VERY high TSH - Interested in range information

[sdp1988]

I am having trouble finding out range information on the net regarding TSH levels.  I have taken synthoid for several years and occasionally have to adjust the dosage.  I know what a level TSH is but at one point had a level of 32.5 - which was treated by adjusting the dosage.  However, due to recent HORRIBLE symptons, knew I needed to have it checked again (3 months earlier than my scheduled check).  It was at 85.8 which scares me to death after doing what little research I have.  I have been looking for ranges and what effects they may have on me at certain ranges (other than the obvious ones I have been feeling).  Last, how high can a TSH be and how close am I to it?

[Van1960]

I can only say from my own expierience .150mg of levo worked for me . I'm a 53 year old male and my TSH was 28. I'm around 250 now down from 275. This was my weight even though I work out and ride a bike several times a week. Not only does it work I don't feel I could survive without it. My TSH is also around 6. Be careful when they up your dosage. .175 mg made me sick so I convinced my doc to back down to .150mg. Find your balance on this hormone stuff and remember, how you feel is just as important as getting that number down.

[dianalyn]

Thank you very much! I had not read anything from Beverly Seminara  and it has proved helpful :) Most of the information about HE on the internet has not been updated for 5-10 years. But her research is up to date. Thanks again!

[gimel]

Have you seen this info and link to further info?

http://thyroid.about.com/cs/hashimotos/a/encephalopathy.htm

[dianalyn]

I recently had a TSH level of over 800. I can tell you that I thought I was dying, really dying. The level has gone down some and I feel a little better. I'm on 100mcg daily of levothyroxine. Also seizure & hypertension meds.
But, I have Hashimoto's Encephalopathy. Very rare, and even harder to find a doctor who even knows what it is! The symptoms are seizures, uncontrollable muscle spasms (arms & legs), aphasia (affects speech and word association), insomnia, and a few other things that would take to long to explain :).
I have been searching for ANYONE who has been diagnosed with HE just to talk to. I have been searching for 5 years now. PLEASE, if anyone has this disease or knows someone who has it I would welcome any type of communication about it.
This forum is great! Thank you so much for sharing :)

[Chrislippard679]

I have noticed that there is no mention of what kinds of replacement meds are available for hypothyroidism.  If you are taking your medicine like you are supposed to and your numbers are still high, you may want to ask your doctor for a different type.  When my numbers were constantly reflecting >100, my doctors first increased my dosage then took me off of synthroid and put me on Armorthyroid.  The difference is that synthroid is a synthetic blend and Armorthyroid is not, it is taken from a pig and not made in a lab.  That could be the difference your body needs.  For me, it wasn't the type of pill, but that I wasn't absorbing period.

[Chrislippard679]

My TSH was at one point 273.45 and put me in the hospital for 7 days.  During that 7 day stent in the hospital, I was given synthroid through my IV.  The Dr. had me do an absorption test to see if I was getting anything from PO meds.  After a 2,3,4,5 and 6 hour blood draw, it was discovered that I wasn't absorbing my medication via PO.  I was discharged with orders to receive 500Mcg intravenously once a week.  My numbers went down drastically for the first 2 months.  The Dr. started me on 100Mcg PO daily in addition to my weekly infusion to see if there was a difference in my levels.  Instead of going down, my numbers have started creeping back up again.  The Dr. increased the PO to 200Mcg daily and still on the weekly infusion and my numbers are still creeping upward.  Not sure what the next step will be yet.