Looking for Additional Feedback.

[authrjenn]

First of all, thanks for your help! Let me start by saying that the labs here use 3.0 as the TSH norm. Before my TT surgery my TSH  was @ .32677 The docs here believed I was hyper-T. Seems I  fluctuated btw hypo, hyper and normal for over 4 years before anyone knew I had a thryoid problem. In January, I had a total Thyroidectomy w/ no complications until the surgeon threw me on 100 mcg of synthroid the day after my surgery. ( even though my post labs indicated my levels were normal) My heart went crazy, my body felt like it was on fire and my B/P topped out at 188/115. Furious, that he almost killed me, I stopped my meds for one week and slowly re-introduced the meds back into my system @ 50 mgs a day.  It took about 10 days before the horrible symptoms began to disappear and I began to feel like me again! By week three my labs came back normal at 3.0. ..... Of course after telling my regular doc what had  happened and about my decision to place myself on 50mcgs, he became concerned and called an ENDO. He said that my levels were due to drop any day  and to start taking the prescribed 100 mcgs immediately! After starting the recommended 100mcgs, I started to go hyper again within 7 days and all of the previous symptoms returned, only this time it cost me a trip to the emergency room due to high B/P 188/105, racing heart, shortness of breath etc. The ER doc said my TSH was LOW at 17. She said I needed to raise my TSH and increase my meds. She also decided that I had panic attacks. I tried to explain that I was fine as long as I did not try and go to fast and take 100mcgs of synthroid. It went in one ear and out the other! After 7 hours in the emergency room, and being told I needed anti-depressants, I had a come to Jesus meeting with myself and decided that I would probably have to to go this alone. Although I have never had a panic attack in my entire life, and no mental problems whatsoever I was offered Xanax on my way out of the hospital. Of course I declined.. The last thing I need is another medication to mask how I am feeling..After returning home, I spent many hours reading everything I could about this condition. Meanwhile I stopped all of my meds for 7 days to decrease my levels. It took another 6 days to feel normal but I had energy, good sleep, good appetite etc. Right now I am in week 6. After today, I take 75 mcgs of generic synthroid. I have no symptoms except dry skin and a slight headache. After eating I get hypo-glycemic for about 2 - 5minutes. I can tell my body is working hard to metabolize the food I ingested so I just wait it out. So far so good. I am aware that starting and stopping is not a good idea, but because of the over-dosing problem I felt I had no choice. yesterday I went back to my regular doc for my six week blood work and my labs dropped from 17.0 to 7.5  I know the new standards say I am still hypo, but I don't feel bad.... I am not perfect but I have no anxiety, racing heart, high B/P etc  Anyone have any idea why I feel good when my labs say I should be hypo and miserable?

[authrjenn]

If you don't mind, how old are you and how much do you weigh. I did the math too, and at 50 , I should be taking 88 mcgs of lexothyroxine not 112 like they want me to take....

[authrjenn]

Thank you for your input...and your concern. There were two articles that I read that helped me with the dosing problem. One of them was on about.com and the other was in the precautions section on the synthroid website. In cases of toxicity, it recommends a lower dose of meds. I am over 50, so I should never have been given 100mcgs of a medication when I had a normal TSH level. That is a toxic overdose and could stop my heart.The website for Synthroid states that patients over 50 should be started at 25-50 mcgs a day, with gradual increments in 6-8 week intrevals, AS NEEDED.The article goes on to say that gradual increases should be at 12.5-25 mcgs  until the patient is euthyroid.  In patients with HYPO_THYROIDISM which I had when I was at 17.0 the dose would be the same expect it would be increased SLOWLY between 2-4 week intrevals. The endo I had was a nut case. Here I had normal levels and he gives me 100mcgs of Synthroid? He could have killed me. Then after I had all of the horrible symptoms he recommends continuing with the medication at the same dose? Now granted I don't have an MD behind my name , but I am smart enough to know when I am being poisoned.....its not rocket science!

[ChitChatNine]

I get anxiety symptoms with too much Synthroid so I totally understand where you are coming from!!!!!!  Therei s another option your Endo may try with you and that is taking larger dose of Synthroid ev. 3rd day or even on Sunday's only as it has a trickle effect the rest of the week.  My TSH before surgery was around 3.0 with some symptoms (had 1/2 removed bcz of nodule) and with Synthroid I am GREAT @ TSH 1.5 on 88mcgs of Synthroid.  I cannot tolerate 100mcgs nor an I tolerate add'l higher med 1-3 times a week!  Even just on Sunday!  I would get a brain fog and forget words with word retrieval issues along with anxiety!!!!  Heart palps, too.

I agree out of the cage 100mcgs was too high bcz there are "stores" of hormone around for at least 2 weeks usually.

It took 10mos to fully adjust my dosing ... yes, 10 mos .... tweeking was the hardest part but I feel better on the fake hormone than the real thing LOL and my other side stopped working after surgery (20% of the time) so I'm on Synthroid for the  long haul.

Cheryl

[AR-10]

The lab you use has a reference range of 0.3 to 3.0, correct?

I have never heard of a lab that uses 3.0 as the TSH norm.

Your TSH should be held at 1.0 or 1.5. A level of 3.0 is high enough to give you symptoms of Hypo, just as much as 17.0 or 7.5.

You may feel good now, but you are damaging your body holding your TSH at 7.5.

Maybe Synthroid is not the right drug for you, but self-medicating without three or four years of medical school is dangerous.

what did the Endo say? did he/she explain the consequences of being out of balance constantly? Did the Endo offer any opinions of why you are not tolerating the high dose of Synthroid, or if another brand might help, or suggest anything?  

I don't know how "total" your thyroidectomy was, but your surgeon's expectations were based on normal results of removing most of your thyroid. He may have jumped the gun a little putting you on it the next day. You should be needing more hormone than you are taking. Why you cannot tolerate it is a discussion you should have with your Endo.

Maybe you need to start slow and work up, as you did, but you should not stop at a TSH of 7.5 and ignore your doctor because you feel good. Somewhere in there is a middle ground that will not mess up your body. A diferent medication, or something.

Maybe you're an alien? A TSH of 7.5 is not good. Normally I would agree with your philosophy of treat for symptoms and not numbers, but in this case I think the longer your TSH is high, the worse you will get.

But then, you feel good and I feel like doo doo.

[Totie]

I know what you mean about being offered an anti-depressant. My last dr. visit for my symptoms was ended with a prescription for Prozac. I laughed and threw it away. I have never been depressed IN MY ENTIRE LIFE. I had my entire thyroid removed back in 94 as well. (Hyperthyroidism/Groiter/Graves Disease)  I have the constant leg cramps, night sweats, lost weight (but still eating), don't sleep much (but never have since my thyroid problem). Have cold intolerance. Skin always dry, but you know what, according to my dr. there is nothing wrong.....I guess i give up, until something more physically is apparent I won't go back. Now i don't know about the stopping of the medication, I take 125mcg daily, i have been on that dose for about a year now. Before that i was taking 200mcg daily (dr. prescribed of course) for 13 years. The last time someone told me it was all in my head, six months later I was hospitalized immediately by the guy who did the thyroid scan. My thyroid had enlarged that radiation iodine was tried, but it was too late, surgery was the only option.  Just BE VERY CAREFUL with the medication, your thyroid hormones controls your HEART.