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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
90 Responses
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Avatar universal
Dear Cheryl,

I think that jenipeni is offering very good advice. As a nursing student, she is working in medical settings. In years gone by, when I was a nurse's aide, I worked in medical settings, so I recognize the truth of what jenipeni says: Physicians are not very good at communicating/coordinating care. I suppose that we should be generous in our analysis and say that heavy workloads are part of the reason, but jenipeni was pointing in the right direction, I think, when she said "Ego?" Yes, physicians are at high risk for having inflated egos, which leads to the "No one can tell me anything" thinking (something I think becomes reflexive rather than conscious).

During the time just before and just after my hypothyroidism was diagnosed, my morale was taking a pounding from some of my experiences in medical offices. I have done much better since settling into an arrangement in which I have a rheumatologist and endocrinologist who provide most of my care. They both treat me with respect and concern, and they both listen closely to me. They know each other and think highly of each other, which cannot hurt. Then I have a primary care physician who is amazingly humble and human. She seems happy to be everyone's go-between. She orders whatever tests or procedures the other two physicians request. She also made it possible, per my request, for the results of thyroid-related lab tests (including blood sugar and blood lipids) to be released to me the instant that the results come back from the lab. I do not have to wait for my primary care physician to review the results and then release them to me.

Then I make sure that every physician has a copy of every result. I also make sure when I see one of the physicians to give him an update on what the other one said the last time I saw him. I also have learned to do lots of "Where I have been and where I am now" reminding, or at least to be ever-prepared to do that when the physician's comments tell me that a reminder is needed. As hard as a physician tries to remember the details of your difficulties by looking at your chart, it is not easy.

In short, I have learned to be my own care coordinator. Taking on that role can do several helpful things, including giving you a feeling of some control over your situation (which is far better than feeling that physicians are walking all over you while you are helpless to do anything about it).  This only works if you have a pair of physicians like mine, but it sounds as if you do. I am impressed and quite amazed that your OB/Gyn gave a lot of thought to your difficulty and also corresponded with your surgeon. (Then to spend two hours with you...that says a lot about his concern.) It is true that neither your OB/Gyn nor your surgeon is an endocrinologist, but when you have physicians who are concerned about you and willing to devote both time and thought to you, it can lead ultimately to answers even if the difficulty is not within the physicians' area of expertise.

As a next step, jenipeni's other piece of advice is very good. I was a little startled when I saw your list of medications, although during the time when you posted the list, I was a combination of too overloaded with demands at work and too cognitively fuzzy (dratted thyroid gland) to put my thoughts into words and express them. Now jenipeni has done a much better job than I would have done anyway. Regarding jenipeni's comment "By Australian standarards you are taking a very high dose of Klonopin," the same is true of the Valium you take. It seems as if a medication review would be a good idea, and as jenipeni indicated by giving you homework, you should start by carrying out your own review.

I have homework for you, too. If you did not read the comments posted to this thread by "mertoo" (at the end of January), go back and read them carefully. You might want to ask the two physicians whose concern you can count on--even though they are not endocrinologists--whether they think that Cushing's disease has been absolutely, positively ruled out. Looking at the website resources mentioned by mertoo could give you enough information to have it make sense to your physicians that you have a lingering question. I have a lingering question, after reading mertoo's comments.

Let me close by echoing two of jenipeni's comments: I hope that you will feel less alone by getting our messages. Like jenipeni, I have been logging on for a quick peek every so often, but without any time to post anything. Nevertheless, I HAVE been thinking about you, with caring and concern.

The other of jenipeni's comments I want to echo: Please be pro-active. I know how extremely hard it is to be your own advocate and fight for yourself accordingly, when you feel as unwell and discouraged as you do, but it is the only way to reach a better place, both physically and emotionally. It sounded like trite advice when it was given to me more than once in my past, and it sounds trite now, but I have learned through experience that the advice is sound.

Jenipeni, I am so sorry that your husband needed to have a filling the day before his surgery, and now you need a pricey piece of dental work yourself. What is that saying about it never rains but what it pours?! I hope that at least your husband is having a smooth post-surgical course of recovery, and I hope that your organizing project is going well. How well I remember my student years and how important it was to feel that my home life was sorted out and well organized before being swept away by the "tornado" of a new semester.

My best wishes to you both,
Jenny  

Helpful - 0
173351 tn?1201214057
Dear Cheryl,

I am sorry your appointment with the new endo was not what you were hoping for.  

What I say next may come across quite bluntly but I don't know of a gentler way to say it.  Please just make a choice out of your current doctor's caring for you - Cut down to only one or two at the very most.  Doctors are not terribly good at communicating/co-ordinating care between other health care professionals (Ego?).  The other thing is that when you see many doctors, they begin to be a bit wary of you - thinking you could be doctor shopping.  

Besides - you will get better continuation of care seeing one regular doctor.  Your OB-GYN sounds like a good one to stick with...  hormone replacement looks promising?  Fingers crossed for you.

The new post you started has moved to page two (I think, could be page three by now?).

I have been away longer than anticipated - I had to go to our home town (3 hours drive away) to get hubby to the dentist and ended up staying 2 days instead of 1.  The day before his carpal tunnel was done he lost a filing.  I had an overdue checkup and found one of my filings had cracked so I must either get a crown or have it pulled.  It's one of my molars, and I've had a few pulled already and think I should keep this one (for chewing's sake) IF we can come up with the $1300 for the crown : (
It was nice to get away and stay with family anyway.

I don't see my gyno until March, so no more news on that front just yet.  

Cheryl, are you still taking the Remeron?  I hope you are.  If you are still on the same dose and feeling so down please see your doctor to review your dosage.  

I reviewed what medications you are taking (posted 1/21/2007).  Valium and Klonopin are both benzodiazepines (class of drug, you may be familiar with).  By Australian standarards you are taking a very high dose of Klonopin-but surely the prescribing doctor had reasons for this. Interestingly One of the adverse reactions of benzo's can be decreased libido.  Usually benzo's should only be prescribed for short periods and used with caution for someone who suffers from depression or psychotic disturbances.

I have some homework for you;
Go to:

http://www.rxlist.com/

Now look up each of the medications you take and print out the information.

I think you may find that some of your symptoms such as fever (which covers your sweats and chills) are a side effect or adverse reaction to some of your medications.

See what you think...

Anyone with chronic health conditions should have their medications reviewed by their doctor regularly - maybe it's time to do that.

I start uni again this week and with all that's happening, I am still trying to get myself organised.  We are in for some very hot weather the next few days so at least I'll be forced to stay indoors and hopefully get things done.

I hope you feel less alone by getting this message.  I have logged on for a quick peek a few times but didn't have the time to post.  Still thinking of you though.

Please be pro-active and make an appointment to review the Remeron and perhaps all your other med's too.
Remember; Tommorrow will be a new day and you can leave this one behind.
Best wishes Cheryl,
jenipeni
Helpful - 0
173351 tn?1201214057
Dear Cheryl,

I am sorry your appointment with the new endo was not what you were hoping for.  

What I say next may come across quite bluntly but I don't know of a gentler way to say it.  Please just make a choice out of your current doctor's caring for you - Cut down to only one or two at the very most.  Doctors are not terribly good at communicating/co-ordinating care between other health care professionals (Ego?).  The other thing is that when you see many doctors, they begin to be a bit wary of you - thinking you could be doctor shopping.  

Besides - you will get better continuation of care seeing one regular doctor.  Your OB-GYN sounds like a good one to stick with...  hormone replacement looks promising?  Fingers crossed for you.

The new post you started has moved to page two (I think, could be page three by now?).

I have been away longer than anticipated - I had to go to our home town (3 hours drive away) to get hubby to the dentist and ended up staying 2 days instead of 1.  The day before his carpal tunnel was done he lost a filing.  I had an overdue checkup and found one of my filings had cracked so I must either get a crown or have it pulled.  It's one of my molars, and I've had a few pulled already and think I should keep this one (for chewing's sake) IF we can come up with the $1300 for the crown : (
It was nice to get away and stay with family anyway.

I don't see my gyno until March, so no more news on that front just yet.  

Cheryl, are you still taking the Remeron?  I hope you are.  If you are still on the same dose and feeling so down please see your doctor to review your dosage.  

I reviewed what medications you are taking (posted 1/21/2007).  Valium and Klonopin are both benzodiazepines (class of drug, you may be familiar with).  By Australian standarards you are taking a very high dose of Klonopin-but surely the prescribing doctor had reasons for this. Interestingly One of the adverse reactions of benzo's can be decreased libido.  Usually benzo's should only be prescribed for short periods and used with caution for someone who suffers from depression or psychotic disturbances.

I have some homework for you;
Go to:

http://www.rxlist.com/

Now look up each of the medications you take and print out the information.

I think you may find that some of your symptoms such as fever (which covers your sweats and chills) are a side effect or adverse reaction to some of your medications.

See what you think...

Anyone with chronic health conditions should have their medications reviewed by their doctor regularly - maybe it's time to do that.

I start uni again this week and with all that's happening, I am still trying to get myself organised.  We are in for some very hot weather the next few days so at least I'll be forced to stay indoors and hopefully get things done.

I hope you feel less alone by getting this message.  I have logged on for a quick peek a few times but didn't have the time to post.  Still thinking of you though.

Please be pro-active and make an appointment to review the Remeron and perhaps all your other med's too.
Remember; Tommorrow will be a new day and you can leave this one behind.
Best wishes Cheryl,
jenipeni
Helpful - 0
Avatar universal
Well,

Long story short, this endo is definitely not going to be helpful.  She came right out and told me that she did not see what she could do about my sweats with chills, seemed to think everything was fine based on my labs and mainly TSH.  She also said that she didn't see where she could help with hormone (female hormone) replacement.  This is a short version of the appointment.

I have been extremely upset, and that is putting it mildly, before and after that appointment.  I have been hanging in there for a long time, but I really feel that if this is the life I have to look forward to, I am not strong enough for it.  I called my OB-GYN.  After a lot of thought and correspondence with my surgeon, he believes that I might be going into ovarian failure.  He says that my testosterone is definitely low and my estrogen is particularly low for someone who is 36.  Now the decision is how to replace.  There is a lot more to this.  I was in his office for almost 2 hours talking with him.  He was at least concerned and had put thought into this.

Where I am right now is in a place I have never found myself.  I couldn't find the area where I started a new post, so I thought I would post here.

I might not be around.  I haven't cared about much of anything lately.  I have appreciated having the support I was able to get.  At the end of the day, I feel so alone.

I do hope you all are doing well.

Cheryl
Helpful - 0
Avatar universal
Hi there,

I have to read your post with a more fresh mind.  It is clear to me that testosterone (low) is involved at this point.  What I worry about is adequate replacement.  Less is known about Testosterone replacement in women.

I undestand not always being able to be available.  With my kids, I also, will be more busy.

It is frustrating to not have an answer, but the testosterone did show through.  In addition, vasomotor symtoms are associated with female hormone problems.  My absence of libido and aversion to sex go along with the testosterone issue.  

I want to write more, but I am tired.  If I get you right Jenny, as estrogen goes up, this TBG also does.  What I am taking from it is that your thyroid hormone binds and so you have less active hormone (free T4).  I wonder if simple fluctuations in my body could be causing the same reaction.  It would explain the ups and downs.  I would be interested to see what Jenipeni thinks about low testosterone.  I know you aren't a doctor, so I am not pressuring you, but sometimes a thought helps in ways we don't expect.

I am thinking of both of you and hope wellness will reach all of us.

I will try to write more tomorrow.  I will check off and on for you guys.  Thanks for the kind words, thought out writing, and good vibes for the new endo appt.

I moved this thread and I hope you will notice it.  It is on page 1.  I have difficulty finding our thread at this time.
Helpful - 0
Avatar universal
Dear Cheryl & jenipeni,

I feel the same way jenipeni does when she looks at Cheryl
Helpful - 0
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