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hypo now hyper??with multinodular goiter
hello all !..i was diagnosed with multinodular goiter and thyroisis where my antibodies attack my thyroid..was hyperthyroid on synthyroid for 9 mths had blood work every 2wks and my tsh is very suppressed the dr took me off synthyroid because im hyperthyroid now..i still feel very tired and my muscles hurt ,blurry vision,brain fog,i felt better on synthyroid but my dr says dont take them..what should i do is this normal.will my thyroid go back to hypo again?because the surgeon said if it stays hyper he will take the nodules out....is it normal to have hypo symptoms when your hyper..thank you for any responce as i dont know too much about this ive been reading up a little on it but dont understand the switch and why its happening...thankyou once again....b.
Best Answer
Is your doctor testing free T3 and free T4 as well as TSH? TSH can be suppressed for a number of reasons, so it's not a good diagnostic. What were you taking before your doctor discontinued your Synthroid? How long ago was that? Generally speaking, if you don't feel hyper, then you're probably not. Feeling well is the goal, not lab numbers.
My goiter wasn't extremely evident to outsiders, until the end my neck looked thick at the bottom. If I told someone about it and they felt however, it felt really big. It felt big on the sides and the middle. I was getting hoarse all the time and had trouble swallowing. At the end, it was hard to hold my neck straight, it just felt weird. Before that though, thyroid med had helped shrink it. When I went hyper, there was nothing I can do. The surgeon said mine was moderately large. It was very fibrous as well which probably gave me all the issues. Good luck, I hope you get this thing figured out. I know how difficult it can be.I'm a bad person to ask about labs since I had the WHOLE spectrum of symptoms. I had normal blood results when I was hyper (even showed hyper on the scan). I felt hyper and hypo while hypo, etc etc. I changed so much and so fast that I could never really tell what I was, but it was pretty much always hyper.
I think that fybromaliga is just a term Dr's are using to put a name to something that "they" can not explain.
Like what was mentioned above. The lack of knowledge about Thyroid and needing more than TSH to determine proper Thyroid levels the Dr's don't know what to "call" the peoples patients are reporting.
Many Dr's tell the patients that it is all in their head, and prescribe anti depressants etc. Now they have his new "disease" that they can call it. And like mentioned above, fybromiliga just so happens to often times be improved when the Dr prescribes Thyroid medication. But because the person tests "within range" they absolutely can not believe that it is a hypothyroid condition. Of course many times those same people with this "miraculous cure" when taking thyroid meds for fyrbromiliga just so happen to show that while within range, those patients are in the bottom of the range for FT4 and/or FT3.
Things that SHOULD make the Dr's and medical community say HUMMMMMM! Maybe the ranges are not appropriate and maybe TSH really isn't a very good tool to determine an individuals true thyroid state.
I Private Messaged you with a laymens description of the whole Thyroid/pituitary system that I use the analogy with the home heating system.
Like what was mentioned above. The lack of knowledge about Thyroid and needing more than TSH to determine proper Thyroid levels the Dr's don't know what to "call" the peoples patients are reporting.
Many Dr's tell the patients that it is all in their head, and prescribe anti depressants etc. Now they have his new "disease" that they can call it. And like mentioned above, fybromiliga just so happens to often times be improved when the Dr prescribes Thyroid medication. But because the person tests "within range" they absolutely can not believe that it is a hypothyroid condition. Of course many times those same people with this "miraculous cure" when taking thyroid meds for fyrbromiliga just so happen to show that while within range, those patients are in the bottom of the range for FT4 and/or FT3.
Things that SHOULD make the Dr's and medical community say HUMMMMMM! Maybe the ranges are not appropriate and maybe TSH really isn't a very good tool to determine an individuals true thyroid state.
I Private Messaged you with a laymens description of the whole Thyroid/pituitary system that I use the analogy with the home heating system.
hello and THANKYOU!!..wow you put it in terms i can understand (like a thermostat in a house)..im going to have a loong chat with my dr!!.and try and get my #s up here so i can understand what is going on from you people!!..you have all made this so much easier for me and i THANKYOU all for being here..what a wonderful site..also i have multiple nodules on my thyroid the biggest 3cm some of which are calified..can they be sputtering extra hormones?..i read it on the internet ?..the surgeon said if my thyroid keeps hyper (which is actually hypo from my symtoms) he will take them out...will this raise my tsh so it will show them im hypo?..the dr says fybromaligia is whats making me feel tired and sore..i dont believe i have that ..once again thankyou for your info..have an awesome day...take care..b
Other than your heart racing, all the other symptoms you list are consistent with being HYPO, not, I repeat NOT Hyper.
Without your numbers it is difficult to tell. But I would bet that the meds suppressed your TSH while you were still hypo. The fact that your Dr told you that your TSH was suppressed AND that your T3 & T4 were low are very typical signs of the Dr having "Immaculate TSH belief". That is, they believe TSH is the one and only gold standard and sure way to determine your Thyroid status. Simply based on a low TSH he "knew" you were hyper. Yet he ignored almost every single symptom you have that indicated that you were Hypo.
The truth is that if you take Thyroid meds you can essentially make TSH worthless as a tool. Yet that clearly is the ONLY tool that your Dr seems to be using. If that continues, he will keep you feeling sick.
Now think about this logically. When you were on the Thyroid meds, you felt better, but when he took you off you felt worse. And the symptoms that are coming back are all consistent with being hyPO, not Hyper.
Gee what do you think the odds are that you are still Hypo and were NEVER hyper?
Ask your Dr what your body actually uses. Does your body's cells actually use TSH? Or does it actually use Free T3? If he doesn't know the answer to that you need to get a new Dr. If he does he will have to admit that it is T3. And if he answers FT3, then ask him why are you not basing my dosage and determining my thyroid status based upon the one molecule that ACTUALLY does all the work, along with your symptoms and symptom relief?
Ask him at home when his furnace heater stops igniting, if he would continue to check the status of the heat in his house by checking the function of the thermostat. And if the thermostat said that it was 40 Degrees C, would he think that the house is hot when he has a sweater on to keep warm and go on his merry way? I don't think so. I think he would not give a rip about what the thermostat said and go right to a true measurement of the temperature of the air coming out of the heat ducts.
If he would do that for his house, why the heck would he continue to check TSH wich is nothing but the equivalent to the thermostat! By checking TSH that is exactly what he is doing and ignoring the true work horse of the body's heating system which is FT3!
I know that your Dr is concerned about your heart rate. And going Hyper can cause rapid heart rate and that can be dangerous. So he does have a valid concern there. But he must to look at the entire picture, not just one piece of the puzzle. You may have a completely separate condition related to you heart having nothing to do with Thyroid. The fact that you had a high heart rate when even HE knew you were hypo would indicate that it may be an unrelated condition.
I'd tell your Dr when he tells you to let him worry about your numbers. I'd tell him let ME worry about how crappy your making me feel by taking me off meds that were making me better! Now give my my freaking lab results! If he is arrogant enough he would have to believe you wouldn't understand them anyhow. So what is he afraid of? Is he afraid he will be found out to be a quack???
Being here in the USA it never ceases to amaze me all the people here that envy the UK and Canada's health care system. At least by law Dr's must give us our test results. I do not want ever to be beholdend to government telling ME how I'm feeling based on some numbers that they could care less about. You see if your test results are bad, it doesn't affect them (The Dr. or the government) one way or the other because it is not THEM who are feeling like crap. And the Dr's have little incentive because, they don't get paid any more or any less whether you are well or sick.
Free market however word gets out who is a good Dr. Everyone wants to see them so they get well and they can thus command higher prices and have a true incentive to help make sure every patient gets well. And the bad Dr's go out of business.
Without your numbers it is difficult to tell. But I would bet that the meds suppressed your TSH while you were still hypo. The fact that your Dr told you that your TSH was suppressed AND that your T3 & T4 were low are very typical signs of the Dr having "Immaculate TSH belief". That is, they believe TSH is the one and only gold standard and sure way to determine your Thyroid status. Simply based on a low TSH he "knew" you were hyper. Yet he ignored almost every single symptom you have that indicated that you were Hypo.
The truth is that if you take Thyroid meds you can essentially make TSH worthless as a tool. Yet that clearly is the ONLY tool that your Dr seems to be using. If that continues, he will keep you feeling sick.
Now think about this logically. When you were on the Thyroid meds, you felt better, but when he took you off you felt worse. And the symptoms that are coming back are all consistent with being hyPO, not Hyper.
Gee what do you think the odds are that you are still Hypo and were NEVER hyper?
Ask your Dr what your body actually uses. Does your body's cells actually use TSH? Or does it actually use Free T3? If he doesn't know the answer to that you need to get a new Dr. If he does he will have to admit that it is T3. And if he answers FT3, then ask him why are you not basing my dosage and determining my thyroid status based upon the one molecule that ACTUALLY does all the work, along with your symptoms and symptom relief?
Ask him at home when his furnace heater stops igniting, if he would continue to check the status of the heat in his house by checking the function of the thermostat. And if the thermostat said that it was 40 Degrees C, would he think that the house is hot when he has a sweater on to keep warm and go on his merry way? I don't think so. I think he would not give a rip about what the thermostat said and go right to a true measurement of the temperature of the air coming out of the heat ducts.
If he would do that for his house, why the heck would he continue to check TSH wich is nothing but the equivalent to the thermostat! By checking TSH that is exactly what he is doing and ignoring the true work horse of the body's heating system which is FT3!
I know that your Dr is concerned about your heart rate. And going Hyper can cause rapid heart rate and that can be dangerous. So he does have a valid concern there. But he must to look at the entire picture, not just one piece of the puzzle. You may have a completely separate condition related to you heart having nothing to do with Thyroid. The fact that you had a high heart rate when even HE knew you were hypo would indicate that it may be an unrelated condition.
I'd tell your Dr when he tells you to let him worry about your numbers. I'd tell him let ME worry about how crappy your making me feel by taking me off meds that were making me better! Now give my my freaking lab results! If he is arrogant enough he would have to believe you wouldn't understand them anyhow. So what is he afraid of? Is he afraid he will be found out to be a quack???
Being here in the USA it never ceases to amaze me all the people here that envy the UK and Canada's health care system. At least by law Dr's must give us our test results. I do not want ever to be beholdend to government telling ME how I'm feeling based on some numbers that they could care less about. You see if your test results are bad, it doesn't affect them (The Dr. or the government) one way or the other because it is not THEM who are feeling like crap. And the Dr's have little incentive because, they don't get paid any more or any less whether you are well or sick.
Free market however word gets out who is a good Dr. Everyone wants to see them so they get well and they can thus command higher prices and have a true incentive to help make sure every patient gets well. And the bad Dr's go out of business.
thankyou for the info and the informing link i read.....ill bring this up next week with my dr..thankyou and have an awesome day!!!!
hello again.hope all is well..and you feel better soon..i wanted to ask was your goiter visable on the front of your neck..my thyroid just looks swollen a bit on right side more then left..but i feel like im choking when i wear a necklace or if i look up or down..my neck feels stiff when i look side to side...is this what you felt??..my voice(i love to play guitar and sing)is unable to sing..yet i can talk a lil hoarse some days..but i cant sing it wont come out....did you experiance any of these symtoms?..and also i get alot of ear and jaw pain..ive had three infections in the middle ear this pst 2mths??/..is this also part of a thyroid thing??so sorry for all the questions..its just so nice to be able to relate with people going threw the same stuff..i was dianosed hypo 10mths ago..had blood work every 2-3wks and just this past 4wks my blood work shows hyper..i still feel the same as i did but not a s well as i was feeling on synthyrpoid...i guess time will tell if i stay hyper or i go back to hypo..im just confused about it and now knowing it can be normal to go back and forth reassures me that others have had this happen to them as well..once again thankyou and hope your feeling great soon!!!!.b
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