# Endo says I'm now hyper - please help



## lillyjackmom (Mar 13, 2010)

I had my thyroid out about a month ago. I felt pretty good a few days after surgery and then all of the sudden about a week later I had no energy. I'm talking barely functioning kind of low energy. I also have insomnia, sweats, muscle pain and nausea. I'm mostly concerned about my energy level. I called my endo and asked him to run my labs early because I just knew my meds needed to be increased. His nurse called today and said I was actually hyper and my meds needed to be DECREASED. Apparantly my TSH is .202. I am currently on 112 mcg of Levoxyl and they are decreasing it to 100 mcg. I have no lab ranges right now. She said everything else was normal. I asked her to send me a copy of my labs. Is extreme fatigue a symptom of hyperthyroidism? She said what is going on may not be due to my thyroid at all. I'm sitting here sobbing because then what is it?! I have never felt so awful. If anyone has any suggestions it would be greatly appreciated. I'm not sure where else to turn and I'm really scared. I'm sorry I don't have any other results or ranges at this time.

Stacie


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## lillyjackmom (Mar 13, 2010)

I just looked up my lab ranges online and it looks like for TSH it should be .45 - 4.5. Thanks for your help.


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## CA-Lynn (Apr 29, 2010)

My lab uses a reference range of 0.4 - 5.5 - close enough.

I think most of us go through dose-tweaking in the beginning. Good to know your doctor is on the ball and remedying the situation.


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## Lovlkn (Dec 20, 2009)

lillyjackmom said:


> I had my thyroid out about a month ago. I felt pretty good a few days after surgery and then all of the sudden about a week later I had no energy. I'm talking barely functioning kind of low energy. I also have insomnia, sweats, muscle pain and nausea. I'm mostly concerned about my energy level. I called my endo and asked him to run my labs early because I just knew my meds needed to be increased. His nurse called today and said I was actually hyper and my meds needed to be DECREASED. Apparantly my TSH is .202. I am currently on 112 mcg of Levoxyl and they are decreasing it to 100 mcg. I have no lab ranges right now. She said everything else was normal. I asked her to send me a copy of my labs. Is extreme fatigue a symptom of hyperthyroidism? She said what is going on may not be due to my thyroid at all. I'm sitting here sobbing because then what is it?! I have never felt so awful. If anyone has any suggestions it would be greatly appreciated. I'm not sure where else to turn and I'm really scared. I'm sorry I don't have any other results or ranges at this time.
> 
> Stacie


Stacie,

Your endo is dosing you on TSH- WRONG thing to do. You have all the classic symptoms of insufficient thyroid hormone replacement.

Another point I would lke to mention never ever take your doctors "word" that all else is "normal" - get copies of all lab work and check yourself. I was told I had "normal" labs by a GYN for 2 years when I clearly had active Graves disease and it's symptoms.

Stay on your current medication and insist on having Free T-4 and Free T-3 tests run.

I have dumped 4 doctors post op who only will dose my replacement on TSH. You simply cannot to that when you have thyroid disease.

I shall stop my rant- it just makes me so furious when I hear doctors treating their patients like this.


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## lillyjackmom (Mar 13, 2010)

Thanks guys!!! Lovlkn - I completely agree with what you are saying. I have copies of all my labs coming in the mail. Here is what also bothered me - he also didn't want to listen to my symptoms or even see me. They had scheduled an appointment for me for Thursday and once I talked to his nurse on the phone he cancelled the appointment. His nurse also said to just take the lowered dose and go see my GP. I am already trying to get a referral for another doctor. This doctor has been unwilling to discuss symptoms from the start and only treats based on blood work alone. You have no idea how much I appreciate everyone's support and understanding. I'm so frustrated!!!!


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## hillaryedrn (Dec 14, 2009)

Ugh, that is frustrating when doctors won't listen to what you are saying! There is no reason for a doctor to cancel an appointment just because you have spoken to the nurse!! You definitely need a new doctor!


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## Lovlkn (Dec 20, 2009)

lillyjackmom said:


> Thanks guys!!! Lovlkn - I completely agree with what you are saying. I have copies of all my labs coming in the mail. Here is what also bothered me - he also didn't want to listen to my symptoms or even see me. They had scheduled an appointment for me for Thursday and once I talked to his nurse on the phone he cancelled the appointment. His nurse also said to just take the lowered dose and go see my GP. I am already trying to get a referral for another doctor. This doctor has been unwilling to discuss symptoms from the start and only treats based on blood work alone. You have no idea how much I appreciate everyone's support and understanding. I'm so frustrated!!!!


Do yourself a favor and just go to your GP and ask for the right tests - there is absolutely no need for an endo to be involved at this point. Even if there was this guy ou are seeing obviously has extremely poor judgment - he doses completely on TSH and won't even listen to your symptoms, who needs that?

I was amazed post op how blind my endo became to obvious hypo symptoms and only concentrated on TSH which is what drove me to a GP for replacement treatment. You may find yourself going to several GP's until you find one to work with you on dosing but don't give up -ask for prescription refills on every visit so you don't find yourself short on meds while doctor shopping.

Sorry you are frustrated - go pick up your meds they called in to "cover yourself" until you can get into a GP willing to work with you.


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## Andros (Aug 26, 2009)

lillyjackmom said:


> I had my thyroid out about a month ago. I felt pretty good a few days after surgery and then all of the sudden about a week later I had no energy. I'm talking barely functioning kind of low energy. I also have insomnia, sweats, muscle pain and nausea. I'm mostly concerned about my energy level. I called my endo and asked him to run my labs early because I just knew my meds needed to be increased. His nurse called today and said I was actually hyper and my meds needed to be DECREASED. Apparantly my TSH is .202. I am currently on 112 mcg of Levoxyl and they are decreasing it to 100 mcg. I have no lab ranges right now. She said everything else was normal. I asked her to send me a copy of my labs. Is extreme fatigue a symptom of hyperthyroidism? She said what is going on may not be due to my thyroid at all. I'm sitting here sobbing because then what is it?! I have never felt so awful. If anyone has any suggestions it would be greatly appreciated. I'm not sure where else to turn and I'm really scared. I'm sorry I don't have any other results or ranges at this time.
> 
> Stacie


Yes; the symptoms you describe can be from over-medication. Especially feeling exhausted. Hyper is a misnomer at times. Your body is going at such a high speed even when you are resting that it exhausts you.

Did your doc NOT run the FREES? Low TSH does not necessarily mean hyper. I am wondering how your ferritin is? Those very same symptoms could be from low ferritin (iron storing protein.)


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## lillyjackmom (Mar 13, 2010)

He only ran one of the Frees. I'm trying to remember from the lab slip, but I think it said Free T3. It also said complete metabolic panel and TSH that's all. I have the results coming to me in the mail. I'll post when I get them. I was going to talk to him about the other Free and the Ferritin when I saw him but they cancelled the appointment. 
I appreciate all of you calming me down. I do expect some tweaking with the meds but I have had such poor luck with doctors, like you all have , that I don't trust them anymore and it kills me when they take for granted how I'm feeling. I'm sick of people telling me my symptoms shouldn't exist based on blood work and that I'm just tired because I have kids. I'm kind of at my wits end at this point because I just feel so crappy. I know you all totally get it because you are either there or have been there. I just want to feel better because it makes me sad for my kids to not feel well. The fatigue is so awful right now that just getting up and getting dressed in the morning seems like an insurmountable task. Ok..... I'm stopping my whiny rant. )))))


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## christine (Jul 13, 2010)

Stacie,
Just learned about a book by Dr. Datis Kharrazian recently published called:
"Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal"...wish you'd read it before you had your thyroid removed; but there could be some help for you since they treatment involves caring for underlying immune issues that create the thyroid problem in the first place. I'm reading it now and it's pretty fascinating stuff....good luck!
Christine


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