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Thyroid nightmares
Hello, my name is Judi. I will try to be brief! I was a "radiation baby" back in 1947 and had radiation done on my enlarged thymus gland. In 1973, I was diagnosed as having Hypothyroidism and put on thyroid medication. Took it through 2 pregnancies, and after birth of 4th son in 1976, was taken off medication because my thyroid "normalized". I was still plagued with a myriad of hypothyroid symptoms and asked new PCP for bloodwork to confirm, explaining all the symptoms (too many to list here), along with the fact that I had lost 35 lbs fairly quickly while on medication), but he said he would not give me thyroid medication to lose weight -- go on a diet. Went to his associate while PCP was on vacation and he said thyroid was low and put me on medication, and symptoms began to disappear -- I felt great! Went to PCP many months later for an un-related illness, and he immediately took me off medication, saying I didn't need it, that my thyroid was fine. Suggested an endocrinologist (he trusted), and upon meeting me, read the blood work results; did no testing whatsoever but said, "I wouldn't put you on thyroid medication either with these results". Needless to say, I departed her office quickly! Battled to be heard for several more years, but to no avail, although upon testing, found that my adrenal glands showed some evidence of a problem. Had a cortisol test with ACTH, and lo and behold! those results were suddenly "normal". Went to new PCP; they did TSH bloodwork, etc., and again said thyroid was fine. He transferred to new office and I was given another PCP to whom I asked for in-depth bloodwork, but before she could begin to research it, she left the practice for one in another state! This problem went on for years, and after being told by a second endocrinologist that my thyroid bloodwork was fine, he pointed his finger in my face and loudly told me I was depressed and put me on Paxil. I gained 45 lbs in one year; weaned myself off the Paxil and sought other help. My PCP at that time remained in the practice, but moved to their sister practice many miles away and too far to travel, and I was given still another PCP. This one also found my thyroid to be "fine". Present day: I was told I have two goiters, one on either side of my thyroid and that my now PCP decided we would simply watch them and see if they grow. This was NOT acceptable! It was only after mentioning that I had difficulty swallowing pills and a cough occasionally, that she sent me to another endocrinologist, who vowed to get to the bottom of the problem. He also found through blood tests, that my thyroid was fine, but he suspected an adrenal gland problem. He did a total blood workup, found that my hormones seemed to be fine, but that I was Vitamin D deficient and put me on prescription Vitamin D -- 2 gels per week, which I started yesterday, Wednesday, August 6, 2009. He also had me do a 24-hour urine test which they now have in their possession, and must check the results.. I must also have to have a second doppler on my thyroid, (the first was done in Sept. of 2008), and as far as I know, that is that. Now my question is: If my thyroid is "fine"; if my adrenal glands are "fine"; but I have all the same symptoms with more added, and am gaining weight by leaps and bounds, what in the world is wrong with me, and who can I possibly go to who I can trust??? What is wrong with the medical field??? I have been mis-diagnosed, mis-treated, and told I'm depressed or that it's all in my head -- so where do I go now???
Well, I did as you suggested (in a letter) and dropped it off at the endo's office today. I did ask for the T3 test, as well as asking if about the low range TSH & T4. I also asked if he would put me on medication and monitor my progress, and if he could see me earlier than the 8-week appt he set up on our first initial visit so we could talk about this and a find the a solution. If he does not agree to either, I will be wanting to see another endo. because it is not going to end here. My hubby (out of love, I'm sure) is trying to understand, but since I have seen so many doctors and have been told the same things: "Your tests are all normal", hubby, like so many others, believes I should just go on a REAL diet, and essentially LIVE WITH IT. He means no harm to me, but as you well know, you can't understand a situation unless you've gone through it or are living it; and like most men -- of course I don't mean ALL men -- there must be a logical explanation, and to them doctors are, of course doctors, and therefore logical. Ahem.
In any case, I will keep you posted. In the meantime, please keep me in your prayers.
Thanks. 1jammer
In any case, I will keep you posted. In the meantime, please keep me in your prayers.
Thanks. 1jammer
It's usually very difficult to get a doctor on the phone just to answer questions from a prospective patient. An email is a good alternative. Here's some questions to consider.
The first questions you should ask is whether the doctor routinely checks the actual, active thyroid hormones, FT3 and FT4 for diagnosis and treatment, or if he relies mostly on TSH. If you get the wrong answer to that, you might as well move on to another doctor. If the first answer sounds okay, then ask if the doctor would be willing to treat you based on listening to your symptoms and testing and adjusting FT3 and FT4 as required to alleviate those symptoms. If the answer is no, then move on. If the answer is yes, then ask if the doctor prescribes only T4 meds, or if he is willing to also prescribe a T4/T3 combo or even a T3 type med. If the answers are what you want to hear, then you can have confidence in making an appt. If not, then you probably should keep looking for a good thyroid doctor.
The first questions you should ask is whether the doctor routinely checks the actual, active thyroid hormones, FT3 and FT4 for diagnosis and treatment, or if he relies mostly on TSH. If you get the wrong answer to that, you might as well move on to another doctor. If the first answer sounds okay, then ask if the doctor would be willing to treat you based on listening to your symptoms and testing and adjusting FT3 and FT4 as required to alleviate those symptoms. If the answer is no, then move on. If the answer is yes, then ask if the doctor prescribes only T4 meds, or if he is willing to also prescribe a T4/T3 combo or even a T3 type med. If the answers are what you want to hear, then you can have confidence in making an appt. If not, then you probably should keep looking for a good thyroid doctor.
I am in Pittsburgh, PA, and I did get your information on doctors in my area. I am now in the process of sending the endocrinologist who gave me the information and did the blood tests and urine study, an email (his bio states that he answers them), and see if I can get any help that way. As I said, I did ask his staff to have him call me when he has a moment so that we could discuss this, but he never called so this is my last resort.
In the meantime, hubby-honey suggested that I REALLY try to lose weight so that when I do talk with the doctor, my weight won't be an issue. Ahem. Hubby is trying to be helpful -- I guess. But the fact that he doesn't think I already did try to lose weight tells me a bit more.
I do understand now, that you were trying to tell me he really isn't "all that" as a doctor, but I was blindsided by the fact that he SEEMED genuinely interested.
I will let you know how the email goes.
1jammer
In the meantime, hubby-honey suggested that I REALLY try to lose weight so that when I do talk with the doctor, my weight won't be an issue. Ahem. Hubby is trying to be helpful -- I guess. But the fact that he doesn't think I already did try to lose weight tells me a bit more.
I do understand now, that you were trying to tell me he really isn't "all that" as a doctor, but I was blindsided by the fact that he SEEMED genuinely interested.
I will let you know how the email goes.
1jammer
I am in Pittsburgh, PA, and I did get your information on doctors in my area. I am now in the process of sending the endocrinologist who gave me the information and did the blood tests and urine study, an email (his bio states that he answers them), and see if I can get any help that way. As I said, I did ask his staff to have him call me when he has a moment so that we could discuss this, but he never called so this is my last resort.
In the meantime, hubby-honey suggested that I REALLY try to lose weight so that when I do talk with the doctor, my weight won't be an issue. Ahem. Hubby is trying to be helpful -- I guess. But the fact that he doesn't think I already did try to lose weight tells me a bit more.
I do understand now, that you were trying to tell me he really isn't "all that" as a doctor, but I was blindsided by the fact that he SEEMED genuinely interested.
I will let you know how the email goes.
1jammer
In the meantime, hubby-honey suggested that I REALLY try to lose weight so that when I do talk with the doctor, my weight won't be an issue. Ahem. Hubby is trying to be helpful -- I guess. But the fact that he doesn't think I already did try to lose weight tells me a bit more.
I do understand now, that you were trying to tell me he really isn't "all that" as a doctor, but I was blindsided by the fact that he SEEMED genuinely interested.
I will let you know how the email goes.
1jammer
No, you definitely have not worn out your welcome here, so don't stop talking to us. Any frustration you felt coming through my post was because the doctor is not doing anything to help you on his own. That's why I have repeated the info, to suggest that you need to stop just accepting what the doctor is doing and demand that something be done to alleviate your hypo symptoms. You need a doctor that will listen to your symptoms and test and adjust FT3 and FT4 with meds, as required to alleviate those symptoms.
Your doctor currently is ignoring your symptoms. He is clearly a believer in the "Immaculate TSH" and isn't really considering the possibility that you could have a thyroid problem. Instead he needs to find out why your TSH is low in the range while FT4 is also very low in the range. Also, he needs to check FT3 as well to confirm that it too is in the low end of the range. Then he needs to start you on a therapeutic dose of thyroid meds and monitor the effect on your hypo symptoms.
You really need to beat up your doctor until he agrees to do this, or lacking that you need to find a good thyroid doctor. We maybe can help with that if you will let us know what area of Pa. you are in.
Your doctor currently is ignoring your symptoms. He is clearly a believer in the "Immaculate TSH" and isn't really considering the possibility that you could have a thyroid problem. Instead he needs to find out why your TSH is low in the range while FT4 is also very low in the range. Also, he needs to check FT3 as well to confirm that it too is in the low end of the range. Then he needs to start you on a therapeutic dose of thyroid meds and monitor the effect on your hypo symptoms.
You really need to beat up your doctor until he agrees to do this, or lacking that you need to find a good thyroid doctor. We maybe can help with that if you will let us know what area of Pa. you are in.
I think I have worn out my welcome by complaining so much about my "condition", or for repeating myself and I do apologize. I don't think I will be adding comments any longer, but I will definitely remain reading the forums, as they do help me a lot!
Thanks, everyone and good luck to you all.
1jammer
Thanks, everyone and good luck to you all.
1jammer
Hello! I have been away for awhile, but just got back and have some interesting news. In an earlier blog, I believe I mentioned that I had two goiters on my thyroid, and (I think!) you asked what the (dimensions) of my goiters were, and I now have the results:
"Sagittal and transverse sonographic images were obtained through the thyroid gland demonstrating the right lobe to measure 3.9 x 1.2 x 1.1cm. There are two small right lobe cystc nodules measuring between 2 and 3mm. The isthmus measures approx 4mm to thickness. Arterial flow was demonstrated within the right thyroid love and isthmus.
Left lobe measures 5.0 x 1.1 x 1.4cm. Arterial flow was demonstrated within the left thyroid lobe. There are multiple small left thyroid nodules the largest of which measures approx 5mm in greatest dimension. The thyroid lobes show a somewhat heterogeneous echotexture. No dominant nodules are see.
Impression: 1. small bilateral thyroid nodules which are predominantly cystic and may represent colloid cysts."
At present, the endocrinologist I saw also took a 24-hour urine study for hormonal imbalances, etc., and as you might guess, everything came back "normal". (Who didn't know THAT???) In any case, I have heard nothing more from him, and am now back at square one. My PCP was to have sent them a fax of the results of the doppler, and did not; therefore, I am taking my copy to him today -- Mon., Aug. 17. I am discouraged, at best; and do not know where to go from here. HELP!!!
"Sagittal and transverse sonographic images were obtained through the thyroid gland demonstrating the right lobe to measure 3.9 x 1.2 x 1.1cm. There are two small right lobe cystc nodules measuring between 2 and 3mm. The isthmus measures approx 4mm to thickness. Arterial flow was demonstrated within the right thyroid love and isthmus.
Left lobe measures 5.0 x 1.1 x 1.4cm. Arterial flow was demonstrated within the left thyroid lobe. There are multiple small left thyroid nodules the largest of which measures approx 5mm in greatest dimension. The thyroid lobes show a somewhat heterogeneous echotexture. No dominant nodules are see.
Impression: 1. small bilateral thyroid nodules which are predominantly cystic and may represent colloid cysts."
At present, the endocrinologist I saw also took a 24-hour urine study for hormonal imbalances, etc., and as you might guess, everything came back "normal". (Who didn't know THAT???) In any case, I have heard nothing more from him, and am now back at square one. My PCP was to have sent them a fax of the results of the doppler, and did not; therefore, I am taking my copy to him today -- Mon., Aug. 17. I am discouraged, at best; and do not know where to go from here. HELP!!!
I will do that. I guess all is not lost after all -- I feel a bit of hope coming back!
With that, I will sleep soundly! Goodnight and Thanks a bunch!!!
With that, I will sleep soundly! Goodnight and Thanks a bunch!!!
Judi, if you need a little inspiration to get your thyroid straightened out, then have a look at the bio on Oldie, at this site.
http://www.medhelp.org/personal_pages/user/208108
http://www.medhelp.org/personal_pages/user/208108
I am very grateful -- thank you for the site information -- as you said, I can always cancel an appointment if not needed. I just don't relish going through everything all over again -- however, I am not saying 'no'. Hope is eternal -- as I am.
1jammer
1jammer
Don't forget when talking to your doctor that you are the customer. He is the service provider. Sometimes they seem to forget that you are paying the bills for their service.
In case this doesn't work out for you, might as well start planning on the possibility that you might have to find a good thyroid doctor. I have a couple of sites for you. Have a look and read the patient feedback and see if any are interesting. If so, then you might as well make an appointment, as it's likely to take some time to get one. If unneeded, you can always cancel.
http://www.thyroid-info.com/topdrs/pennsylvania.htm
http://www.armourthyroid.com/con_phResults.aspx
I included the ones that have prescribed Armour only because we've found that they tend to be more flexible in their treatment protocol, as a rule.
In case this doesn't work out for you, might as well start planning on the possibility that you might have to find a good thyroid doctor. I have a couple of sites for you. Have a look and read the patient feedback and see if any are interesting. If so, then you might as well make an appointment, as it's likely to take some time to get one. If unneeded, you can always cancel.
http://www.thyroid-info.com/topdrs/pennsylvania.htm
http://www.armourthyroid.com/con_phResults.aspx
I included the ones that have prescribed Armour only because we've found that they tend to be more flexible in their treatment protocol, as a rule.
Well, you've given a good argument, and I will talk to the doctor. As it stated in the article, many doctors avoid the T3 for "expense" purposes -- or, because they rely entirely on the TSH for evaluation -- that it is the best. But I will mention the tests to him, and (insist?) he perform them. Initially, he commented that he didn't "think" it was my thyroid, that it was possibly my adrenal glands malfunctioning; but he didn't rule it out entirely, either. After the tests came back however, he did say that my thyroid was 'fine' -- that the TSH was in the normal range. In answer to my question, "Well, now I am confused -- if my tests show normal and I have all these symptoms that even you noticed and asked me about, then what the heck is wrong with me?" He then told me not to worry, and "let's just wait to see what the urine tests show". Next up? The doppler -- again. But.........if he refuses the tests or says they will make no difference, I would like to have your help. I am in Pittsburgh, PA. Thanks again for your compassion and caring! 1jammer
That applies to TSH, not FT3 and FT4. 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 some 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.
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 some 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.
Wait -- I'm a bit confused. I thought the higher the number, the more Hypothyroidism was suspect. I thought my numbers were in the "really normal" range. Maybe I need a lesson in thyroid values??
With your FT4 being so low in the range, I'll bet you a cup of coffee that your FT3 is also low in its range. Taken together that could easily explain your low metabolism and fatigue. Moving those thyroid levels above the midpoint, or higher, and getting your Vit. D increased, could make a huge difference for you. I can personally vouch for that, and I have a number of years on you. I walk and play golf 3-5 times a week, play tennis twice a week and generally have plenty of energy, and have gotten my weight to a very good level since I got most of my thyroid problems fixed.
I would love to revive the hope I once had. I have four unbelievably wonderful, loving, caring sons and 6 beautiful grandchildren whom I love dearly, and am still young enough to get on the floor and play with them at their own level. However, it breaks my heart when I feel too tired to visit with them, or have them all over for dinner. I do it, but pay later; and that I know it didn't have to be that way all these years, simply stirs up the hostility once again, and I want to pull out all the stops and go into the PCP's/Endocrinologists/Psychologists offices like gangbusters and tell them what jerks they all are. But as I said, it will change nothing. However, I am still on the fence on this one. I want to fight back, but have tried in the past and failed. I have been to see so many doctors who tell me the same story over and over again: That I'm fine; I just need to lose weight; I need to put on make-up so I will look nicer, hence feel better; take Paxil; et., etc. The worst part is that although I believe something has been and is definitely wrong, I am beginning to question myself. And unfortunately, even though I'm not THAT old, that can work against you because according to a lot of doctors, when you hit 60, they say -- let's see, how shall I say this delicately -- "you are getting older, what did you expect?" Yeah, okay.
Believe me it's nowhere near late enough in the game to let the doctors get away with what you've gone through. You ladies outlast us by so many years that I hope you will reconsider and get that FT3 and TFt4 testing done. Exact your revenge on the medical community by bombarding the doctor with copies of articles that talk about the fallacies of the "Immaculate TSH Belief" and the importance of the real thyroid hormones, FT3 and FT4, and the need to treat symptoms by testing and adjusting the "Frees" with meds, as required to alleviate symptoms. One of our members has suggested that the best way to get the attention of stubborn doctors is to stop at hardware store and buy some chain and a padlock and lock yourself to his door and threaten to swallow the key unless he does the testing and medicating that you need.
If that fails we have a 3 member team that will fly in for a little EIT (Enhanced Interrogation Techniques, including waterboarding), and a discussion about TSH and FT3 and FT4, until the doctor relents. So far no doctor has been able to last longer than 72 hours. LOL Hope you'll reconsider and let us try to help any way we can.
If that fails we have a 3 member team that will fly in for a little EIT (Enhanced Interrogation Techniques, including waterboarding), and a discussion about TSH and FT3 and FT4, until the doctor relents. So far no doctor has been able to last longer than 72 hours. LOL Hope you'll reconsider and let us try to help any way we can.
Thanks so much for your suggestion -- I did go to the site and in fact, printed it out merely to show my Endocrinologist. But you know what? I've already reached the point of opting out and chucking the whole thing. I have already wasted many (of my prime good years) trying to find out what my problem is, and at 61, I am done. This last endocrinologist I am seeing is just that -- the last. Whether or not he finds (anything/something) is a moot point -- I can't get back all the wasted years, and it's too late in the game now to care. I will go through with the doppler and receive the results of the urine testing, etc., but whatever comes of it, comes of it -- nothing can change what has already happened, or not happened, however you want to look at it. When I first wrote you, I sort of felt hope, and wanted to find answers, but I really think I'm kidding myself. As I have read through so many of the sad and hopeless stories written here, my heart hurts for every one of them. I know exactly what they are going through, and for the poor souls worse than I, who have been searching for years as well, I feel such empathy and passion. As for me, I have reached the "I don't give a damn" point of no return. I apologize if that sounds like I feel sorry for myself. I do not in any way feel sorry for myself, but I am damn mad. But that and $1.85 will get you a cup of coffee because no amount of anger or disgust can change things now. Well, take care, and be well. Judi
I can imagine that the doctor decided you were okay, due to the TSH result and that FT4 was just barely within the range. We Forum members have learned that TSH, which is a pituitary hormone, is only an indicator of thyroid levels, and is not a diagnostic tool, since it is affected by many variables, including the time of day when the blood was drawn for the test. Not to say that there are no other problems, but I would start by getting supplemental testing for FT3. FT3 and FT4 are the actual, active thyroid hormones that largely affect metabolism and other body functions. In addition, FT3 is the most active, it is four times as potent as FT4, and it correlates best with hypo symptoms.
I have to go out for a while so won't be able to post more until later this evening. In the interim, I think you will be well served to read this link.
http://www.hormonerestoration.com/Thyroid.html
I have to go out for a while so won't be able to post more until later this evening. In the interim, I think you will be well served to read this link.
http://www.hormonerestoration.com/Thyroid.html
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