Aa
So confused!
Hi everyone,
I am new to hypothyroidism and am so confused as to what my specific situation is. For the past two years since my son's birth, I had been treated for depression and fibromyalgia. All medications that I was on failed to provide relief of any symptoms. I had my TSH levels tested at least 5 times and I was told that everything was normal, despite my family history of thyroid disease and physical symptoms such as inability to lose weight, weight gain, constantly being tired, etc. I was never told that there was a full panel test for thyroid hormones until I finally did some research myself b/c I was sick and tired of taking meds that did absolutely nothing to help me. Two months ago, my results were TSH level at 1.64, free T4 at .92, and T3 @ 1.26. I did not get the actual lab test, only a letter from the doctor that only gave the lab range for the free T4 to be from .93 to 1.7. I was put on 25 mcg of levothyroxin and felt an improvement about a month after taking it. The doc asked that I have a retest which was done last week and at my office visit with him, I had mentioned that I had briefly felt some relief in my symptoms (which was SO GREAT) but had started to have extreme tiredness, etc to reappear again. He said that I may have to have a higher dose of thyroid meds and would evaluate my test results. I received a letter today that seriously frustrated me b/c he said that my TSH was .593 with normal levels being from .54 to 5.7 and he felt that was a normal level so would not adjust my dosage as of now. My question is: how can he base his decision on a test that NEVER revealed that I had a thyroid problem before? It doesn't appear that any of the individual levels that were tested to find my problem before were even tested for. Am I wrong by thinking that the particular levels that indicated the initial imbalance should be tested again to see the difference? Or is the TSH level test sufficient? I am seeing a family practice doc...should I take my referral that has been offered and see an endocrinologist? What do my numbers even mean on these tests? It was never explained to me fully. Sorry for all the questions...I just want to pursue this b/c I want to feel better!
I am new to hypothyroidism and am so confused as to what my specific situation is. For the past two years since my son's birth, I had been treated for depression and fibromyalgia. All medications that I was on failed to provide relief of any symptoms. I had my TSH levels tested at least 5 times and I was told that everything was normal, despite my family history of thyroid disease and physical symptoms such as inability to lose weight, weight gain, constantly being tired, etc. I was never told that there was a full panel test for thyroid hormones until I finally did some research myself b/c I was sick and tired of taking meds that did absolutely nothing to help me. Two months ago, my results were TSH level at 1.64, free T4 at .92, and T3 @ 1.26. I did not get the actual lab test, only a letter from the doctor that only gave the lab range for the free T4 to be from .93 to 1.7. I was put on 25 mcg of levothyroxin and felt an improvement about a month after taking it. The doc asked that I have a retest which was done last week and at my office visit with him, I had mentioned that I had briefly felt some relief in my symptoms (which was SO GREAT) but had started to have extreme tiredness, etc to reappear again. He said that I may have to have a higher dose of thyroid meds and would evaluate my test results. I received a letter today that seriously frustrated me b/c he said that my TSH was .593 with normal levels being from .54 to 5.7 and he felt that was a normal level so would not adjust my dosage as of now. My question is: how can he base his decision on a test that NEVER revealed that I had a thyroid problem before? It doesn't appear that any of the individual levels that were tested to find my problem before were even tested for. Am I wrong by thinking that the particular levels that indicated the initial imbalance should be tested again to see the difference? Or is the TSH level test sufficient? I am seeing a family practice doc...should I take my referral that has been offered and see an endocrinologist? What do my numbers even mean on these tests? It was never explained to me fully. Sorry for all the questions...I just want to pursue this b/c I want to feel better!
THANK YOU THANK YOU everyone for so generously sharing your knowledge and/or firsthand experience. Absolutely none of this was ever explained or clarified for me, and I feel like I was more or less shoved to the sidelines. Again, I am so grateful to each and every person who contributed to my post. Thank you to all! I'm going to pursue this further until hopefully some day soon I'll feel more like a 28 year old and less like an 80 year old who missed her afternoon nap. :-)
Your initial T4 number is WAY low. No wonder why he put you on a T4 med. he had to know that would bring your TSH down. And since you already had a low TSH but were clearly Hypo, it should not have surprised him that your TSH would be lower than before.
It is also pretty well known (by anyone who does much study on hypothyroidism which appears to be thyroid patients and almost none of the Doctors!) that when a person is on a strictly T4 medication (which you are on) it can suppress TSH. That means that TSH becomes even LESS reliable than it already is. And as mentioned above and by your own history, you have shown TSH to be worthless as it relates to YOU specifically. So that would be proof on top of proof that the Dr. should not be using TSH on you for treatment decisions. He should be looking at your symptom relief and something other than TSH.
From peoples history on this site. Most people tend to find relief when their Free T4 is about mid range and the free T3 is in the upper 1/3 of the range. Of course this varies from person to person.
Also symptoms tend to most accurately track the Free T's best. And that there is almost no correlation to TSH at least not in terms of fine tuning medication dosage. As a first flag TSH can be an indicator. But the "normal" TSH range is made up so that 95% of the general population fit into that range. The problem is that a much higher percentage of the population is either Hyper or Hypo Thyroid than 5% so that would be your case. Where you fall inside the so called "normal" range but are Hypo.
Finding a Dr. who is even willing to test for the Free T3 and Free T4 is difficult if not nearly impossible at least that is what I'm finding. THEN if you get them to agree to finally do the test, getting a Dr. who treats by ignoring TSH and using both Free's and your symptoms is the next nearly impossible feat. Most Dr's do exactly what yours did. Give meds, see the suppressed TSH, panic and take you off or reduce your meds. Which is crazy when you think about it. Think to your situation. Your Dr. was perfectly willing based on your clinical response and your symptoms to bump up your dosage. However the Magic TSH belief stopped him from changing the dosage. So his first (and most likely proper) inclination was to raise the medication level. Had he not taken the blood test he would have done that. And seen how your clinical response was. But he took the test and won't do what he really knows in his heart was the best course of action. he was swayed by the magic TSH conundrum!
My wife has had the same problem. The Dr. would finally increase the dosage, and she would go back, report that she is feeling better with the increased dosage, take a blood test and then lower her back to the previous level???? That is pure insanity! a 2 year old should be able to figure out that if you change something and the situation improves to continue doing what you changed to. In fact one would then logically figure that changing in that same direction may further result in improvement. Make the change and then see what happens. If improvement occurs repeat the process. If you start to feel worse, then back down to where you were before. But changing the dosage BACK from where you felt improvement with a higher dose is just absurdly illogical.
It is also pretty well known (by anyone who does much study on hypothyroidism which appears to be thyroid patients and almost none of the Doctors!) that when a person is on a strictly T4 medication (which you are on) it can suppress TSH. That means that TSH becomes even LESS reliable than it already is. And as mentioned above and by your own history, you have shown TSH to be worthless as it relates to YOU specifically. So that would be proof on top of proof that the Dr. should not be using TSH on you for treatment decisions. He should be looking at your symptom relief and something other than TSH.
From peoples history on this site. Most people tend to find relief when their Free T4 is about mid range and the free T3 is in the upper 1/3 of the range. Of course this varies from person to person.
Also symptoms tend to most accurately track the Free T's best. And that there is almost no correlation to TSH at least not in terms of fine tuning medication dosage. As a first flag TSH can be an indicator. But the "normal" TSH range is made up so that 95% of the general population fit into that range. The problem is that a much higher percentage of the population is either Hyper or Hypo Thyroid than 5% so that would be your case. Where you fall inside the so called "normal" range but are Hypo.
Finding a Dr. who is even willing to test for the Free T3 and Free T4 is difficult if not nearly impossible at least that is what I'm finding. THEN if you get them to agree to finally do the test, getting a Dr. who treats by ignoring TSH and using both Free's and your symptoms is the next nearly impossible feat. Most Dr's do exactly what yours did. Give meds, see the suppressed TSH, panic and take you off or reduce your meds. Which is crazy when you think about it. Think to your situation. Your Dr. was perfectly willing based on your clinical response and your symptoms to bump up your dosage. However the Magic TSH belief stopped him from changing the dosage. So his first (and most likely proper) inclination was to raise the medication level. Had he not taken the blood test he would have done that. And seen how your clinical response was. But he took the test and won't do what he really knows in his heart was the best course of action. he was swayed by the magic TSH conundrum!
My wife has had the same problem. The Dr. would finally increase the dosage, and she would go back, report that she is feeling better with the increased dosage, take a blood test and then lower her back to the previous level???? That is pure insanity! a 2 year old should be able to figure out that if you change something and the situation improves to continue doing what you changed to. In fact one would then logically figure that changing in that same direction may further result in improvement. Make the change and then see what happens. If improvement occurs repeat the process. If you start to feel worse, then back down to where you were before. But changing the dosage BACK from where you felt improvement with a higher dose is just absurdly illogical.
I would see the Endocrinologist.
I also had depression and anxiety prior to having my son and have been on Zoloft for 4 years. My son is now 10 months old and I have good days and bad days.
I also had depression and anxiety prior to having my son and have been on Zoloft for 4 years. My son is now 10 months old and I have good days and bad days.
I agree that your doctor should not be making meds adjustments based on TSH alone. TSH tends to be an unreliable diagnostic generally, and as you say, yours has already been demonstrated to be unreliable in diagnosing your thyroid condition. This makes it doubly important to treat based on FT3 and FT4.
Furthermore, you still have symptoms.
It's true that many endos only want to treat diabetes. Endos are not the be-all and end-all when it comes to thyroid. You need a good thyroid doctor, no matter his specialty or lack thereof. You can pre-interview doctors over the phone (probably through a nurse). It's a good idea to ask which tests they regularly order for their hypo patients (FT3, FT4 and TSH all required). You can also ask if they're willing to treat clinically to relieve symptoms, using labs only as a guide, or if they "treat by the numbers".
It's a good idea to have your antibodies tested. Hashi's is the most prevalent cause of hypo in the developed world
Furthermore, you still have symptoms.
It's true that many endos only want to treat diabetes. Endos are not the be-all and end-all when it comes to thyroid. You need a good thyroid doctor, no matter his specialty or lack thereof. You can pre-interview doctors over the phone (probably through a nurse). It's a good idea to ask which tests they regularly order for their hypo patients (FT3, FT4 and TSH all required). You can also ask if they're willing to treat clinically to relieve symptoms, using labs only as a guide, or if they "treat by the numbers".
It's a good idea to have your antibodies tested. Hashi's is the most prevalent cause of hypo in the developed world
First I think it's important to say that the correct reference range for a TSH is .3-3.0. A lot of docs and labs still go by the old range. That being said, my TSH that makes me feel the best may not be anywhere close to your TSH that makes you feel best. Every thyroid patient is different. It's also important to note that you can't base your thyroid solely on a TSH test. T4 and T3 is important too. All of those tests can be normal but you still might have high antibodies that can cause symptoms too. Personally I have found that I have symptoms when everything is in the normal range but is outside my normal range. Sometimes switching meds helps. I went from synthroid, to synthroid and cytomel, and am now on armour where I feel the best. But if I deviate from my normal ranges than my symptoms can reappear. Also, have you had vitamin and mineral testing done? Being deficient in vitamins or minerals can cause symptoms as well.
The thyroid is so complicated and complex. I've learned that you have to be your own advocate. It's ok to demand the best health care. Seeing an endo doesn't mean that will happen. Most endos are concerned with their diabetes patients and may not be up to date on current thyroid research. It took me 5 different docs before I found one that I like.
If you haven't already I would look up on the web Mary Shomon. She's a thyroid patient advocate and knows her stuff. She has published books, has her own website, writes for about.com, and is on Facebook. She has been extremely helpful to me in my journey and I would recommend her to any thyroid patient.
I hope this helps and good luck!
The thyroid is so complicated and complex. I've learned that you have to be your own advocate. It's ok to demand the best health care. Seeing an endo doesn't mean that will happen. Most endos are concerned with their diabetes patients and may not be up to date on current thyroid research. It took me 5 different docs before I found one that I like.
If you haven't already I would look up on the web Mary Shomon. She's a thyroid patient advocate and knows her stuff. She has published books, has her own website, writes for about.com, and is on Facebook. She has been extremely helpful to me in my journey and I would recommend her to any thyroid patient.
I hope this helps and good luck!
Christine MP - I was thinking the best option would be to do the referral and really see what is going on. Thank you, and I think I'm going to take your advice on that one, as the Family Practice MD I am seeing has offered the referral, if I so choose.
Tangerine - Yep, it was my first child, and I had severe PPD for the first month after his birth and was treated with antidepressants, which helped with the hormone issues, but did not help with the physical symptoms of exhaustion, etc. but I brushed it off as a new mother thing....then when it didn't end after I was getting enough sleep, I knew something was off. I did lack in mentioning that I had been on antidepressants prior to my pregnancy for 6 years and was treated for what I was told was "chronic depression." In those 6 years, my TSH was tested periodically due to family history and symptoms that were in line with thyroid disfunction, but nothing was ever found to be abnormal with the TSH levels. I have never had my antibodies tested.
Tangerine - Yep, it was my first child, and I had severe PPD for the first month after his birth and was treated with antidepressants, which helped with the hormone issues, but did not help with the physical symptoms of exhaustion, etc. but I brushed it off as a new mother thing....then when it didn't end after I was getting enough sleep, I knew something was off. I did lack in mentioning that I had been on antidepressants prior to my pregnancy for 6 years and was treated for what I was told was "chronic depression." In those 6 years, my TSH was tested periodically due to family history and symptoms that were in line with thyroid disfunction, but nothing was ever found to be abnormal with the TSH levels. I have never had my antibodies tested.
You mentioned since your son's birth, is this your first child? Did you have PPD? I'm curious because I was diagnosed with Hashimoto's about 8 mOnths after my son was born and I have no previous thyroid problems. I felt terrible mOnths before my labs showed anything besides high antibodies. Did you have those tested?
I hope you can find some answers soon, I know how frustrating it can be.
I hope you can find some answers soon, I know how frustrating it can be.
Yes, I would ask for a referral to an Endocrinologist. TSH is not the best indicator of your thyroid function (although for some reason many docs use it exclusively). Free T4 is more informative and given your symptoms (which are consistent with hypothyroidism) I would definitely go by free T4.
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