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 Jenny,
You are so kind to repay one compliment with another. Thank-you from the bottom of my heart. Funny how things come along just as you need them isn't it? Same happened for me when I read your thread. Thank-you again. I hope your days soon become less taxing.
Thanks to both Jenny and Cheryl for the kind wishes for hubby and I. It's seems we are going through a 'patch' right now. Hubby's hand is well and truly on the improve, although I wish I could say the same for his job - not happy times at the mo' but I won't go there. I'm going back to the dentist in a month for the completion of my crown, we bit the bullet and killed our budget. Next week is my first consultation with the gyno, fingers crossed. In the meantime I've had a bad bout of internal haemorroids for the last 3 weeks. At least that's what I hope it is. It's lasted too long so I'm off to see my normal GP too! It never rains but it pours (and we are in drought) LOL!!!
Studies are just beginning to gain momentum, got my first assignment already.
To Cheryl
Glad to see you're still around, I was beginning to wonder if we'd lost you. I'm sorry you were bothered by the use of the word 'proactive' - I just know that when feeling down and you're not well it can be really hard to muster the strength to keep at it. I had really hoped to encourage you in saying it when I did.
I'm curious if there has been any association between your low testosterone and your leaky breasts? Soooo glad for you that you are about to begin treatment soon. It will be interesting to see if the testosterone cream has an effect on your breast discharge anyway. And I hope that the insurance company comes to the party for you too.
I understand your thinking in your explanation for why you don't think it is your medications causing some of your symptoms. Even so... our bodies and the reactions we have to different foods and medications change over time. People have been known to develop alergies or reactions to medications they have taken for a long time - I'm not saying you have an allergy, just using this example to make my point. So while you are probably right, I still don't think your medications can be ruled out altogther. Did you look up each of your medications and look at their side effects?
I've not heard of 'dysautonomic function' - I'll have to look it up when I have time. I continue to like everything your OB says...
The Armour conversation was on 2/21 and is titled 'Is anyone on Armour?' - at the time of this post it was on page 2.
Good to hear from you both, best wishes with beginning testosterone and estrogen therapies Cheryl. I hope it works out.
Cheers
Jenipeni
You are so kind to repay one compliment with another. Thank-you from the bottom of my heart. Funny how things come along just as you need them isn't it? Same happened for me when I read your thread. Thank-you again. I hope your days soon become less taxing.
Thanks to both Jenny and Cheryl for the kind wishes for hubby and I. It's seems we are going through a 'patch' right now. Hubby's hand is well and truly on the improve, although I wish I could say the same for his job - not happy times at the mo' but I won't go there. I'm going back to the dentist in a month for the completion of my crown, we bit the bullet and killed our budget. Next week is my first consultation with the gyno, fingers crossed. In the meantime I've had a bad bout of internal haemorroids for the last 3 weeks. At least that's what I hope it is. It's lasted too long so I'm off to see my normal GP too! It never rains but it pours (and we are in drought) LOL!!!
Studies are just beginning to gain momentum, got my first assignment already.
To Cheryl
Glad to see you're still around, I was beginning to wonder if we'd lost you. I'm sorry you were bothered by the use of the word 'proactive' - I just know that when feeling down and you're not well it can be really hard to muster the strength to keep at it. I had really hoped to encourage you in saying it when I did.
I'm curious if there has been any association between your low testosterone and your leaky breasts? Soooo glad for you that you are about to begin treatment soon. It will be interesting to see if the testosterone cream has an effect on your breast discharge anyway. And I hope that the insurance company comes to the party for you too.
I understand your thinking in your explanation for why you don't think it is your medications causing some of your symptoms. Even so... our bodies and the reactions we have to different foods and medications change over time. People have been known to develop alergies or reactions to medications they have taken for a long time - I'm not saying you have an allergy, just using this example to make my point. So while you are probably right, I still don't think your medications can be ruled out altogther. Did you look up each of your medications and look at their side effects?
I've not heard of 'dysautonomic function' - I'll have to look it up when I have time. I continue to like everything your OB says...
The Armour conversation was on 2/21 and is titled 'Is anyone on Armour?' - at the time of this post it was on page 2.
Good to hear from you both, best wishes with beginning testosterone and estrogen therapies Cheryl. I hope it works out.
Cheers
Jenipeni
Hi guys,
I have finally had the time to get on for a quick post. I have been busy trying to get my insurance to pay for the testosterone cream, because it is a compound. I hope I succeed, but am going to have to pay whether they do or not. My testosterone is very low. They did a repeat test. After talking with my OB, I wrote a letter to the endo who was rude to me. I told her what he had explained to me about my perimenopausal symptoms. She agreed (after this) that testosterone replacement and estrogen replacement should be done. Funny how when another doc called her on it, she changed everything she was saying. I don't think I will be seeing her again, and hope that the other endo will be better, but I didn't want to slam the door shut to someone who might be the last endo in this area.
I understand what you were both trying to say about how doctors perceive "doctor shopping." What I have done is to simply not tell my PCP if I am going for what I refer to as an "interview" with a perspective doctor. This way, it isn't in my notes and they will not likely cross paths. It would be difficult for my doctor to bring up doctor shopping to me, because she is not authorized to talk to physicians that I see unless she refers me to them. It wasn't you guys, but rather I am tired of hearing those two words. Unfortunately, today, there are more bad docs than good ones. That is a reality. You are right that it is difficult to understand and communicate by writing. I don't want you to be afraid to talk to me. I also was a little bothered by the use of the words "being proactive" in my care, mainly because I am so proactive in my care. But it is difficult for you guys to know every aspect of my life.
My question about the meds was one that I wanted to know about prior to seeing these doctors, because I wanted to know if I should bring them up. I ended up talking to my therapist/friend, and she told me that she did not think I should bring up any psych med for obvious reasons. Believe me, I have thought about the possibility of whether the Valium, Klonopin, etc. could be the cause. But I was on these for a long time without these symptoms. However, I still want to reduce my Valium, Klonopin, and pain meds to the lowest dose. The most recent nurse practitioner I saw told me that she believed I would need to stay on the 45 mg of hydrocodone. If the testosterone/estrogen help with the symptoms (sometimes anxiety, sweats, and on and on), I probably will be able to lower the doses of my other meds.
But as for those drugs causing the symptoms, I don't believe so. The reason is really simple. I was put on these higher doses to control the symptoms that I am currently having. Without the meds, I would be much worse. I hope that helps explain.
With regard to Addison's disease, the endos I have spoken to categorically do not believe I have that disease. When no tumors were found on the abdomenal CT Scan and no tumors were found in my brain with the MRI, they decided that I do not have a pituitary problem nor an adrenal one. I know that it is possible I do have a problem that wasn't picked up by these radiologic studies, but the endos I have seen examined all of the tests by urine, blood, and radiology, and that is their conclusion. My OB doesn't believe that a glandular problem can be ruled out with tests alone, but he says his hands are tied due to not being an endo. Hopefully, the endo I am seeing in April will run further tests to be sure that I don't have a gland problem that is being missed. There are other tests that can be run, but not many.
I had a thought recently. Fibromyalgia patients often have dysautonomic function. When I first was diagnosed with Graves', OHSU Fibromyalgia Clinic wanted to run a tilt-table test on me to see if this might be the case. I was too ill then. The nurse practitioner who wanted this also was surprised at how high my IGF-1 blood test came back. I had one run about a week ago. It was on the high end again. This is unusual in fibro patients.
Anyway, enough for the night. I did wonder what the discussion of Armour was about.
I am thinking of both of you and hoping you are recovering well,
Cheryl
I have finally had the time to get on for a quick post. I have been busy trying to get my insurance to pay for the testosterone cream, because it is a compound. I hope I succeed, but am going to have to pay whether they do or not. My testosterone is very low. They did a repeat test. After talking with my OB, I wrote a letter to the endo who was rude to me. I told her what he had explained to me about my perimenopausal symptoms. She agreed (after this) that testosterone replacement and estrogen replacement should be done. Funny how when another doc called her on it, she changed everything she was saying. I don't think I will be seeing her again, and hope that the other endo will be better, but I didn't want to slam the door shut to someone who might be the last endo in this area.
I understand what you were both trying to say about how doctors perceive "doctor shopping." What I have done is to simply not tell my PCP if I am going for what I refer to as an "interview" with a perspective doctor. This way, it isn't in my notes and they will not likely cross paths. It would be difficult for my doctor to bring up doctor shopping to me, because she is not authorized to talk to physicians that I see unless she refers me to them. It wasn't you guys, but rather I am tired of hearing those two words. Unfortunately, today, there are more bad docs than good ones. That is a reality. You are right that it is difficult to understand and communicate by writing. I don't want you to be afraid to talk to me. I also was a little bothered by the use of the words "being proactive" in my care, mainly because I am so proactive in my care. But it is difficult for you guys to know every aspect of my life.
My question about the meds was one that I wanted to know about prior to seeing these doctors, because I wanted to know if I should bring them up. I ended up talking to my therapist/friend, and she told me that she did not think I should bring up any psych med for obvious reasons. Believe me, I have thought about the possibility of whether the Valium, Klonopin, etc. could be the cause. But I was on these for a long time without these symptoms. However, I still want to reduce my Valium, Klonopin, and pain meds to the lowest dose. The most recent nurse practitioner I saw told me that she believed I would need to stay on the 45 mg of hydrocodone. If the testosterone/estrogen help with the symptoms (sometimes anxiety, sweats, and on and on), I probably will be able to lower the doses of my other meds.
But as for those drugs causing the symptoms, I don't believe so. The reason is really simple. I was put on these higher doses to control the symptoms that I am currently having. Without the meds, I would be much worse. I hope that helps explain.
With regard to Addison's disease, the endos I have spoken to categorically do not believe I have that disease. When no tumors were found on the abdomenal CT Scan and no tumors were found in my brain with the MRI, they decided that I do not have a pituitary problem nor an adrenal one. I know that it is possible I do have a problem that wasn't picked up by these radiologic studies, but the endos I have seen examined all of the tests by urine, blood, and radiology, and that is their conclusion. My OB doesn't believe that a glandular problem can be ruled out with tests alone, but he says his hands are tied due to not being an endo. Hopefully, the endo I am seeing in April will run further tests to be sure that I don't have a gland problem that is being missed. There are other tests that can be run, but not many.
I had a thought recently. Fibromyalgia patients often have dysautonomic function. When I first was diagnosed with Graves', OHSU Fibromyalgia Clinic wanted to run a tilt-table test on me to see if this might be the case. I was too ill then. The nurse practitioner who wanted this also was surprised at how high my IGF-1 blood test came back. I had one run about a week ago. It was on the high end again. This is unusual in fibro patients.
Anyway, enough for the night. I did wonder what the discussion of Armour was about.
I am thinking of both of you and hoping you are recovering well,
Cheryl
Thank you, Jenipeni, for your kind words about my Armour-related comments! I especially appreciated the pat on the back because the inquiry about Armour came right in the middle of a hectic time at work, so it was difficult for me to find the time to put my thoughts into words. It is gratifying to think that it was worth eking out the time for, and if there is anyone's judgment I trust, it is yours.
In fact, I think so highly of YOUR thinking that a pat on the back feels doubly good when coming from you. The past few days have been bad ones in regard to my thyroid problem--bad for reasons that are understandable, but bad days are taxing to go through even if they are an expectable part of the getting-better process. Consequently, it was really nice to get an upbeat note from you, and that would have been true even if it did not contain a compliment! I hope that you are holding your own, that your new term in school is off to a good start, and that your husband is doing well, post-surgically.
Cheryl, I hope that you are holding your own, too. I have been thinking of you often.
Best wishes to you both,
Jenny
In fact, I think so highly of YOUR thinking that a pat on the back feels doubly good when coming from you. The past few days have been bad ones in regard to my thyroid problem--bad for reasons that are understandable, but bad days are taxing to go through even if they are an expectable part of the getting-better process. Consequently, it was really nice to get an upbeat note from you, and that would have been true even if it did not contain a compliment! I hope that you are holding your own, that your new term in school is off to a good start, and that your husband is doing well, post-surgically.
Cheryl, I hope that you are holding your own, too. I have been thinking of you often.
Best wishes to you both,
Jenny
Hi Cheryl
EmpatheticJenny captured my thoughts exactly (thanks for that Jenny!) - I am not angry and do not wish you any grief or burden from mis-communication. I appologise if you thought that I was labelling you as a 'doctor shopper' - this was not my intention (rather only to say what many in the medical profesion are quick to label people as, which you already know).
I have not been able to follow what doctors you see and for what - maybe it's just my brain fuzz. It doesn't matter any way, you are the only one who really needs to know what's going on. And you're an intelligent woman by any measure.
I must applogise because when I commented on your dose of the Klonopin I missed the decimal point! So you see, my mistake - and a big one. ALSO (on paper) I thought your symptoms better fit the description for Addison's disease rather than Cushings.
If you don't think the Remeron is the best one for you then why don't you go back to the prescribing doctor and work with them until you find a better one for you. It is depressing having Chronic illness and while medications can help, they won't cure the depression because they don't sort out the rest of our medical problems all in one hit. You are in a hard place.
That review of your current medications still seems relevent to me though.
I agree with EmpatheticJenny - and to use some of her words - that in the present circumstances, (the distance, the fact we are not qualified medical professionals AND the enormity and complexity of your medical problems) it is clear to me now that I ALSO should limit myself to wishing you well and not offer you any further advice.
So I will finish in saying this - YOU know your body better than anyone will ever know it, hence YOU will have the most tuned in idea of what the hell is going on with it (with the relevant information/education of course).
Best wishes with everything Cheryl.
sincerely,
jenipeni
TO EMPATHETIC JENNY,
Loved your recent post about Amour - go girl!!!
EmpatheticJenny captured my thoughts exactly (thanks for that Jenny!) - I am not angry and do not wish you any grief or burden from mis-communication. I appologise if you thought that I was labelling you as a 'doctor shopper' - this was not my intention (rather only to say what many in the medical profesion are quick to label people as, which you already know).
I have not been able to follow what doctors you see and for what - maybe it's just my brain fuzz. It doesn't matter any way, you are the only one who really needs to know what's going on. And you're an intelligent woman by any measure.
I must applogise because when I commented on your dose of the Klonopin I missed the decimal point! So you see, my mistake - and a big one. ALSO (on paper) I thought your symptoms better fit the description for Addison's disease rather than Cushings.
If you don't think the Remeron is the best one for you then why don't you go back to the prescribing doctor and work with them until you find a better one for you. It is depressing having Chronic illness and while medications can help, they won't cure the depression because they don't sort out the rest of our medical problems all in one hit. You are in a hard place.
That review of your current medications still seems relevent to me though.
I agree with EmpatheticJenny - and to use some of her words - that in the present circumstances, (the distance, the fact we are not qualified medical professionals AND the enormity and complexity of your medical problems) it is clear to me now that I ALSO should limit myself to wishing you well and not offer you any further advice.
So I will finish in saying this - YOU know your body better than anyone will ever know it, hence YOU will have the most tuned in idea of what the hell is going on with it (with the relevant information/education of course).
Best wishes with everything Cheryl.
sincerely,
jenipeni
TO EMPATHETIC JENNY,
Loved your recent post about Amour - go girl!!!
Hi, Cheryl--
I think I am safe in speaking for jenipeni as well as for myself in saying that NO, of course we are not angry. As I read your latest comments, I felt only distress as I realized that perhaps we seemed to be saying that we saw you as a doctor "shopper," which is very, very far from the message that we both intended to send. If you look at my January 14th comments about the term "doctor shopping," you will know that nothing could have been farther from my mind in regard to you and your recent, extraordinary difficulties.
Especially when going through extraordinarily difficult times, it can be quite painful when communication goes awry. Your most recent post has made me realize that all three of us have been overlooking a hazard of communicating in writing, across a great distance, with someone we do not know. Although neither jenipeni nor I responded quickly to this part of your January 21st post: "I am going to tell you the medicines I am on so you can try to be a doctor--a judgmental one perhaps--for me. I know you are not judgmental, so please try to be for my sake. Here is the list:," when we did respond, we unintentionally made matters worse for you, not better, I think.
The reason was a lack of context. This is the hazard of long-distance communications between and among strangers. Even though you have provided an extensive amount of information about your medical history to date, jenipeni and I lack the context of your life as a whole--all of your history and all of your present circumstances. If we had known you for quite some time, or if we were close to you geographically and could talk face-to-face, we either would have a sense of the complex bunch of information that forms the context of your life, or else we could get a sense of it relatively quickly.
In the present circumstances, though, it is all too easy for communication to go awry which--as I mentioned in the paragraph before last--could be quite painful for you. It is such a help during difficult times to feel understood, but conversely, it can add a lot to a person's burdens to feel misunderstood. Adding to your burdens is the last thing in the world that either jenipeni or I would want to do, and again, I think I am safe in speaking for her as well as for me.
I am sorry that I had to come to this realization the hard way, meaning: at your expense. At least it is clear to me now that I should limit myself to wishing you well and not offer you any advice.
I DO wish you well. I am hoping and praying that the endocrinologist you have not yet seen will turn out to be the sort of rational and caring physician you have had SUCH a difficult time finding in the area of endocrinology.
Sincerely,
Jenny
I think I am safe in speaking for jenipeni as well as for myself in saying that NO, of course we are not angry. As I read your latest comments, I felt only distress as I realized that perhaps we seemed to be saying that we saw you as a doctor "shopper," which is very, very far from the message that we both intended to send. If you look at my January 14th comments about the term "doctor shopping," you will know that nothing could have been farther from my mind in regard to you and your recent, extraordinary difficulties.
Especially when going through extraordinarily difficult times, it can be quite painful when communication goes awry. Your most recent post has made me realize that all three of us have been overlooking a hazard of communicating in writing, across a great distance, with someone we do not know. Although neither jenipeni nor I responded quickly to this part of your January 21st post: "I am going to tell you the medicines I am on so you can try to be a doctor--a judgmental one perhaps--for me. I know you are not judgmental, so please try to be for my sake. Here is the list:," when we did respond, we unintentionally made matters worse for you, not better, I think.
The reason was a lack of context. This is the hazard of long-distance communications between and among strangers. Even though you have provided an extensive amount of information about your medical history to date, jenipeni and I lack the context of your life as a whole--all of your history and all of your present circumstances. If we had known you for quite some time, or if we were close to you geographically and could talk face-to-face, we either would have a sense of the complex bunch of information that forms the context of your life, or else we could get a sense of it relatively quickly.
In the present circumstances, though, it is all too easy for communication to go awry which--as I mentioned in the paragraph before last--could be quite painful for you. It is such a help during difficult times to feel understood, but conversely, it can add a lot to a person's burdens to feel misunderstood. Adding to your burdens is the last thing in the world that either jenipeni or I would want to do, and again, I think I am safe in speaking for her as well as for me.
I am sorry that I had to come to this realization the hard way, meaning: at your expense. At least it is clear to me now that I should limit myself to wishing you well and not offer you any advice.
I DO wish you well. I am hoping and praying that the endocrinologist you have not yet seen will turn out to be the sort of rational and caring physician you have had SUCH a difficult time finding in the area of endocrinology.
Sincerely,
Jenny
Hi,
I have not been on at all. I reviewed the posts and I know that you both have big hearts, but I want to respond to a couple of things. I have only tried to get to an endocrinologist, because my doctors are resistant to treating me since I have thyroid disease. My OB is still concerned, and it is being proactive that has gotten me through the many struggles over the years. The doctors I am seeing could not possibly be bothered by me looking for an endo, because it was their desire that an endo handle one. Both the surgeon and OB. I love my docs, but they are tossing me around.
I had to convince my OB to do something about my hormonal imbalance through being proactive. I kept him late because I felt that talking was a must at this point in my life. My surgeon is a sweetie, and I also talked extensively with him, convincing him of the necessity of doing something about the hormones. This is what finally pushed him to fax his thoughts to my OB. So, I am definitely not sitting on my hands.
I hope you are angry with me for being frank, but I am tired of the words doctor shopping. They absolutely can terminate you and write inaccuracies in your records without any reprieve. It follows you. Today, I found a nurse practioner. She wasn't ideal but much better than my PCP. However, she wants all of my records. My records contain innacuracies, untruths, and have things in them that are confidential by my standards. I liked that this nurse practitioner saw the need for the control of pain in fms patients.
As for the Klonopin, in the states, .25 mg is considered nothing. It is one-half of a tablet. That is a story in and of itself. My doctors put me on 1 mg of Klonopin 3 X daily and 10 mg of Valium 3 X daily when I had Graves'disease. Sometimes, they raised the Valium dose to control the strong movement and symptoms from Graves. After RAI, I slowly weaned myself to where I am at now. It has been difficult to do so. I also came off of the 50 mcg Duragesic patch to the 45 mg of Vicodin I am on now. It was difficult, and I found out later that the drops I was doing because my doctor didn't help me come off of the Klonopin or Valium could have killed me. I lucked out on that one. I have discussed my dose of Valium with my doctor and Klonopin. All doctors are of the opinion that this has nothing to do with those meds. My OB said that the hormonal fluctuations are in his mind the definite cause, especially since I lack a uterus. This causes hormonal imbalance in the body. He also said that because I am so thin, my body does not produce estrogen from the adipose tissue or fat, I think. I have read about this. I am still trying to make decisions about the estrogen, and I believe I am going to try low-dose Estrogel and Testosterone at .2% compounded. We are waiting to see if the insurance is going to pay. I am a bit worried about what implications this has for my thyroid, but I believe that hormones are the issue. The doctors have said that there are no tumors and Cushings is not being considered. But they also say they aren't endos. I have one last endo to see. Nobody knows about these appointments. That way there is no talking about me "doctor shopping." As far as the pituitary, I believe that there is involvement, but it is a theory of mine. I believe that the hypothalamus, pituitary, and adrenals are all a little out of commission, but it is nothing that is showing on the tests. Hopefully, the hormone treatment works. Maybe it will give my body a break and me some quality of life.
Another thing . . . I was on Klonopin .5 mg 3 X daily before any of these symptoms came on. I was on it for 5 years. I never had this. I don't believe that it is related. However, perhaps if hormonal imbalance is causing anxiety, etc., I will be able to lower the dose. I do not think I could handle the withdrawal from those drugs right now. I am still lowering the Klonopin slowly. I will be off of it soon. But my house can't turn up-side-down. It is hard enough on the kids. It is sad to me that they chose to use those drugs instead of something like Mirapex for the movement. But honestly, everyone's body is different. I think they did what they needed to for me at the time. Valium/Klonopin are used to control rls.
I hope I don't sound abrupt, but I feel so many things right now. I haven't even looked at the computer. It doesn't seem necessary to me. As for the Remeron, I wish I never started it. It has worsened the restless legs syndrome, and it is contraindicated for restless legs syndrome as are all SSRI drugs. I know they aren't in the same category. My depression and anxiety are from chronic medical illness. Before I got pregnant, I went off of everything except two benign drugs during pregnancy. These symptoms were happening even when I was on nothing.
By the way, no one believes that the estrogen is going to affect my thyroid. I am glad I had the heads up on that one. If I had my way, I would have estriol compounded with lower levels of estradiol and estrone. But I have to start somewhere.
Anyway, I do hope you are well. To Jenipeni, I hope you and your husband are doing well. To Jenny, I hope things are looking up for you.
Good night,
Cheryl
I have not been on at all. I reviewed the posts and I know that you both have big hearts, but I want to respond to a couple of things. I have only tried to get to an endocrinologist, because my doctors are resistant to treating me since I have thyroid disease. My OB is still concerned, and it is being proactive that has gotten me through the many struggles over the years. The doctors I am seeing could not possibly be bothered by me looking for an endo, because it was their desire that an endo handle one. Both the surgeon and OB. I love my docs, but they are tossing me around.
I had to convince my OB to do something about my hormonal imbalance through being proactive. I kept him late because I felt that talking was a must at this point in my life. My surgeon is a sweetie, and I also talked extensively with him, convincing him of the necessity of doing something about the hormones. This is what finally pushed him to fax his thoughts to my OB. So, I am definitely not sitting on my hands.
I hope you are angry with me for being frank, but I am tired of the words doctor shopping. They absolutely can terminate you and write inaccuracies in your records without any reprieve. It follows you. Today, I found a nurse practioner. She wasn't ideal but much better than my PCP. However, she wants all of my records. My records contain innacuracies, untruths, and have things in them that are confidential by my standards. I liked that this nurse practitioner saw the need for the control of pain in fms patients.
As for the Klonopin, in the states, .25 mg is considered nothing. It is one-half of a tablet. That is a story in and of itself. My doctors put me on 1 mg of Klonopin 3 X daily and 10 mg of Valium 3 X daily when I had Graves'disease. Sometimes, they raised the Valium dose to control the strong movement and symptoms from Graves. After RAI, I slowly weaned myself to where I am at now. It has been difficult to do so. I also came off of the 50 mcg Duragesic patch to the 45 mg of Vicodin I am on now. It was difficult, and I found out later that the drops I was doing because my doctor didn't help me come off of the Klonopin or Valium could have killed me. I lucked out on that one. I have discussed my dose of Valium with my doctor and Klonopin. All doctors are of the opinion that this has nothing to do with those meds. My OB said that the hormonal fluctuations are in his mind the definite cause, especially since I lack a uterus. This causes hormonal imbalance in the body. He also said that because I am so thin, my body does not produce estrogen from the adipose tissue or fat, I think. I have read about this. I am still trying to make decisions about the estrogen, and I believe I am going to try low-dose Estrogel and Testosterone at .2% compounded. We are waiting to see if the insurance is going to pay. I am a bit worried about what implications this has for my thyroid, but I believe that hormones are the issue. The doctors have said that there are no tumors and Cushings is not being considered. But they also say they aren't endos. I have one last endo to see. Nobody knows about these appointments. That way there is no talking about me "doctor shopping." As far as the pituitary, I believe that there is involvement, but it is a theory of mine. I believe that the hypothalamus, pituitary, and adrenals are all a little out of commission, but it is nothing that is showing on the tests. Hopefully, the hormone treatment works. Maybe it will give my body a break and me some quality of life.
Another thing . . . I was on Klonopin .5 mg 3 X daily before any of these symptoms came on. I was on it for 5 years. I never had this. I don't believe that it is related. However, perhaps if hormonal imbalance is causing anxiety, etc., I will be able to lower the dose. I do not think I could handle the withdrawal from those drugs right now. I am still lowering the Klonopin slowly. I will be off of it soon. But my house can't turn up-side-down. It is hard enough on the kids. It is sad to me that they chose to use those drugs instead of something like Mirapex for the movement. But honestly, everyone's body is different. I think they did what they needed to for me at the time. Valium/Klonopin are used to control rls.
I hope I don't sound abrupt, but I feel so many things right now. I haven't even looked at the computer. It doesn't seem necessary to me. As for the Remeron, I wish I never started it. It has worsened the restless legs syndrome, and it is contraindicated for restless legs syndrome as are all SSRI drugs. I know they aren't in the same category. My depression and anxiety are from chronic medical illness. Before I got pregnant, I went off of everything except two benign drugs during pregnancy. These symptoms were happening even when I was on nothing.
By the way, no one believes that the estrogen is going to affect my thyroid. I am glad I had the heads up on that one. If I had my way, I would have estriol compounded with lower levels of estradiol and estrone. But I have to start somewhere.
Anyway, I do hope you are well. To Jenipeni, I hope you and your husband are doing well. To Jenny, I hope things are looking up for you.
Good night,
Cheryl
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