I have had hypothyroid disease for 30 years and have been on medication that long. When I was first diagnosed I was treated for a goiter with iodine drops. It seems my tyhroid levels never stay very stable. I am constantly having to adjust my dosage and the ability to get the correct meds has been even more challenging in the past couple years. I get blood tests almost every 6-8 weeks. My doctor always just tests a TSH. Two years ago I began having swollen lymph nodes. I had no other symptoms. One node in particular was very large. After several months of watching it, my ENT said it needed to be removed because it was very large. All was fine for a while. Now my thyroid levels are way off the charts again and I now have more swollen glands. My neck is tender down by my thyroid but the ENT found another enlaged node. This one I did not know I had. It is painless and hard and by my jaw. ENT said it has until Nov. to go away or I will need a biopsy. I also have a very enlarged node in my cheek which has been there for a year. It is hard but has not really changed in size. Mostly it is painless but sometimes it aches.
I have purposefully lost 50 pounds in the past year and have been exercising. I ocassionally have what I call a rapid heart beat although I don't think my heart is beating fast, I just feel kind of breathy.
I do not know if these things are related or if I need to see a different kind of doctor. I just don't think I feel "right" and I wish my thyroid levels would settle down.
Any ideas if these things are realted or if I just need to keep doing what I am doing?
My lymph nodes swell and then go back down along with my goiter. I get the rapid heart beat when my Hashimoto's is swinging to hyper mode. Do you have Hashi? That causes nodes. Hashi is the most common cause of hypothryoidism.
Still, I would get a second opinion. Get those nodes biopsied. Why the wait?
Also, find a doc who will treat the FT4/FT3 levels, not the TSH!
It sounds like you are not being treated by an expert in the thyroid field, IMHO.
Thanks for the reply! I was thinking I was crazy! I have never been told I have Hashi. I just had another TSH test and I will get results on Monday. I am going to ask my doctor about checking the other levels. He is my GP and he probably doesn't know I have more swollen nodes yet because they were found by the ENT. I had to go back for a re-check on the node in my cheek and I was expecting to hear I was all clear, then he found the other. Thanks for the info!
OK, now I am more confused. Got my TSH results and my level was 0.17. last time it was .4 time before that it was 36.0 Doc has been readjusting meds all over the place. Now the enlarged node under my jaw and tender neck nodes. I have been soooooooo fatigued. Just don't feel right. he is supposed to call me back today so I guess my questions should be why the constent fluctuations, why the fatigue (and sometimes racing heart), are swollen nodes connected, do I need to see an endo, and should he test the T3 and T4 as well as TSH. Is this right? Can anyone tell me if I should ask other questions?
Trying to respond quickly before you get call from doctor. First TSH is a pituitary hormone that is affected by so many variables, that it is not a good diagnostic for thyroid problems. At best it is an indicator that should be considered along with more important indicators, which are symptoms, and free T3 and free T4 levels. FT3 and FT4 are the actual thyroid hormones that are biologically active and largely regulate metabolism and many other body functions. FT3 is four times as potent as FT4 and FT3 correlates best with hypo symptoms. TSH does not correlate very well at all with hypo symptoms and should not be used to determine dosage of meds.
During your discussion with doctor, I suggest that you insist that they test for FT3 and FT4 (not total T3 and total T4), along with TSH and for thyroid antibodies. In my opinion the very best way for a doctor to treat a hypo patient is to test and adjust FT3 and FT4 levels with meds as required to alleviate symptoms. Symptom relief should be all important, not medicating to adjust a test result.
Wow. Thanks for the reference to the article. It explained a lot. It is amazing to me that I have been on meds for this for over 30 years and my doc has never really explained any of this to me. We just draw blood and re-adjust my meds. I have to ask sometimes because I can feel that something is off so he tests and sure enough I am almost 100% right when I ask for a test. That instigates 6 more months of 6 weeks TSH tests which result in different med doses. I just thought it was a simple thing and normal for everyone with thyroid problems to have trouble regulating their meds.....but 30 years?? These last 2 years however, it has been one extreme to the other. Then there is the whole lymph node, heart racing, high BP thing. I will sure ask him about this today. Thanks for all the help!
You read that article so quickly, that you might be interested in a letter that I sent to the Amer. Thyroid Assn. several months ago. It explains why the ranges for FT3 and FT4 need to be corrected, like TSH. I firmly believe this is why we hear of so many patients with FT3 and FT4 results in the low end of their ranges, yet they continue to suffer from hypo symptoms. Needless to say, I have never heard anything from the ATA. LOL
After having gone through years of not being treated for hypothyroidism, because my TSH was 4.97 and thus "normal", I was very pleased to note that the AACE had finally recognized that the range was incorrectly determined. After removing some suspect hypo patients' data, and recalculating the range, they recommended it be lowered and narrowed to .3-3.0. Six years after this recommendation, why is it that most labs and doctors still do not recognize the change and still use the old range? Since doctors also over-rely on TSH as the gold standard for thyroid testing, multitudes of hypo patients are still being told they are "normal" and do not get treated. Is the ATA doing anything to encourage the medical community to change this practice? If so, why is it taking so long?
My second concern is that doctors predominantly rely on TSH in determining a patient's thyroid status. Why is this, since TSH is a pituitary hormone that is affected by so many variables, including even the time of day when tested? Why not promote more widespread use of the actual thyroid hormones that are biologically active (FT3 and FT4) and that largely regulate metabolism and many other body functions? From studies I have seen and much personal experience, TSH does not even correlate very well at all with hypo symptoms. The test that has been shown to correlate best with hypo symptoms is free T3. Yet there are very few doctors that order a FT3 test as a matter of course, and some that refuse to order one at all.
When FT3 and FT4 are tested, the ranges are so broad that patients with overt hypo symptoms will usually still fall in the lower end of the current range. As a result they are also told they are "normal" and receive no treatment. Why haven"t the reference ranges for FT3 and FT4 been corrected like TSH, to exclude suspect hypo patients? If this were done, these ranges would likewise be raised and narrowed, comparable to the new range for TSH. I'm sure that some would say that the range is just a reference range, that as you approach the lower end of the range, that the probability of being hypo goes up and that in those cases, doctors look further to determine if medication is advisable. I agree that this should be the case but I assure you it isn't. Labs and doctors interpret results within the reference range as "normal" and don't want to go any further. As a result of all this the above misunderstanding and misapplication, millions of patients go untreated and remain miserable with their hypo symptoms.
Is the ATA doing anything to raise the awareness of these problems among the medical community so that we hypo patients can look forward to some positive changes? If you are not, then I cannot imagine any other organization that could do the work necessary to coordinate changing the awful mess that exists in the area of diagnosis and treatment of thyroid patients. Your response will be greatly appreciated.
Just got off the phone with Doc. He said my TSH has gone from 5 to .4. to 38.66 to .17. My Levoxyll doses have gone from .3 to .2 plus a .75 to a .2 plus a .05. Now he wants me on .2 plus a .025 and in 6 weeks will test my T3 and T4. I had to ask about that. he said it would be a good idea and these jumps are not really normal. On the meantime I have sometimes the racing heart, extreme fatigue, and swollen lymph nodes. Am I overreacting here or are these jumps trying to tell me something? I have had jumps before in the last 30 years but not this many in a row and none with big symptoms. The info here has been very informative and helpful but I feel kind of bad. Most here have had cancer. I guess I feel guilty complaining about my issues.
One of our members described the practice of dosing a patient by using TSH alone, as flying blind. Based on what I've outlined above, I'd have to agree wholeheartedly. It usually results in excessive changes in meds and overall it delays getting to the right dose.
With some of your symptoms I think I would ask to be tested for FT3 and FT4 (not total T3 and total T4) right away, and give the excuse that you really need to know where these two very important thyroid hormones are right now, in order to get a better feel for what the dosage change does over the next 6 weeks.
Don't feel bad about your posts, there are a lot of very experienced members here who are glad to try and help. Sometimes it takes a little more time than others. When you are feeling really great, then you can join in and help keep us going.
I got to thinking about this. If I have had an underactive thyroid for years, why would I start going to a hyperthyroid phase? I know the medication is part of it but what would cause the need for the medication to change anyway? I know there have been several discussions about checking T3 and T4, which I plan on asking for because the feeling from most of what I read here seems to be that is what is needed, but I did read another article that suggested that medicated hypothyroidism only needed the TSH because it was about controlling meds and TSH measured the meds. T3 and T4 for diagnostic. So what would cause the thyroid (or pituitary, I am not sure about all this), to start producing hormone when it hasn't in years?
Please read this excerpt from one of my earlier posts.
TSH is a pituitary hormone that is affected by so many variables, that it is not a good diagnostic for thyroid problems. At best it is an indicator that should be considered along with more important indicators, which are symptoms, and free T3 and free T4 levels. FT3 and FT4 (not total T3 and total T4) are the actual thyroid hormones that are biologically active and largely regulate metabolism and many other body functions. FT3 is four times as potent as FT4 and FT3 correlates best with hypo symptoms. TSH does not correlate very well at all with hypo symptoms and should not be used to determine dosage of meds.
Note my opinion that TSH should not be used to determine a patient's dosage of meds. That's why you have been bouncing around all over the place with your meds and your symptoms. Insist on being tested for free T3 and free T4, not just T3 and T4. Also request testing for thyroid antibodies. You may have trouble getting your doctor to do this, but you should insist that you want to be medicated based on testing and adjusting your FT3 and FT4 levels as necessary to alleviate symptoms.
Also note that especially when you are on thyroid meds, a low TSH does not mean that you are hyper and that your meds should be reduced. Only hyper symptoms make you hyper. That's been part of your problem. The doctor has reacted incorrectly to a low TSH and reduced your meds, only to have you go to hypo and TSH go way up, followed by an increase in meds, etc., etc.
I have been on the lower dose of Levoxyll for a little over 2 weeks and now my joints are so stiff and sore, I have gained 2 lbs, my contacts were so dry they actiually fellout of my eyes tonight. My lymph nodes are still hard and swollen......I am not due to have my levels checked until last week in Oct. and doc said he would check all the levels not just TSH. How could .5 make so much difference?? I am sorry to complain. Just need a little support I guess......
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