no life anymore after thyroidectomy

[auctioneer]

i am sure all of you have had some sort of problems getting your thyroid levels corrected after surgery. well it has been over 3 1/2 years and they still can not get mine right...after surgery i started on 75 of synthyroid which at first i thought i was on speed --i felt great after surgery for about one month then the sleep started coming back...so each 6 weeks for the first year they increased my doseage by 25 each time...now up to 300 a day! at least at this point i can stay awake till evening time 8 or 9...my TSH levels until now were always in the high 40's to high 50's. i work in the operating room and i would be sitting there just watching what was going on and would fall asleep...that is not nice!
i was on 250 of synthyroid a day until jan of 07...i went to the doctors office and told the nurse practioner how bad i felt....sleeping 16 hours just to go to work for 8 hours and coming home and falling right to sleep...said something was wrong i would like them to do some blood tests either to check my iron or my thyroid...of course she with her all knowing attitude looked at my lab work from OCt 06 and said things look pretty good on here come back in july and we will check them then. thank god i had an appointment at the heart doctors that day also...i complained to him he did the test....then called me three days later telling me i literally had no thyroid in my system my level was 0.05 and i was close to a life threatening coma...he called the endo guy and that got the nurse practioners attention so they jump me up to 300 a day. needless to say i got a new endo doc also! who also found out i had almost no B-12 in my system--doing shots of that which make me feel somewhat better..
now on friday i was having some chest pain and since i work in a hosptial i went over to the ER only to find out the my TSH is 0.00 and my free T-4 was at 4.1...i am thinking this chest pain is due to the hyperthyroid levels but no one would listen to me so off to a bigger hospital where i had a heart cath this past monday and of course my heart is fine...but the heart doctor listened to my theory ....everything that has happened to me health wise has had something tied to the piturary gland---no periods hardly at all, facial hair, lactating breasts(still after 25 years hysterectomy), diabetes and thyroid cancer...when three major things in your life happened and they are all related to the endocrine system i would assume that the piturary has something to do with it...so i get a brain mri next wednesday and i hope they find something that can be fixed...i had some much trouble when i was young my parents took me to a doc who wanted to check out my piturary then but the folks would not let them he thought i had a tumor then.
this thyroid stuff has profoundly affected my life...i am usually too tired to do a thing, put on 50 pounds in the last three years(and even with zero tsh still gaining weight), dry skin, hair did fall out at one time at first, swollen eyes which have gone away since my tsh has fallen so low,cold feet are gone thank god...can not tell you how many times i got up in the middle of the night to put them in very hot bathtub water..
is this normal for everyone who has had their thyroid out the go thur all of this stuff...
do you stay this low in TSH post surgery normally i mean are they suppose to keep you this low cause you have no thyroid,,,
with the levels for the tsh at zero what would some of the compliants be for me ie chest pain, aniexty feeling, always feeling sick to my stomach
what is the high t-4 mean and what does that do to you...
if anyone else out there is going thur any of these things please let me know cause i tell you i am starting to get so depressed not that i would do anything crazy but i would like to know there is an ending to this misery

[searchingforanswers]

Hi Newbie,

You are not alone and now neither am I. See my recent post in Grave's Disease Section on Thyroid Realted Heart Issues.

I didn't have the thyroidectomy but I did do the RAI.

Basically I have the same thing. I have a TSH of 0.1 and I have been having heart issues for the last year. I have chest pains and pains running down my left arm for 6 months. I even had one trip to the ER when I thought I was having a heart attack and another time where my heart stopped beating for two or three straight beats and woke me up out of a deep sleep. That was scary. I went to the DR and after many test they couldn't find anything wrong with me.
I do martial arts and QiGong which is like Tai Chi for health and exercise and I occasionally see an accupuncturist. I have found it to be an alternative treatment to medicine for some of my injuries. Ironically, it was a visiting tradional chinese accupunturist that made the diagnosis that my thyroid was the cause of my heart issue. He did some type of scan on me with his hands and he told me that my thryoid was what was affecting my health. The funny thing is I didn't tell him about my thryoid illness. I only told him I was having chest pains. At first I didn't believe him but later I started to consider the possibilities and did some reseach on Google and found out that heart related issues are sometimes part of thyroid disease especially Graves Disease like I have. That is how I found this site and found other people who are suffering with the same issues that I am.

Back to the issue, I agree that you and I both must be over medicated. My normal range is 0.2-5.5 so at 0.1, I am slightly getting too much medication. You are getting even more. I think we should both ask our Dr. to adjusting the meds back a bit to slow things down. We may put on a few more lbs but that is a trade I will take over heart issues.

The hard part about this disease is that corrections in meds take months to see any change for the better or worse. Plus our bodies and lifestyle changes make our "right" metabolism dosage a moving target. This is just my opinion based on 4 years of trial and error.

Good luck to you in your search for a normal life. Even though you work in a hospital you may want to go to differnt doctors if yours is not helping you. I think I will take that same advice for myself. Just know you are not alone. We are all fighting the same battle.

Take care,

[Jen!]

Hey there Auctioneer

I was just reading your post and something really stood out to me - the fact your B12 levels were almost non-existant. Did you have Graves disease or Hashimoto's - autoimmune disease of thyroid? If not sure they can do a simple blood test checking antibody levels. I ask because it is more likely once you have one autoimmune disease that you could have another one... Have you heard of pernicious anaemia? Your body needs vitamin B12 to make new red blood cells - some people's bodies won't make enough of the enzyme that is required for absorbing vitamin B12 from the gastrointestinal system. Many of your symptoms fit... have a look at this site for more info...

http://www.pernicious-anaemia-society.org/

Your situation is complex because it seems that you have more than one thing going on which makes it hard to distinguish which problem is causing which symptoms. Eg. Fatigue is a symptom of both low thyroid levels and low B12 which could be due to pernicious anaemia?

Normally they only like to keep thyroid levels totally suppressed after thyroid cancer - the theory is that if the body is producing no TSH (thyroid stimulating hormone made by the pituitary gland) then any residual thyroid tissue left will be less likely to grow back.

It' good that your doc is being thorough and ordering the MRI. I just spoke with someone the other day who had a pituitary tumour removed - now they take a lot of medications to replace what the body can no longer do. The pituitary gland makes about 10 or 12 different hormones. They are now doing well but have to live with regular tests and medications adjustments for the rest of their lives.

When they do your thyroid tests are they checking the Free T3 as well? This is important as it is the more active hormone out of T4 and T3. It would help when reading your post if you could give the reference range as well... all labs have slightly different ranges depending on what methods they use and how their machines are calibrated.

Have you had your MRI and gotten the results yet? Looking forward to reading how it all went!!!
Best wishes!
Jen

[HoneyBee]

Is it standard to only dose a T4 drug and no T3 after thyroid removal?

I am a bit confused as to why you would not be receiving T3 hormones, but then again I am not very knowledgable about the long term effects of having no thyroid in general.

Seems if you are that tired it would be because you have no T3, but maybe it is different when you have no thyroid at all...?

[Kalimae]

I hope you will come back soon and post what your MRI revealed. I am post pituitary surgeries and the FIRST clue was that my TSH was always nile, nothing, nada!! Every doctor I saw said it had to be a lab error . . . . this after 15 different tests at about 3 different labs!! All the while they were making me think it was my FAULT!!! Doctors can be cruel. :(

I have what you call secondary hypothyroidism BUT I also have problems with the thyroid gland itself that are causing lots of issues. I'm thinking not only am I secondary hypo, but also primary hypo and hashimotos and hyper at the same time. Now figure all that out and we will be rich I say!!! LOL

Endocrine is the most complicated system in the entire body.

Oh, and I no longer have my adrenal glands either so now I have addisons disease.

Amy