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Thyroid issues
I have a myriad of symptoms, but have received no real answer as to why from more docs and endocrinologists that I can count, involving my thyroid. TSH ALWAYS comes back "normal"; 24-hour urine test came back "normal"; I have 2 or more goiters on my thyroid; I was one of the 'radiation babies' back in the 40's for an enlarged thymus gland; I have had and still have substancial hair loss; moodiness; tired, mostly around 2 or 3pm and HAVE to take a nap; substantial weight gain and still gaining no matter how hard I diet; psoriasis for years; aches and pains; and just found out I have a Vitamin D deficiency. I was on and off Thyroid medication for many years, and am finding it next to impossible to find a reason 'why' nothing has been found out even though, as I said, I have seen many doctors. I am at my wit's end with nowhere to turn. PLEASE HELP!
As a writer, I found your letter to be a very good one containing all the necessary information. Firm, yet subtle and in good taste, it let's him know that I won't take no for an answer; so yes, I'll use it. It's funny -- I can write letters to whomever, about whatever and give perfectly sound advice at times -- except when it comes to myself.
Thanks for the tip -- I'll stay in touch.
1jammer
Thanks for the tip -- I'll stay in touch.
1jammer
Are you going to use the letter? Just curious. And no, I'm not a lawyer.
Your mention of lawyers and sharks reminded me of a joke I heard. Why won't sharks bite lawyers? Professional courtesy.
Good luck to you. Please keep us tuned in.
Your mention of lawyers and sharks reminded me of a joke I heard. Why won't sharks bite lawyers? Professional courtesy.
Good luck to you. Please keep us tuned in.
Man! Are you a lawyer or what?? Right when I've dealt with the 'sharks', and convinced myself there's nothing I can do about them and just take my chances, you come up with another idea. LOL I'm usually the type who doesn't like to make waves (or enemies), but when I'm backed against the wall, I will fight; so, I guess this means I should "give it one last try."
I haven't really given up because I've known something's been wrong for a very long time, but you can only be knocked down so many times before you throw in the towel. And since they have the 'powers that be' to decide whether or not to give needed medications, we are at their mercy. At this point it's either fight or flight; and before I'm thrown in jail for cold-cocking a doctor for being a jerk and hearing only what he wants to hear, I will try it one more time, with your article suggestions and my gut-feelings to back me up.
Hang on kids -- it's gonna be a bumpy ride.
I haven't really given up because I've known something's been wrong for a very long time, but you can only be knocked down so many times before you throw in the towel. And since they have the 'powers that be' to decide whether or not to give needed medications, we are at their mercy. At this point it's either fight or flight; and before I'm thrown in jail for cold-cocking a doctor for being a jerk and hearing only what he wants to hear, I will try it one more time, with your article suggestions and my gut-feelings to back me up.
Hang on kids -- it's gonna be a bumpy ride.
Judi, I hate to see you stop after all this effort. I would give it one more try. Since the new doctor is at least willing to read your letter and call you, I would not give up quite yet. I think I would go in and get them to run new tests for FT3 and FT4 and of course they always run TSH. After you get a copy of the results, then post them here and let members comment.
Then I would make copies of this checklist of hypo symptoms and mark the ones you have. http://www.altsupportthyroid.org/tsh/tshmedrefs2.php
Then I would also make copies of these.
http://www.altsupportthyroid.org/tsh/tshmedrefs2.php
http://www.hormonerestoration.com/Thyroid.html
Then I would send copies to the doctor, along with the following:
Dear Dr. ____,
I thank you for your time and interest to date. You may be my last resort to getting some of my problems fixed and having a more enjoyable life. I understand your reaction to my lab results. My symptoms and my TSH don't seem to match; however, I have learned that TSH is a pituitary hormone that is affected by many variables and does not correlate very well at all with hypo symptoms. I am also aware that the old range for TSH (.5-5.0) was recommended to be changed over 6 years ago to .3-3.0. This change was due to screening out suspect hypo and hyper patients from the data base, and recalculating the limits. I also know that TSH is not a good diagnostic. At best it is only an indicator of thyroid state. From what I have read, hypothyroidism correlates best with FT3 and slightly with FT4.
The data bases for FT3 and FT4 have never been adjusted like TSH and still include lots of suspect hypo and hyper patients. If the data bases for FT3 and FT4 were adjusted like the TSH range, it would result in much higher ranges for these actual thyroid hormones that regulate metabolism and many other body functions. I'm sure that is the reason so many of us suffer with hypo symptoms even when we are slightly within the lower limits of the reference ranges for FT3 and FT4. If the range for FT3 were adjusted comparable to TSH, for example, it would probably change from 2.3-4.2, up to 3.2-4.3 With the currently unadjusted ranges, the lower you are in the range, the greater the probability of being hypo. I strongly believe this is the main reason that I have all these hypo symptoms.
To me, test results within the low limit of the current reference ranges for the "Frees" should not be considered as a reason to do nothing further. Instead, the ranges should be used as a guide, within which to adjust the levels as required to alleviate symptoms. If being within the low limit is acceptable, then why isn't it just as acceptable to take medication and move up within the range to at least the average level, in order to alleviate symptoms?
I know that you mentioned the possibility of affecting the heart rate. I can see no real risk to this if we start on low dosage of meds and move up slowly and monitor results carefully. I also understand about the issue of osteoporosis. If I were already in a bone loss situation, increasing metabolism would make it go faster. But this is a problem that should be addressed as a separate issue, not by withholding thyroid meds.
As you can tell I am quite determined to improve my quality of life, by ridding myself of what I think are clearly hypo symptoms. I would appreciate it very much if you would find some time to read through the articles I have given you and consider what I have said above, and consider putting me on a therapeutic dosage of thyroid meds and monitor the effects very closely with me. I think it would be of great possible benefit to me, without any significant risk.
Thank you very much,
Judi ____
Then I would make copies of this checklist of hypo symptoms and mark the ones you have. http://www.altsupportthyroid.org/tsh/tshmedrefs2.php
Then I would also make copies of these.
http://www.altsupportthyroid.org/tsh/tshmedrefs2.php
http://www.hormonerestoration.com/Thyroid.html
Then I would send copies to the doctor, along with the following:
Dear Dr. ____,
I thank you for your time and interest to date. You may be my last resort to getting some of my problems fixed and having a more enjoyable life. I understand your reaction to my lab results. My symptoms and my TSH don't seem to match; however, I have learned that TSH is a pituitary hormone that is affected by many variables and does not correlate very well at all with hypo symptoms. I am also aware that the old range for TSH (.5-5.0) was recommended to be changed over 6 years ago to .3-3.0. This change was due to screening out suspect hypo and hyper patients from the data base, and recalculating the limits. I also know that TSH is not a good diagnostic. At best it is only an indicator of thyroid state. From what I have read, hypothyroidism correlates best with FT3 and slightly with FT4.
The data bases for FT3 and FT4 have never been adjusted like TSH and still include lots of suspect hypo and hyper patients. If the data bases for FT3 and FT4 were adjusted like the TSH range, it would result in much higher ranges for these actual thyroid hormones that regulate metabolism and many other body functions. I'm sure that is the reason so many of us suffer with hypo symptoms even when we are slightly within the lower limits of the reference ranges for FT3 and FT4. If the range for FT3 were adjusted comparable to TSH, for example, it would probably change from 2.3-4.2, up to 3.2-4.3 With the currently unadjusted ranges, the lower you are in the range, the greater the probability of being hypo. I strongly believe this is the main reason that I have all these hypo symptoms.
To me, test results within the low limit of the current reference ranges for the "Frees" should not be considered as a reason to do nothing further. Instead, the ranges should be used as a guide, within which to adjust the levels as required to alleviate symptoms. If being within the low limit is acceptable, then why isn't it just as acceptable to take medication and move up within the range to at least the average level, in order to alleviate symptoms?
I know that you mentioned the possibility of affecting the heart rate. I can see no real risk to this if we start on low dosage of meds and move up slowly and monitor results carefully. I also understand about the issue of osteoporosis. If I were already in a bone loss situation, increasing metabolism would make it go faster. But this is a problem that should be addressed as a separate issue, not by withholding thyroid meds.
As you can tell I am quite determined to improve my quality of life, by ridding myself of what I think are clearly hypo symptoms. I would appreciate it very much if you would find some time to read through the articles I have given you and consider what I have said above, and consider putting me on a therapeutic dosage of thyroid meds and monitor the effects very closely with me. I think it would be of great possible benefit to me, without any significant risk.
Thank you very much,
Judi ____
Thank you both for offering me such good advice. I did take the advice about asking for the Free T3, beginning me on thyroid medication and monitoring me, etc., and presented it to my endocrinologist. He did call me to tell me he'd read the letter just one day later, which was surprising in itself! In any case, he said he COULD do the Free T3, but as he'd told me the results of the other tests were normal, along with the urine tests (for hormonal disturbances among others), and believes I need Vitamin B-12 shots every 2 weeks. "They will help with your thinning hair and give you energy." He also said that If he gives me thyroid medication, it can "do bad things" like causing my heartbeat to race, as well as cause other organ problems.
Look guys, If so many endocrinologists say I am actually normal, then I must be; and am merely grabbing at straws with this possible hypothyroid thing, even though I was hypo (off and on) since 1770-something. I believe that maybe I'm so consumed with BEING hypothyroid, that I am not facing facts. Six endocrinologists and 5 doctors can't be all wrong -- can they??? But thanks so much for listening. At least I can rest easier -- even though it WAS obviously all in my head -- because others are suffering too and not being heard.
I'll continue to look in on the forum, as so many good things have come out of this, and I've learned much!
Thanks again. Good luck and God Bless everyone.
1jammer
Look guys, If so many endocrinologists say I am actually normal, then I must be; and am merely grabbing at straws with this possible hypothyroid thing, even though I was hypo (off and on) since 1770-something. I believe that maybe I'm so consumed with BEING hypothyroid, that I am not facing facts. Six endocrinologists and 5 doctors can't be all wrong -- can they??? But thanks so much for listening. At least I can rest easier -- even though it WAS obviously all in my head -- because others are suffering too and not being heard.
I'll continue to look in on the forum, as so many good things have come out of this, and I've learned much!
Thanks again. Good luck and God Bless everyone.
1jammer
I did take your suggestion seriously and read the link you provided, 2 times to get the most out of it. I also wondered if Vit D deficiency was related to hypothyroidism, yes -- and I "thought" the doc would get back to me with SOMEthing -- however, I have not heard a word from him even after asking his staff to have him contact me when he had free time so that I could speak with him about additional tests, etc.
He really seemed genuinely caring, especially when he noticed how thin my hair was; my psoriasis; the fact that I bruise easily (always did); the tiredness; moodiness; swollen ankles; large (and getting larger!) stomach; weight gain (seemingly daily!); diabetes -- ALL of it -- and though he personally called me with the "NORMAL" results of the TSH and Urine tests, he suggested nothing more and offered to do no further testing or anything. Although I thought he was "the one" doctor I could rely on, it seems I have been duped again. I will try one or more of the docs in PA because I know you said I shouldn't quit, but enough is enough already.
He really seemed genuinely caring, especially when he noticed how thin my hair was; my psoriasis; the fact that I bruise easily (always did); the tiredness; moodiness; swollen ankles; large (and getting larger!) stomach; weight gain (seemingly daily!); diabetes -- ALL of it -- and though he personally called me with the "NORMAL" results of the TSH and Urine tests, he suggested nothing more and offered to do no further testing or anything. Although I thought he was "the one" doctor I could rely on, it seems I have been duped again. I will try one or more of the docs in PA because I know you said I shouldn't quit, but enough is enough already.
No other tests -- just the TSH and T4 -- never mentioned the T3 or any other. Just received word about the Vit D deficiency and he put me on medication. Other than that, no other word from him.
Why On again Off again medications? I was diagnosed with hypothyroidism back in ' 73 & was put on Synthroid. It did help at the time, and symptoms began disappearing, as well as my losing 35 lbs. Was told after 4th son was born in ' 76 that my thyroid righted itself & I was taken off medication. In the '80's my then PCP said my TSH was "normal". When I mentioned that ALL my symptoms had returned and then some, he commented that he would not give me thyroid medication TO LOSE WEIGHT. (Apparently that is all he heard among my myriad of symptoms). While on vacation I saw his associate for an illness; he ran tests; put me back on Synthroid. Went to PCP for routine check-up about 6 or 9 mos or so later, and he took blood tests and said my thyroid was fine and immediately took me off the medication again.
At this point in time I am on nothing but Rx Vit. D
1jammer
Why On again Off again medications? I was diagnosed with hypothyroidism back in ' 73 & was put on Synthroid. It did help at the time, and symptoms began disappearing, as well as my losing 35 lbs. Was told after 4th son was born in ' 76 that my thyroid righted itself & I was taken off medication. In the '80's my then PCP said my TSH was "normal". When I mentioned that ALL my symptoms had returned and then some, he commented that he would not give me thyroid medication TO LOSE WEIGHT. (Apparently that is all he heard among my myriad of symptoms). While on vacation I saw his associate for an illness; he ran tests; put me back on Synthroid. Went to PCP for routine check-up about 6 or 9 mos or so later, and he took blood tests and said my thyroid was fine and immediately took me off the medication again.
At this point in time I am on nothing but Rx Vit. D
1jammer
Judi, I would like to again post the message I gave you previously.
"Even though your TSH is within the range, it does not preclude hypothyroidism. TSH is a pituitary hormone that is affected by many variables, including what time of day they draw blood for the test. Much more reliable are the actual, active thyroid hromones, FT3 and FT4, which cause the biological activity in the body. Of these, FT3 is the most important because it is four times as potent as FT4, and it correlates best with hypo symptoms. TSH does not correlate very well at all with hypo symptoms.
Even though your FT4 was in the very low end of its range, that only means there is a great likelihood of being hypo. The reference ranges for the "Frees" are based on a large data base of patients. It is supposed to represent euthyroid, or "normal" patients and the limits are statistically determined to exclude the highest 2.5% (supposedly hyper), and the lower 2.5% (supposedly hypo). In actuality, there are a lot more hypo and hyper patients than that total of 5%, so the range actually includes hypo, euthyroid, and hyper patients. In addition to that huge error in the ranges, everyone has a different level at which they feel their best. So, the range should be considered as just a guide, not as an infallible diagnostic. If you haven't read that link I gave you, I highly recommend that you do. It will help clear up a lot.
In my firm opinion, the very best way to treat a patient is to listen to symptoms and test and adjust the FT3 and Ft4 levels with meds, as required to relieve those symptoms. That's what it really is all about---symptoms, not TSH. And the ranges for FT3 and FT4 are only valuable as a guide within which to adjust the levels as necessary.
So you need to beat your doctor into submission on this approach, or you need to find a good thyroid doctor. We'll be glad to try and help with that if you will post what area you are in."
Have you discussed with your doctor the need for FT3 and FT4 tests? Have you discussed the need for FT3 and FT4 to be adjusted into the upper part of their ranges to alleviate symptoms? Did you know that Vitamin D deficiency is often associated with hypothyroidism? When your TSH is low in the range, along with low T4 it may indicate a need to evaluate pituitary function as well. If your current doctor won't change his approach and do all these things for you, it is way past time to find a good thyroid doctor.
"Even though your TSH is within the range, it does not preclude hypothyroidism. TSH is a pituitary hormone that is affected by many variables, including what time of day they draw blood for the test. Much more reliable are the actual, active thyroid hromones, FT3 and FT4, which cause the biological activity in the body. Of these, FT3 is the most important because it is four times as potent as FT4, and it correlates best with hypo symptoms. TSH does not correlate very well at all with hypo symptoms.
Even though your FT4 was in the very low end of its range, that only means there is a great likelihood of being hypo. The reference ranges for the "Frees" are based on a large data base of patients. It is supposed to represent euthyroid, or "normal" patients and the limits are statistically determined to exclude the highest 2.5% (supposedly hyper), and the lower 2.5% (supposedly hypo). In actuality, there are a lot more hypo and hyper patients than that total of 5%, so the range actually includes hypo, euthyroid, and hyper patients. In addition to that huge error in the ranges, everyone has a different level at which they feel their best. So, the range should be considered as just a guide, not as an infallible diagnostic. If you haven't read that link I gave you, I highly recommend that you do. It will help clear up a lot.
In my firm opinion, the very best way to treat a patient is to listen to symptoms and test and adjust the FT3 and Ft4 levels with meds, as required to relieve those symptoms. That's what it really is all about---symptoms, not TSH. And the ranges for FT3 and FT4 are only valuable as a guide within which to adjust the levels as necessary.
So you need to beat your doctor into submission on this approach, or you need to find a good thyroid doctor. We'll be glad to try and help with that if you will post what area you are in."
Have you discussed with your doctor the need for FT3 and FT4 tests? Have you discussed the need for FT3 and FT4 to be adjusted into the upper part of their ranges to alleviate symptoms? Did you know that Vitamin D deficiency is often associated with hypothyroidism? When your TSH is low in the range, along with low T4 it may indicate a need to evaluate pituitary function as well. If your current doctor won't change his approach and do all these things for you, it is way past time to find a good thyroid doctor.
COMMUNITY LEADER
What other thyroid tests are they doing besides TSH? TSH is actually a pituitary hormone, so in order to find out if you have thyroid issues, you need to have also a minimum of Free T4 and Free T3, along with the TSH. Free T4 and Free T3 are the actual thyroid hormones and are the best indicators regarding your thyroid.
Why have you been on and off thyroid meds?
Why have you been on and off thyroid meds?
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