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251991 tn?1239296030

POLL/Neuropathy & Thyroid-Please Join

Ok I have decided to place a Poll on here myself.
How many of you out there have Neuropathy problems along with Thyroid? If you do give a breif description of the problems and what type of thyroid problem you have. If enough of us out there suffer from this then maybe the Endo's would relate to it, as we can print this out and take it to the Doctor with us. Thanks for participating.
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251991 tn?1239296030
They were listed 8/18 as the following, Please Help, second part and hold on I have to go reread the third one,lol.
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Avatar universal
Hi, Tina--

Thank you for your kind words, although I really do not think that I am out of the ordinary in the area of being smart. As I went through graduate school, I realized that all graduate school (including medical school) is just a form of trade school. People who go through it spend a lot of time being trained in research and how to think about it, which can make us seem a lot smarter than we are.

The reality is that we are a lot like electricians. We have learned a lot of detailed knowledge, and we went through a form of apprenticeship to learn how to use the details, but virtually anyone who is interested enough in the skills to want to spend a few years getting them can get through the trade school. It is the best-kept secret in the world, and it infuriates me. If the truth were spoken more often--that medical school is only trade school and not the big deal that we are led to believe it is--it might make it a little harder for the crummier physicians to relate to us patients in ways that are highly destructive.

Good for you for marching back to the office of the doctor you fired (and three cheers for you for firing the jerk, too!) and asking for copies of your lab results. The best thing we thyroid sufferers can do for ourselves is have a strong sense of ownership about our lab results, about information, and about any decisions that need to be made.

I am sorry to hear that you need to have surgery. My work has been very heavy this summer, so I have not been at the forum much, and I did not read about your history when you described it. Is there a date when you posted the details? If you could tell me that, and what subject header you used, I would like to read the background information that you have provided.

In regard to surgery and whether it takes away all the symptoms: People have such different experiences that I think it is difficult to predict. I know that it sounds sort of pathetic, but I mean it sincerely when I say: Don't give up hope, and hang in there! I have seen people at this forum write descriptions of intense suffering, and then a few months later, they were one of the people saying, "Hang in there; it DOES get better."

I just hope that you are in circumstances that make it possible for you to keep looking for a good endocrinologist. One thing I have learned at the forum is how common it is to need to try several times to find a good doc before finally finding one.

Thank you for the "take care" thought. You do the same!

With best wishes,
Jenny
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251991 tn?1239296030
Jenny you are a very smart person and give good understanding! Yes I think back in time of things that have happened to me also and wonder what my tsh levels were at that time. I am going to that doctors office tomorrow and asking for a copy of all my thyroid testing they done in the past and i am going to not try and scream at them while I am there, I think they know i already fired them along my way as i had all my records transfered to another place so they prolly hate me now since i am not there lil pig anymore, but the bad part is i really liked that nurse practioner even though she was demanding for 5 months to figure this all out on her own instead of turnig me over to higher athoritys.
Well her Boss the Doctor there that is never there except 1/2 day on Friday told her to stop seeing me and it was all in my head LMAO! Grrrrrr boy I was mad and I think she was to because she knows me and knows of all the 10 years I was seeing her I never came in for nothing unless I really needed to which started the pass 2 yrs. In ref. to Hydrocortisone now, my internal med doc said yes it can cause adema, my endo says NO, lol again, my last apt with him was 8am and i wasnt on my feet much before i went in so he saw no swelling of course and the other steroid u mentioned fludrocortisone, I was on that with the hydro in the hospital and they took me off it because my hands an feet were swelling and they saw it. You know that show on the disovery channel mystery diseases or something like that? I think we should call them and let them give us our diagnose, I wonder what the endos would think about that!  Everywhere I been they say your thyroid does do alot of wierd things! The Theropist, Orthapedic Group, Chiropractor, Neuroligist, now if they all seem to think that and know that then i guess they are smarter. For now i am just suffering with my feet I havent had much numbness and tingling lately so i wonder what my levels are now, i am scared to get surgery which i have to call tomorrow to make my preop appt., i dunno why i am so scared! But I guess it is best to get that nodule tested and see what they say. If I knew the surgery would take away all my missery I wouldnt care but I hear it doesn't take away all the symptoms. :(  Oh and yes I should of stated that different about neuropathy, we prolly would of had alot more responces. Talk to you later.......... Take care.
Tina
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Avatar universal
As I was saying, I just looked up my entire TSH-levels history. Here is is, beginning with the first time I had TSH assessed and ending with June of last year, when the endocrinologist I had started seeing diagnosed hypothyroidism:
9/2/97       2.4
11/28/00   1.58
1/5/01       2.46
1/4/02       2.46
4/30/03     3.32
7/23/04     2.93
9/30/05     2.85
6/6/06       4.11
As you can see, it is not a tidy picture at all. I had a high level of well-being from 1999 onward. Beginning in February of 2003, I began to have a strange symptom here and there, but the early symptoms did not really call for any treatment. They make more sense when looked at together than they did at the time, when they came and went one at a time. The first symptom was a ferocious attack of hives, but it came at the very end of a minor upper respiratory illness. The immune system can have that reaction to an illness, and the fact that I then continued to have a single hive every time I had the pressure of a deadline at work seemed like one of those "bodily mystery" sorts of things. A few months later, I began to have a Raynaud syndrome episode once in awhile. Raynauds syndrome (where either toes or fingers turn white in response to being chilled) becomes more common with age, for a reason that no one understands, but it seems harmless. Looking backward in time, those two symptoms all but shout "hypothyroidism," but I can understand why the physicians I was seeing missed the diagnosis. Then my TSH level went down again (at the same time that my level of work-related stress went up the scale a lot, so go figure).

The bottom line truth, I am afraid, is that the pattern any one person will follow is a lot more unpredictable than many physicians imply. I also suspect that the underlying mechanics are VERY poorly understood. The complexity that is involved is mind-boggling, too. I do not even try to understand fully the picture that my endocrinologist has of what is happening inside of me. I couldn't. Even my rheumatologist tells me that he is in over his head when trying to understand the endocrine system in the way that my endocrinologist understands.

...and to think that endocrine system problems are quite common! How does any of the essential work of the world get done, if so many of us are limping along with poorly understood aches and pains? I am afraid that I have been no help to you at all as you both limp along with your sets of aches and pains. If empathy helps, however, know that I feel tons of empathy for both of you!

Sincerely,
Jenny

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Avatar universal
Hi, folks--

Msfergy, it is infuriating that your thyroid gland was totally ignored at a time when it should have been the center of attention. Sometimes the medical care we get seems worse than no care at all.

In regard to your swollen ankles and feet: You might ask your doctor whether the swelling is related to the hydrocortisone you are taking. Two weeks ago, I started taking fludrocortisone. Let me say right away that it is a different creature from hydrocortisone, so I do not know if the actions of the two drugs are similar. My attention was grabbed, though, by your comment about your feet and ankles. Swollen ankles are one of two signs that my endocrinologist told me to watch for and tell him about it. In reading about the drug, I learned that it partly inhibits the kidneys' ability to excrete sodium. Apparently some patients are told that adhering to a low-sodium diet, in order to counterbalance their kidneys' less-effective sodium excretion, is a good idea. I am hugely grateful that I already have low-sodium-diet habits. I cannot imagine what it would do to my morale if I needed to reshape my dietary habits, on top of all the other stresses of having an uncomfortable case of hypothyroidism. Sticking to a low-sodium diet means figuring out strategies to compensate for the fact that we in the industrialized parts of the world take in an insane amount of salt. I am deeply grateful that I have the strategies worked out already and the dietary habits in place.

Anyway, I do not know if hydrocortisone has a similar effect on the kidneys, but it would be worth asking about. As for pain, there are days when I have a lot of it. This was true before I began taking fludrocortisone, so at least I know that there is no connection between it and my pain. It seems as if muscle pain that is irrational, meaning that it is all out of proportion to any stress I am putting on my body, is in some way caused by my endocrine system. I am not sure whether my struggling thyroid gland is the villain or whether it is a lack of estrogen that has caused the problem. Having irrational muscle pain began during the perimenopausal phase of my life. When I began taking an oral contraceptive as hormone replacement therapy, it made a dramatic difference in my pain. Once I began taking levothyroxine, I still needed to take estrogen (to prevent hot flashes, if for no other reasons), but the two drugs fought with each other like two kids in the back seat of a car. It took many, many weeks before my thyroid gland seemed to settle down, feel well supported by the medication, and not give me up-and-down difficulties. Since June, I have tolerated a reasonably high dose of estrogen again, and I am not having nearly as much muscle pain as I had.

It is ALL so complicated and interconnected, and here I would to bring LJ into the conversation. As you could tell from my last paragraph, I am indeed taking thyroxine in the form of synthetic levothyroxine ("synthetic" meaning synthesized in a laboratory; they use recombinant DNA technology to produce a drug that is chemically identical to what your thyroid gland produces--pretty cool, huh?).

Thank you for clarifying the term "neuropathy" for me. I am glad that you are going to see the neuro again to try to get an explanation of why our thyroid glands, when they are not keeping up with their workloads, can produce symptoms that are like the symptoms of neurological diseases. I would be very interested in knowing what the neuro says, although I am afraid that you may get only a reply of "Who knows?" to your questions. The underlying mechanics may be one of those areas of medicine in which there is a lot of speculation about why the correlations are what they are, but no real answers about mechanics. After beginning to see a rheumatologist for my muscle pain, and also to have him oversee a thorough assessment of my nervous system, I soon learned that one of my LEAST favorite phrases in the English language is "poorly understood."

In fact, I think that any physician who was honest would apply that phrase to what I have been through as a whole. I began having paresthesias somewhat dramatically thirteen years ago. Whatever is going on inside of me, it always has had its own internal logic about the timing with which symptoms have come and gone, and the logic has never made sense to me or to any of my physicians. The summer of 1994, I went through almost the entire summer with odd neurological symptoms every day. They were not severe enough to scare me seriously (I once worked as a nurse's aide on a neurological unit, so I had some points of comparison that were helpful). Still, the symptoms were quite odd and therefore unsettling.

Then the symptoms mostly went away, although I would have a quirky symptom every so often. I was in graduate school at the time, so my access to medical care was extremely limited. Every stereotype about university student health care definitely applied. I tried to stay out of the student health center as much as I could.

A year later, in the summer of 1995, I had the first relatively obvious symptoms of perimenopause. I had not heard the term at that point; I knew nothing about it, so I did not recognize my sleep disturbances as having a hormonal cause. I was already well into problems with muscle pain. By the next summer, in 1996, I was realizing that both muscle pain and sleep disturbances varied according to where I was in my menstrual cycle. The variation also was true to an extent with some of the "neurological" stuff, although the cause-and-effect connection was not quite as clear.

Eventually, when I was out of school and had access to decent medical care, the time came when my physicians and I blamed all of my symptoms on an unusually difficult and odd perimenopausal/menopausal phase. Now, looking backward in time, I do think that a falling level of estrogen was to blame for my sleep problems and for my muscle pain. For the most part, however, the neurological symptoms came and went on their own schedule, seemingly unaffected by hormone replacement therapy. I thought it was odd, but since I was healthy and energetic, I just shrugged it off as one of those bodily mysteries.

I now think that the first parathesias, in the summer of 1994, were the first sign that my thyroid gland was starting to struggle. The first time I had TSH assessed was the autumn of 1997. My level was 2.4. That would qualify as "normal" even today, when the upper end of "normal" is lower than it used to be. Then again, thanks to the training in research and statistics that I was in graduate school to get, I can understand why the author of a journal article I read predicted that some day, the upper end of normal for TSH will be 2.0.

Whether or not that happens, I think it is very odd that at the end of November in 2000, my TSH level was 1.58, and some of the most dramatic neurological "fireworks" of my life would burst forth about two weeks later and stay with me most of the time for many weeks. I know there can be a non-trivial amount of variation from a person's "true" TSH level at any one time of testing, but still... The weirdness I had at the end of 2000 and the very beginning of 2001 makes no more sense from the position of hindsight than it did at the time. I was doing beautifully on hormone replacement therapy--sleeping like a champion and having minimal muscle pain--and my TSH level seemingly was well within the normal range, even if the 1.58 happened to be lower than what my "true" level was at that time.

From that point onward, my TSH bobbed up and down the scale. I just looked up my entire TSH history, but I am going to stop here, post this much of my reply, and then post Part II, as I have received a warning that I have exceeded the 8,000-character limit....
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Avatar universal
Hi there.  So glad to here you are feeling better. I am only mildly hypo as well ,with my highest level being 6.81.  I was treated with RAI for hyperthyroid due to nodule.  I seemed to suffer transient hypo ,my levels have slowly come down .Last time I checked they were at 2,51 then I started synthroid ,then armour and stayed on 25 mcg for three months ,but it did not seem to help with paresthesias,you are right the term is actually paresthesias,but still neurological symptoms never the less, what I actually think the term is called is peripheral neuropathies .  Our tests that we have had done have ruled out central nervous system disorders so in the research that I have done we both seem to really fit into the category of peripheral neuropathy.Look it up if you have not already.   I do not think that  means that it is permenant nerve damage,but that they are caused by thyroid problems,and until our bodies ,tissues heal I think we continue to experience these symptoms.  eeg confirmed that my nervous system is working correctly,which I feel is very odd.    especially,when still suffering with these symptoms.  All day everyday for six months  You would think that eeg would show SOMETHING!! I am going in to see my neuro again to see if I can get a better  understanding of the correlation between peripheral neuropathies and thyroid .  

Last time I saw him he did not give me any clue to what he thought was causing them Just that he did not think it  was ms.

Also are you on any form of thyroxine now?? I am not ,but I am hoping that my levels will just keep going down and that I will adjust.

Jenny when you were having the paresthesias did you have them every day? What were your levels when they started??.


LJ39
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