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1766910 tn?1314194973

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
Avatar universal
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.  

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Avatar universal
This is a very old thread.  You'd get a lot more attention to your individual problem if you went to the top of the page and hit the "Post a Question" button.  You can copy all the information from here into the new thread.

Also, please include reference ranges as these vary lab to lab and have to come from your own lab report.

Tell us about your symptoms, too.
Helpful - 0
Avatar universal
hi there, can u please help me. i have been having hypothyroid from past 5 yrs , it was always in control with a medication of thyronorm 50mcg (once per day), 4 months back i got it checked and the reading were t3..1.28 ng/ml , t4... 10.04 ug/ml and tsh was 1.66 ulU/ml and now they reading are showing as.. t3 ..1.50 ug/ml, t4... 12.45 ug/ml and tsh 0.051 ulU/ml . I was shocked to the see the results , it been in control from past 5 yrs and all of a sudden within four months the hypo has turned to be hyper. How is it possible? Is there any solution from my problem , i would be very glad if u can help me out
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Avatar universal
hi there, can u please help me. i have been having hypothyroid from past 5 yrs , it was always in control with a medication of thyronorm 50mcg (once per day), 4 months back i got it checked and the reading were t3..1.28 ng/ml , t4... 10.04 ug/ml and tsh was 1.66 ulU/ml and now they reading are showing as.. t3 ..1.50 ug/ml, t4... 12.45 ug/ml and tsh 0.051 ulU/ml . I was shocked to the see the results , it been in control from past 5 yrs and all of a sudden within four months the hypo has turned to be hyper. How is it possible? Is there any solution from my problem , i would be very glad if u can help me out
Helpful - 0
1766910 tn?1314194973
hope you recover soon! you sound like you went threw alot!!..4yrs of this!?..im only almost threw my 1rst year of feeling like this...i pray i dont have to go that long!!..i feel for you..i also take a day at a time..even a minute at a time some days!!..i really want to thank you if it werent for people like you out there i would feel more alone in this illness  im soo happy i can relate with others going threw this...once again THANKYOU and have a speedy recovery!!! and an awesome day....b
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215461 tn?1331862765
It's not common to switch around that fast, and the doctors will tell you its not even possible.  I had them baffled all the time though.  Mine DID change that fast and sometimes withing a few days.  Everyone varies a little bit throughout every day, but usually its not a big switch from hypo to hyper.  I am still dealing with surgery aftereffects, so I'm just taking one day at a time.  I'm only a week post-op so I probably won't be feeling good for a little bit until my body heals and I find the right dose.  I can't make an accurate judgment yet because I STILL feel like I'm choking since I have some fluid under my incision.  It's just gonna take some time.  If you have nodules, they can shoot hormone out independently and cause your problems.  I just had a large, fibrous thyroid.  I guess the fibrous ones branch out and attach to everything causing more issues.  Your goiter doesn't have to look huge on the outside to be too big.  Some people even have ones that grow inwardly.  It's also about the location of your goiter and nodules.  Some can grow huge and not cause the individual that much stress, but others can look not that big, but be in a troublesome location.  It is common for hahi's to switch to hyper for a bit, particularly in the beginning stages of destruction.  In my case however, I was about 4 years into the disease already and transitioned over to hyper.  I don't really understand it.  Just try to hang in there.  Unfortunately this isn't one of those things you can find a quick solution to.  It takes a lot of hard work, dedication, patience, and strength to get through.  Hopefully your problems will not last too much longer, and you will be on the path to wellness.
Helpful - 0
1766910 tn?1314194973
hello and hope your doing well...wow my neck is also just a little big at the bottom and sides more on the right side..ive seen pictures on the internet and thought to myself does it has to get this big before the drs do anything ..so yours was fybrous?..no nodules?..how are you feeling now ..i guess you will be hypo permantly now?...you also say you switched from hypo to hyper and couldnt tell the differance due to changing back and forth so much...maby thats happening to me..they only do blood work every 2-3 weeks..and maby i switch in between ..??..well once again thankyou for your reply and you have helped me alot..hope you heal fast and feel great again..thankyou..have a great day!!!...b
Helpful - 0
215461 tn?1331862765
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.
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Avatar universal
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.
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1766910 tn?1314194973
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
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Avatar universal
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.
Helpful - 0
1766910 tn?1314194973
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!!!!
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1766910 tn?1314194973
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
Helpful - 0
Avatar universal
Sorry if I'm repeating anything from above, but I am on the way out and haven't gone over the whole thread.  

Patients taking thyroid meds frequently find their TSH is suppressed.  this does not mean you are hyper unless you are also having hyper symptoms, due to excessive FT3 and FT4 levels.  

A good thyroid doctor will treat a patient clinically, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levls.  Symptom relief should be all important, not just test results.  

I know the difficulty in getting clinical treatment in Canada.  It is basically the same in the UK.  I thought you might get some worthwhile info from this quote from one of our UK members.  "What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

So, as a start, this is a link to a letter about clinical treatment.  It is written by a good thyroid doctor for patients that he consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf
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1766910 tn?1314194973
hello again!..im not in the states..im in canada..in the country where drs are few and good specialists are very rare unless you drive 4hrs away...but im going to ask for my #s from my family dr...the endo just keeps saying dont worry about the #s ill look after them..also i take metoprolol tartrate for my heart i have disrythmia..and my heart goes soo fast without my pills...i also have restless leg syndrom the dr put me on meds for that too but they dont help..he also put me on sleeping pills ..i am not one for taking any pain meds i feel they are just a bandage that hides the true problems..i do things as naturaly as i can..as for the symtoms of hyper..i have gained weight ive always been tiny..110lbs..now im 130 i still feel tired most days and my muscles ache and feel weak..i havent been able to work at my job for 10mths now and i had to tell them i wont be coming back...im a positive thinker but this has frusterated me because just a year ago i was doing pretty good healthwise...im almost 50 now and feel like 90 somedays.right down to my eyesight.....again thankyou for being there and i will post my #s if and when the dr gives them to me..all i know is my last results where tsh very suppressed and t3 and t4s were.0n low side...and dr said im hyperthyroid now...i think they took me off synthyroid to see if my thyroid is going to go back to hypo??..once again thankyou..have an awesome day...b
Helpful - 0
215461 tn?1331862765
I was very very very hyper and symptomatic (heart raced all the time, heart palps, couldn't breathe, high bp, panic attacks etc).  In just never went back to being hypo.  I was severely ill.  I couldn't live my life.  My choices were RAI, surgery or antithyroid drugs.  I was going to attempt antithyroid drugs, but my goiter started choking me so bad.  The doc also told me for my thyroid, surgery was the best option as wit RAI it takes things in at different rates and it would have been a long process for me.  Taking antithyroid drugs I don't think would have worked for me any better than thyroid meds.  I fluctuated sometimes daily.  My tsh shot to high extremes from month to month before settling on hyper.  Hashi's usually gives you a short period of being hyper, but generally most people don't stay hyper like I did. I'm not sure I didn't also develop graves at the time.   Everyone is different though, and there is no indication this will happen to you.  You said you were on .75 mcg of thyroid so that leaves a LOT of room for decreasing.  Maybe your dose was just too high?  Also, did you have hyperthyroid symptoms?  I had them all of the time.
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Avatar universal
If you're in the States, your doctor has to provide lab results upon request.  They're yours...you paid for them.

There are some people who believe that fibro is not a separate disease, but is actually hypothyroidism.  Interestingly, it's often treated with thyroid hormones...

What do you take for your heart?  Do you have a diagnosed heart condition?

I do have Hashi's and a multi-nodular goiter.  I don't go hyper any more...that's usually in the early stages of the disease.  I'm guesing that you weren't really hyper, either.  It sounds to me like your TSH was suppressed due to meds.  If youe weren't having hyper symptoms, then you probably weren't hyper.  Hyper symptoms can include weight loss, heast intolerance, diarrhea, annxiety, elevated HR or BP, insomnia, etc.
Helpful - 0
1766910 tn?1314194973
thankyou so much!!..so you went hyper too?..and they just removed all of your thyroid..hope your doing well from surgery!..did the dr tell you why he removed it all?..you said you were hypo at first did you feel differant when you went hyper?..or were you still feeling tired with sore muscles?.once agin thankyou for the info..and hope your doing good..hope your recovery is fast and you feel great again..thanks...b
Helpful - 0
215461 tn?1331862765
These other individuals will help you with everything that is going on.  I just wanted to tell you that it is possible to transition to hypo to hyper.  I was hypo for 3 years on meds, and went hyper.  I was taken off meds, and finally kept going hyper even on my own.  I had a large goiter  with no nodules, so I have no idea what kept me hyper for the better part of a year.  I just had my thyroid removed a few days ago though, because I was pretty much out of options.  I'm wondering why your doc didn't try decreasing your meds rather than just taking you off of them.  As the others said though, if you can get your numbers, the can really help out.  Everyone is different and the numbers in the "normal" range are not always what feels best for us.  Good Luck.
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1766910 tn?1314194973
hello and hope all is well your way..i asked my  endo dr for copys of my results and he said let me worry about the #s..im going to ask my family dr for my results.because im so confused with this all...i was feeling ok on the synthyroid.had my tired days..but over all i was feeling better then i am now...what im learning on here is the tsh test is not that important and the t3 and t4 are what matters with hashies..i just have to help my dr u nderstand that..he is saying maby i have fybromaligia due to me being tired and have very sore muscles..i go see him again next week..then the endo in oct..i really really want to thank you goolara for all your info..and i will post my results when i get them..also im on heart pills have been for 10 mths now..my heart races alot.even when my t3 and t4s where.high and i was dianosed hypo..autoimmune disease..thankyou goolara once again do you have hashies too?...did you go hyper for a while..do you have a multinodular goiter too?....im trying to get as much info as i can on all of this..i need answers  and i always had faith with my fam dr  i think he just listens to the specialists now.  ok ive wrote more then i should have here..have so many questions..so sorry this was long!!...have an awesome day..and THANKYOU for being there.......b
Helpful - 0
Avatar universal
Sorry, should have said that what you have is Hashimoto's thyroiditis (Hashi's), which is an autoimmune disease where antibodies attack your thyroid.

When some people take thyroid meds (Synthroid, etc.) their TSH becomes suppressed.  That does NOT mean they are hyper.  It just means that, for THEM, TSH is no longer a reliable test on which to base treatment decisions.

Helpful - 0
Avatar universal
Can you post recent labs?  Please include reference ranges, which vary lab to lab and have to come from your own lab report.  It would be much easier to comment after seeing those.  It sounds like your meds are/were never adjusted properly.  If you have more than on set of labs, post a few.  If you don't have copies of lab reports, call your doctor and request them.

Switching from hypo to hyper is not "normal".  However, in the early stages of Hashi's, there are sometimes swings back and forth.  I'd really like to see your labs...it's so hard to tell what might be going on without those.  

Did you feel hypER just before your doctor discontinued your dose, or did you feel well or did you still feel somewhat hypO?
Helpful - 0
1766910 tn?1314194973
i was on 0.75 synthyroid i was feeling more energy when i was on it...not so tired ..and yes i have been getting blood work every 2-3 weeks...the surgeon said if my thyroid  remains hyper he will take the nodules out ..my dr thinks i also have fybromalgia and thats why i still feel tired and have sore muscles...(just went to see these drs yesterday)..i dont know ..just wanted to know if this was all normal..to switch from hypo to hyper like that? and what should i expect and what is actually going on inside my thyroid?...thankyou once again goolarra!!!...im learning as i go...one day at a time....
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Avatar universal
How much Synthroid were you on before he discontinued it?

Were you feeling hyper when you were still on Synthroid?

Do you have your latest FT3 and FT4 to post?

Has your doctor scheduled more labs to follow up after he discontinued your meds?
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1766910 tn?1314194973
thanks for your responce..yes my dr tests my t3 and t4 as well..they are in the highj range..but he said because my tsh is very suppressed i had to go off my synthyroid because im hyperthyroid now..its all so confusing to me...i wasnt on anything before synthyroid i was dianosed 9mths ago with hypothyroid and was put on synthyroid then..but ive been off it for 2 weeks now and still have hypo symtoms.where i am in ontario there is a shortage of drs who will listen to your feelings rather then numbers...thankyou once again for your reply...goolarra
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