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If At First You Don't Succeed . . .
Try, try, try, try and try again!
I don’t know if this is an exaggeration or not, but I really haven’t felt like myself for 17 years. I’ve suffered from extreme fatigue and back pain for 17 years, since the birth of my first child. I was diagnosed with fibromyalgia.
Fast forward to about a year ago. I noticed I was losing weight when I was not trying to lose. I've always had a problem with keeping the weight on. So I went to the doctor, who ran several tests, including thyroid tests. When they came back, she said yes, they were low, but that was it.
My TSH, T4, and T3 were very close to the low end of the range.
My thyroid test results:
Date 6/5/2015
TSH 0.53 Standard Range 0.58-3.74
FT4 0.72 Standard Range 0.76-1.46
I asked to be referred to an endocrinologist, (#1) who ran more thyroid tests and sent me an email telling me they were all “normal”.
So I went to another endocrinologist, (endo#2) who did an iodine scan of my thyroid which found a hyper nodule. He put me on methomozile, which is used to treat hyperthyroidism. I took this medication for a week, during which time I felt horrible. Nassau, dizzy, faint to the point I finally had to stop taking it because I was afraid to drive.
So I went to endocrinologist #3. He told me since I do not have problems losing weight then it can't be hypothyroidism.
My thyroid test results at that time (Date 1/15/2016)
TSH 0.65 Standard range 0.3-3
FT4 1.1 Standard range 0.8-1.8
FT3 2.5 Standard range 2.3-4.2
Endocrinologist #4. I brought tons of paperwork. All the test results from previous doctors, my list of symptoms, etc. He asked me what do I think is wrong. I said based on my thyroid tests and symptoms, I believe I might have a pituitary dysfunction.
He said “Based on Endo Dr. #2’s assessment of your scan, who has been doing this for 30 years, the scan indicated to him that your level was a little bit high, which mimics what your thyroid labs show and your symptoms show. You have no evidence for pituitary dysfunction.
Every single study that you had done, shows that your pituitary function has been completely perfect.
All of your measured values are fine, they are right on the nose. And there is no expectation that you would have pituitary dysfunction. Pituitary dysfunction doesn’t just pop up with no real reason.”
He said “Everything points to me having subclinical hyperthyroidism. This is where your gland is making a little bit more than your pituitary gland wants you to have. Your thyroid function is a little bit on the higher edge but I would not offer any treatment for this.”
I don’t see how he could say my thyroid was a “bit on the high level” when my results were low????!!!!
I pointed out my T3 level to him. He said the “T3 is a very bad test. If I did it 5 different times on the same specimen of blood I would get 5 different results. So T4 is a more reliable test.” He then pointed to my T4 score of 1.1, with a standard range of 0.8-1.8. He said “This is a pretty acceptable number.”
As soon as he said that about T3, when I know from the ladies on here, that T3 is the BEST, most accurate test for measuring thyroid function, I gave up trying to reason with him.
Endocrinologist #5. This time I did not tell him anything that other doctors told me. I didn’t bring in any prior test results. I merely gave him a list of my symptoms. He ran thyroid labs. About a week later the test results came in and his nurse called me. She told my levels were lower than he would like them to be and based on my results and symptoms he said I have central hypothyroidism and has prescribed me 25 mcg of synthroid.
He also wants to have an MRI of my pituitary gland done to make sure nothing's going on with my pituitary gland.
My lab results (date 6/1/2016)
TSH: 0.938 Standard Range 0.34-5.6
FT4 0.68 Standard Range 0.58-1.64
FT3 2.6 Standard Range 2.5-3.9
T3 Reverse 11.3 Standard Range 9.2-24.1
So looks like Gimel was right all a long! She told me she thought I had hypothyroidism, and possibly a dysfunction in the hypothalmus/pituitary system.
Let's see... it only took FIVE doctors to finally get a diagnosis and treatment. I suppose I shouldn't complain, I know others have suffered without diagnosis for even longer. But it still feels horribly frustrating to have gone this long without help for the root cause of my problems.
I don’t know if this is an exaggeration or not, but I really haven’t felt like myself for 17 years. I’ve suffered from extreme fatigue and back pain for 17 years, since the birth of my first child. I was diagnosed with fibromyalgia.
Fast forward to about a year ago. I noticed I was losing weight when I was not trying to lose. I've always had a problem with keeping the weight on. So I went to the doctor, who ran several tests, including thyroid tests. When they came back, she said yes, they were low, but that was it.
My TSH, T4, and T3 were very close to the low end of the range.
My thyroid test results:
Date 6/5/2015
TSH 0.53 Standard Range 0.58-3.74
FT4 0.72 Standard Range 0.76-1.46
I asked to be referred to an endocrinologist, (#1) who ran more thyroid tests and sent me an email telling me they were all “normal”.
So I went to another endocrinologist, (endo#2) who did an iodine scan of my thyroid which found a hyper nodule. He put me on methomozile, which is used to treat hyperthyroidism. I took this medication for a week, during which time I felt horrible. Nassau, dizzy, faint to the point I finally had to stop taking it because I was afraid to drive.
So I went to endocrinologist #3. He told me since I do not have problems losing weight then it can't be hypothyroidism.
My thyroid test results at that time (Date 1/15/2016)
TSH 0.65 Standard range 0.3-3
FT4 1.1 Standard range 0.8-1.8
FT3 2.5 Standard range 2.3-4.2
Endocrinologist #4. I brought tons of paperwork. All the test results from previous doctors, my list of symptoms, etc. He asked me what do I think is wrong. I said based on my thyroid tests and symptoms, I believe I might have a pituitary dysfunction.
He said “Based on Endo Dr. #2’s assessment of your scan, who has been doing this for 30 years, the scan indicated to him that your level was a little bit high, which mimics what your thyroid labs show and your symptoms show. You have no evidence for pituitary dysfunction.
Every single study that you had done, shows that your pituitary function has been completely perfect.
All of your measured values are fine, they are right on the nose. And there is no expectation that you would have pituitary dysfunction. Pituitary dysfunction doesn’t just pop up with no real reason.”
He said “Everything points to me having subclinical hyperthyroidism. This is where your gland is making a little bit more than your pituitary gland wants you to have. Your thyroid function is a little bit on the higher edge but I would not offer any treatment for this.”
I don’t see how he could say my thyroid was a “bit on the high level” when my results were low????!!!!
I pointed out my T3 level to him. He said the “T3 is a very bad test. If I did it 5 different times on the same specimen of blood I would get 5 different results. So T4 is a more reliable test.” He then pointed to my T4 score of 1.1, with a standard range of 0.8-1.8. He said “This is a pretty acceptable number.”
As soon as he said that about T3, when I know from the ladies on here, that T3 is the BEST, most accurate test for measuring thyroid function, I gave up trying to reason with him.
Endocrinologist #5. This time I did not tell him anything that other doctors told me. I didn’t bring in any prior test results. I merely gave him a list of my symptoms. He ran thyroid labs. About a week later the test results came in and his nurse called me. She told my levels were lower than he would like them to be and based on my results and symptoms he said I have central hypothyroidism and has prescribed me 25 mcg of synthroid.
He also wants to have an MRI of my pituitary gland done to make sure nothing's going on with my pituitary gland.
My lab results (date 6/1/2016)
TSH: 0.938 Standard Range 0.34-5.6
FT4 0.68 Standard Range 0.58-1.64
FT3 2.6 Standard Range 2.5-3.9
T3 Reverse 11.3 Standard Range 9.2-24.1
So looks like Gimel was right all a long! She told me she thought I had hypothyroidism, and possibly a dysfunction in the hypothalmus/pituitary system.
Let's see... it only took FIVE doctors to finally get a diagnosis and treatment. I suppose I shouldn't complain, I know others have suffered without diagnosis for even longer. But it still feels horribly frustrating to have gone this long without help for the root cause of my problems.
One out of five doctors. That is 20%, which is higher than my estimate for the percentage that are good thyroid thyroid doctors. LOL So you got lucky with the fifth one. Now you will need to make sure the doctor is willing to treat clinically, by adjusting your Free T4 and Free T3 levels as needed to relieve symptoms. Symptom relief should be all important, not test results, and especially not TSH results.
As your dosage is gradually increased, keep in mind the following scientific study that showed that, " Suppression of TSH by thyroid replacement to levels below 0.1 mU/L predicted euthyroidism in 92% of cases, compared to 34% when TSH was above 1 mU/L (p < 0.0001)." So as long as you have hypo symptoms, don't let your doctor convince you to stop increasing your meds, if your TSH becomes suppressed below range.
http://www.ncbi.nlm.nih.gov/pubmed/12481949
In addition, hypo patients are very frequently too low in the ranges for Vitamin D, B12 and ferritin. All three are very important. D should be about 55 , B12 at the upper end of its range, and ferritin should be about 70. So you should get those tested and then supplement as needed to optimize.
Weight loss does occur with hypothyroidism, but somewhat infrequently. So just to be sure, I wondered if you have been tested for the possibility of being prediabetic?
And I am a male, with no plans for any change. LOL
As your dosage is gradually increased, keep in mind the following scientific study that showed that, " Suppression of TSH by thyroid replacement to levels below 0.1 mU/L predicted euthyroidism in 92% of cases, compared to 34% when TSH was above 1 mU/L (p < 0.0001)." So as long as you have hypo symptoms, don't let your doctor convince you to stop increasing your meds, if your TSH becomes suppressed below range.
http://www.ncbi.nlm.nih.gov/pubmed/12481949
In addition, hypo patients are very frequently too low in the ranges for Vitamin D, B12 and ferritin. All three are very important. D should be about 55 , B12 at the upper end of its range, and ferritin should be about 70. So you should get those tested and then supplement as needed to optimize.
Weight loss does occur with hypothyroidism, but somewhat infrequently. So just to be sure, I wondered if you have been tested for the possibility of being prediabetic?
And I am a male, with no plans for any change. LOL
1 Comments
Gimel - a guy? Whoops! I don't know why I assumed you were a woman, I guess since the majority of folks that suffer from thyroid issues are female, but I know males do as well. Sorry about that! But thank you for tirelessly responding to my posts.
About a month ago I received iron infusions to bring my iron levels up. My hematologist is going to test my levels again in a few months. I also take B12, vitamin D and iron supplements daily. No, I have not been tested for being prediabetic.
Whenever I go for a long time without eating, a few hours, I start to get faint. I can't skip meals or I'll get shaky and very faint. Whenever I have had my blood sugar tested, it's always been on the low side, varies between 70 to 100. I also always have low blood pressure, usually 100/70.
I will have to talk to endo #5 about diabetes, but I'm pretty ecstatic just to finally have a doctor that's willing to prescribe me medication for my thyroid! I was getting so desperate, I was almost about to order thyroid medication from Mexico, LOL.
About a month ago I received iron infusions to bring my iron levels up. My hematologist is going to test my levels again in a few months. I also take B12, vitamin D and iron supplements daily. No, I have not been tested for being prediabetic.
Whenever I go for a long time without eating, a few hours, I start to get faint. I can't skip meals or I'll get shaky and very faint. Whenever I have had my blood sugar tested, it's always been on the low side, varies between 70 to 100. I also always have low blood pressure, usually 100/70.
I will have to talk to endo #5 about diabetes, but I'm pretty ecstatic just to finally have a doctor that's willing to prescribe me medication for my thyroid! I was getting so desperate, I was almost about to order thyroid medication from Mexico, LOL.
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