am looking for that info specifically.
Hope you are well.
Cheryl
Hope you are well.
Cheryl
Hi guys,
Well, the results are in and no tumors were found on either the pituitary, adrenals, or any gland.
With respect the my breasts, the right breast shows non-clustering microcalcifications with a rounded appearance. There are also multiple cysts and microcysts in the right breast. My mom is a breast cancer survivor and I am a little worried even though the radiologist said everything was fine. Three years before my mom's breast was removed, she also had something show up on her mammogram, a microcalcification--just one. They said everything was fine. They watched her every three years and the cancer had grown in the exact same spot that was fine until one doctor said (as three were arguing), "This is cancer." It is with this in mind that I want further studies of my breast done. Two procedures-a ductogram and ductal lavage-should be considered in my opinion. The notes from my mammogram say that because of the density of my breast tissue, it is possible a lesion could be present. I am aware that there are radiologic studies, and I believe, gamma ray breast imaging was mentioned. But I am not sure about the last one. I want my mom to come in with me to discuss this. I feel like the doctors think I am having fun with this. I don't want to avoid a procedure because it is painful. My mom was in pain for 6 months after they missed her cancer, which grew rapidly in the presence of estrogen. Then, they had to put her on Tomoxifen for five years putting her through chemically-induced menopause. She can never take estrogen again.
I love my surgeon, and I am thrilled that no tumors were found. I don't want that. But something is going on with me. I am afraid to start estrogen until an endocrinologist has been brought into the picture. I see one on February 14. My OB-GYN has not called me with the results of the female hormone panel despite a couple of calls. I requested my records and I hope they will be here soon. My surgeon thinks that I might need some estrogen, perhaps in the form of cream. I gave him what I showed you guys, because he asked me if I wanted him to call my OB-GYN. I wanted him to have all of the symptoms. What is weird is that my OB-GYN did not want to give me hormones and felt that they had nothing to do with my problems. I have a lot of respect for him also. I don't agree with everything he says, but who does. We are people. I have to believe that he thinks something is up in the endo system. But you know, the last endo I saw told me that none of the symptoms I was experiencing had anything to do with the endo system. He is full of ****, but you can see why I didn't go back.
The 24 hour cortisol with VMA came back within normal range. My prolactin also did. On a side note, I went to see my psychiatrist. She is not my favorite, but I wanted to know what she thought of the breast milk production and lack of sex drive. I told her my prolactin was normal. She told me that, in her opinion, if I am leaking breast milk, prolactin is too high for me. She said that my body has always been a little different when it came to everything. But this prolactin was really low. I asked her how she would treat it if she were going to. She said she would prescribe Bromocriptine (think I spelled that right). Below are the results that my doctor was "happy to report."
ACTH, ARUP 19 pg/mL range (6-58)
Prolactin 3.8 ng/mL range (2.8-29.2)
I am frustrated and yes depressed now, because I hoped that something would give me some answers. It reminds me of this Plymouth Reliant I had. Every time I took it to the mechanic and they hooked it up to diagnostic machines, everything came back normal. After several frustrating events, it happened on my way out of the lot one day. I went back and asked if everything was normal. The mechanic laughed and said no. They have felt, seen, and heard the symptoms.
I believe the chances of tumors in the brain or adrenals are not likely, but what I wonder is if there can still be a problem, but it just is in its infancy stages so to speak.
By the way, thanks for the explanation Jenny. That is what I thought you meant. I knew about the binding. It apparantly is also important that people have proper ferritin levels, but not to take them near to the time of taking thyroid replacement. I am considering asking the new endo if she will try T3 with my T4 in a low dose. A lot of people have had success with this. Something is messed up with the Hypothalamus/Pituitary/Adrenal Axis. I know my thyroid meds are not optimal, despite normal reads. The reason is that when I made the minor adjustments, I noticed a gradual improvement, reduction in sweating, increased functioning, and lower discharge from the breast. Not to mention that I have been able to interact with my kids.
I am down though. Again, I don't want tumors. I want answers. They didn't listen to me before any of the surgeries that I needed. I ended up with a gallbladder the size of my liver with a thick skin on it. The last stone (it was filled with them) got caught in the common duct. This caused the surgery to be over 2 hours long, instead of the normal 45 minutes. The had to make an incision to allow the last stone to pass out of the common duct. I was lucky I didn't have to get the long cut. Another doctor beleived me and sent me to the ER. I was breastfeeding twins at this time. I had experienced over 9 attacks, but all of the doctors were dismissive even though almost everyone in my family has lost their gallbladder. Twin pregnancy and pregnancy increase the chance of this problem as well as thyroid disease. With my history and symptoms, lots of things should have been caught. But I just want a life now. I want to feel the way I felt much of the last week.
There is a lot more I want to post on here, but not tonight.
To Jenipeni, it is interesting about the iodine therapy for the breasts. It has been around awhile. I feel for you with the difficulty in wanting children, but not feeling ready. The only thing I can tell you is I went through a lot of fertility procedures. If someone had told me that this is how sick I was going to become, I would have had my sister carry the baby. I did want to say that you should not feel like you have to start tomorrow. Yes, it is true that women have more difficulty after 35. But health issues can also cause problems as in my case. So, try to give yourself some room.
I am going to post more about the radiologic reports, but I am also making the daring move of posting my email address. I get a little lost on this site. There is also the option of using about.com's site. It has more options, but it can be confusing as well. Here it goes. My email address is ***@****. I know I am not supposed to do that, but I am taking the risk. My depression is bad and I don't always have the energy to get on here and search around. Also, I would like to scan in all of my reports and labs and possibly let others take a look, specifically you Jenipeni, since you are going into the medical field. But I also would be interested in anyone, like Jenny, who is very intelligent and possibly knows more than the doctors. I mean that.
Be in touch at least on the board.
You are in my thoughts,
Cheryl
Well, the results are in and no tumors were found on either the pituitary, adrenals, or any gland.
With respect the my breasts, the right breast shows non-clustering microcalcifications with a rounded appearance. There are also multiple cysts and microcysts in the right breast. My mom is a breast cancer survivor and I am a little worried even though the radiologist said everything was fine. Three years before my mom's breast was removed, she also had something show up on her mammogram, a microcalcification--just one. They said everything was fine. They watched her every three years and the cancer had grown in the exact same spot that was fine until one doctor said (as three were arguing), "This is cancer." It is with this in mind that I want further studies of my breast done. Two procedures-a ductogram and ductal lavage-should be considered in my opinion. The notes from my mammogram say that because of the density of my breast tissue, it is possible a lesion could be present. I am aware that there are radiologic studies, and I believe, gamma ray breast imaging was mentioned. But I am not sure about the last one. I want my mom to come in with me to discuss this. I feel like the doctors think I am having fun with this. I don't want to avoid a procedure because it is painful. My mom was in pain for 6 months after they missed her cancer, which grew rapidly in the presence of estrogen. Then, they had to put her on Tomoxifen for five years putting her through chemically-induced menopause. She can never take estrogen again.
I love my surgeon, and I am thrilled that no tumors were found. I don't want that. But something is going on with me. I am afraid to start estrogen until an endocrinologist has been brought into the picture. I see one on February 14. My OB-GYN has not called me with the results of the female hormone panel despite a couple of calls. I requested my records and I hope they will be here soon. My surgeon thinks that I might need some estrogen, perhaps in the form of cream. I gave him what I showed you guys, because he asked me if I wanted him to call my OB-GYN. I wanted him to have all of the symptoms. What is weird is that my OB-GYN did not want to give me hormones and felt that they had nothing to do with my problems. I have a lot of respect for him also. I don't agree with everything he says, but who does. We are people. I have to believe that he thinks something is up in the endo system. But you know, the last endo I saw told me that none of the symptoms I was experiencing had anything to do with the endo system. He is full of ****, but you can see why I didn't go back.
The 24 hour cortisol with VMA came back within normal range. My prolactin also did. On a side note, I went to see my psychiatrist. She is not my favorite, but I wanted to know what she thought of the breast milk production and lack of sex drive. I told her my prolactin was normal. She told me that, in her opinion, if I am leaking breast milk, prolactin is too high for me. She said that my body has always been a little different when it came to everything. But this prolactin was really low. I asked her how she would treat it if she were going to. She said she would prescribe Bromocriptine (think I spelled that right). Below are the results that my doctor was "happy to report."
ACTH, ARUP 19 pg/mL range (6-58)
Prolactin 3.8 ng/mL range (2.8-29.2)
I am frustrated and yes depressed now, because I hoped that something would give me some answers. It reminds me of this Plymouth Reliant I had. Every time I took it to the mechanic and they hooked it up to diagnostic machines, everything came back normal. After several frustrating events, it happened on my way out of the lot one day. I went back and asked if everything was normal. The mechanic laughed and said no. They have felt, seen, and heard the symptoms.
I believe the chances of tumors in the brain or adrenals are not likely, but what I wonder is if there can still be a problem, but it just is in its infancy stages so to speak.
By the way, thanks for the explanation Jenny. That is what I thought you meant. I knew about the binding. It apparantly is also important that people have proper ferritin levels, but not to take them near to the time of taking thyroid replacement. I am considering asking the new endo if she will try T3 with my T4 in a low dose. A lot of people have had success with this. Something is messed up with the Hypothalamus/Pituitary/Adrenal Axis. I know my thyroid meds are not optimal, despite normal reads. The reason is that when I made the minor adjustments, I noticed a gradual improvement, reduction in sweating, increased functioning, and lower discharge from the breast. Not to mention that I have been able to interact with my kids.
I am down though. Again, I don't want tumors. I want answers. They didn't listen to me before any of the surgeries that I needed. I ended up with a gallbladder the size of my liver with a thick skin on it. The last stone (it was filled with them) got caught in the common duct. This caused the surgery to be over 2 hours long, instead of the normal 45 minutes. The had to make an incision to allow the last stone to pass out of the common duct. I was lucky I didn't have to get the long cut. Another doctor beleived me and sent me to the ER. I was breastfeeding twins at this time. I had experienced over 9 attacks, but all of the doctors were dismissive even though almost everyone in my family has lost their gallbladder. Twin pregnancy and pregnancy increase the chance of this problem as well as thyroid disease. With my history and symptoms, lots of things should have been caught. But I just want a life now. I want to feel the way I felt much of the last week.
There is a lot more I want to post on here, but not tonight.
To Jenipeni, it is interesting about the iodine therapy for the breasts. It has been around awhile. I feel for you with the difficulty in wanting children, but not feeling ready. The only thing I can tell you is I went through a lot of fertility procedures. If someone had told me that this is how sick I was going to become, I would have had my sister carry the baby. I did want to say that you should not feel like you have to start tomorrow. Yes, it is true that women have more difficulty after 35. But health issues can also cause problems as in my case. So, try to give yourself some room.
I am going to post more about the radiologic reports, but I am also making the daring move of posting my email address. I get a little lost on this site. There is also the option of using about.com's site. It has more options, but it can be confusing as well. Here it goes. My email address is ***@****. I know I am not supposed to do that, but I am taking the risk. My depression is bad and I don't always have the energy to get on here and search around. Also, I would like to scan in all of my reports and labs and possibly let others take a look, specifically you Jenipeni, since you are going into the medical field. But I also would be interested in anyone, like Jenny, who is very intelligent and possibly knows more than the doctors. I mean that.
Be in touch at least on the board.
You are in my thoughts,
Cheryl
Hi Cheryl and Jenny
Just a quick note (I only have 10 minutes) I've been a bit quiet because my CT results are not definative - I have uterine fibroids and mildly enlarged ovaries BUT on a positive note everything else appears normal. That is apart from the high testosterone and cortisol. More tests are required but the GP is handballing me on the gynecologist. He suspects PCOS but the diferential diagnosis is possibly Cushing's.
Uterine fibroids are associated with decreased fertility - as is PCOS! Don't really want Cushing's either! Blah!!!
When discussing all this with hubby, he suggested that we should possibly start trying for a family sooner than planned. There may be sense in his suggestion, and fertility does naturally decreased past the age of 35 (in women). BUT I don't feel ready for kids yet - my health is not as good as it should be for one and I want to finish my degree and work a couple of years first!!!
Anyway when served with lemons, make lemonade! I'll just have to use it as extra motivation to try and shift the extra 25kgs I'm carrying around :(
I just wish I had more energy to do this... I hate being this heavy, until 4-5 years ago I had always been very slim.
This is all getting me a bit down - there's no proper diagnosis yet and it's all unfinished business hanging around. It gives me empathy for your situation Cheryl - though I havn't nearly been through all that you have.
Jenny, I totally agree with your take on the estrogen thing. And when you think about it - it shouldn't matter whether you have a functioning thyroid or not because the medication compensates for that.
Time's up - gotta go or I won't make it to my accupuncture appointment on time. I think it is helping some - but couldn't be 100% sure. This might be the last time because I can't really afford it and work didn't give me any hours next week (there was a misunderstanding, I'm not in trouble).
Oh by the way - I must make an apology to you guys. I made a mistake as I was unaware - iodine is actually being widely researched with the link to fibrocystic breast disease. Very interesting don't you think?
Really gotta go now...
Hope you are both well.
Jenipeni
Just a quick note (I only have 10 minutes) I've been a bit quiet because my CT results are not definative - I have uterine fibroids and mildly enlarged ovaries BUT on a positive note everything else appears normal. That is apart from the high testosterone and cortisol. More tests are required but the GP is handballing me on the gynecologist. He suspects PCOS but the diferential diagnosis is possibly Cushing's.
Uterine fibroids are associated with decreased fertility - as is PCOS! Don't really want Cushing's either! Blah!!!
When discussing all this with hubby, he suggested that we should possibly start trying for a family sooner than planned. There may be sense in his suggestion, and fertility does naturally decreased past the age of 35 (in women). BUT I don't feel ready for kids yet - my health is not as good as it should be for one and I want to finish my degree and work a couple of years first!!!
Anyway when served with lemons, make lemonade! I'll just have to use it as extra motivation to try and shift the extra 25kgs I'm carrying around :(
I just wish I had more energy to do this... I hate being this heavy, until 4-5 years ago I had always been very slim.
This is all getting me a bit down - there's no proper diagnosis yet and it's all unfinished business hanging around. It gives me empathy for your situation Cheryl - though I havn't nearly been through all that you have.
Jenny, I totally agree with your take on the estrogen thing. And when you think about it - it shouldn't matter whether you have a functioning thyroid or not because the medication compensates for that.
Time's up - gotta go or I won't make it to my accupuncture appointment on time. I think it is helping some - but couldn't be 100% sure. This might be the last time because I can't really afford it and work didn't give me any hours next week (there was a misunderstanding, I'm not in trouble).
Oh by the way - I must make an apology to you guys. I made a mistake as I was unaware - iodine is actually being widely researched with the link to fibrocystic breast disease. Very interesting don't you think?
Really gotta go now...
Hope you are both well.
Jenipeni
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