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Old 09-16-2004, 06:03 PM   #1
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Question 1.35 with hyper symptoms.. help?

I'm coming up on my first year of being diagnosed with hypothyroid. I started out with a TSH of 45, got it down to 27, had a blip at .2 (yikes! rapid heartbeat, anxiety, couldn't sleep..felt like I'd been drinking pots of coffee..) and then I thought I was good. I'd been taking 100 mcg of synthroid for almost 2 months, and all of a sudden, I started feeling anxious. stressed. trouble sleeping. tight chest. out of breath? (mostly it feels like a tight chest to me.) after about 3 days, I mentioned it to my husband. he thought my TSH must have been off, since these symptoms are nearly identical to the ones I had last time I went hyper. I stopped taking my meds, and that day went and got my labs done. ..TSH 1.35. I'm off my meds for day 2 now, and still feeling a little stressed, though maybe slightly less so.

My doctor thinks it's not thyroid related,(just anxiety?) but is going to refer me to a endo. Any thoughts? I hate to think this is all in my head..

thanks a bunch, guys. you keep me sane when I'm feeling quite the opposite.

-sedwa

 
Old 09-16-2004, 06:10 PM   #2
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Re: 1.35 with hyper symptoms.. help?

First of all you should be basing treatment on the FREE T3 and FREE T4 not the TSH, once you are on treatment the TSH can become pretty irrelivant. The FREE levels are your actual thyroid hormones and those are the ones you want to watch, the TSH is only a pituitary response.

I think it would be best to get your FREE levels checked and see what is really going on, the TSH can be very deceiving, chances are one of your free levels is off.

Both of the FREE levels need to be in the upper 1/3 of the lab range, just being in range is not good enough.

Keep us posted.

 
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Old 09-16-2004, 09:44 PM   #3
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Talking Re: 1.35 with hyper symptoms.. help?

Quote:
Originally Posted by dea4
First of all you should be basing treatment on the FREE T3 and FREE T4 not the TSH, once you are on treatment the TSH can become pretty irrelivant. The FREE levels are your actual thyroid hormones and those are the ones you want to watch, the TSH is only a pituitary response.

I think it would be best to get your FREE levels checked and see what is really going on, the TSH can be very deceiving, chances are one of your free levels is off.

Both of the FREE levels need to be in the upper 1/3 of the lab range, just being in range is not good enough.

Keep us posted.
should she go right off her meds, dea, or just reduce them? i think reduce? until she has the free T4/T3 done ...

jb
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keep the faith ...

Last edited by jinglebts; 09-16-2004 at 09:44 PM.

 
Old 09-16-2004, 10:37 PM   #4
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Re: 1.35 with hyper symptoms.. help?

Good question. should I go cold turkey till next week, when I'll see an endo (maybe?) I have no idea how long I'll have to wait.

 
Old 09-17-2004, 05:10 AM   #5
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Re: 1.35 with hyper symptoms.. help?

Quote:
Originally Posted by sedwa
I stopped taking my meds, and that day went and got my labs done. ..TSH 1.35. I'm off my meds for day 2 now, and still feeling a little stressed, though maybe slightly less so.
Sedwa, I was reading something by Dr. Lowe a few days ago on the use of only lab tests to determine treatment. There were some studies done that showed a person's TSH and FT numbers can change w/in the space of 30 minutes by as much as 13% - your TSH could have been lower, earlier.

That being said, I agree that you need to have your FT's measured for a more 'accurate' picture of what is going on. You should also be listening to your body.

Nat
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Old 09-17-2004, 07:10 AM   #6
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Re: 1.35 with hyper symptoms.. help?

I would get bloodwork done before lowering meds so as to know exactally what my FREE levels are doing.
The TSH is highest in the morning, it can fluctuate by several points throughout the day. The FREE levels also fluctuate, the FT3 probably the most since it is short lived and your body uses it as needed, its the one that gives you the energy to function, so if its low you will feel tired and fatiqued, if its high you will feel like you have too much coffee.
However, the following can cause that as well......
Your FT4 needs to remain at a pretty consistant level, if you don't have enough meds the body will convert as much T4 to T3 to keep your body going, this can cause a lower T4 and a higher T3 which can also cause all sorts of symptoms including hyper ones.
Since all we have to go by is your TSH its hard to know whats going on with your Free levels, you may actually not have enough meds causing the flip flop on the FREE levels which can cause those hyper symptoms or you may have too much meds causing too high levels on both FREE's, the only way to know is by getting the FREE levels tested, but since they can fluctuate, I'd get as accurate a reading as possible and not mess with the meds till I do. But, its up to you.


Keep us posted

 
Old 09-17-2004, 07:45 AM   #7
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Re: 1.35 with hyper symptoms.. help?

I had my 2nd visit w/my endo after being dx'd w/Hashi's in June of this year. While my TSH tested at 3.02 (which would be normal in a lot of ranges) my antibodies were flagged as high). I was prescribed 100mg of levoxyl. I had new bloodwork done 8 weeks later and my TSH was .126. He lowered my levoxyl to 87.5 and that's where I stand now. I go in for more bloodwork in 2 months.

I asked my endo about ever having the rest of my levels tested and he said no, not unless he was going to be giving me a combination. I was surprised considering he's so up to date on everything else. There aren't very many endos in my town, so how do I go about finding one who will run the tests? OR are there reliable self -testing ones ont he market? MY GYN is very willing to run any test I ask for, but I think she'd think it strange for me to ask her to run those when he doesn't think it's necessary.

Another thing, why isn't there one "standard" TSH range level? My mom just had her TSH done and it was 5.15 (which would be high on the range my lab uses - their high end is 4.67) yet it was still in the "normal" range of her lab's. She has all the classic symptoms - fatigue, severe constipation, ridges in her nails, etc, etc, yet her Dr refuses to do anything about it.

 
Old 09-17-2004, 11:41 AM   #8
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Re: 1.35 with hyper symptoms.. help?

Quote:
Originally Posted by EMarieD
I asked my endo about ever having the rest of my levels tested and he said no, not unless he was going to be giving me a combination. I was surprised considering he's so up to date on everything else. There aren't very many endos in my town, so how do I go about finding one who will run the tests? OR are there reliable self -testing ones ont he market? MY GYN is very willing to run any test I ask for, but I think she'd think it strange for me to ask her to run those when he doesn't think it's necessary..
Well he's not as up to date as he should be. You can get your own testing by going through Healthcheck USA, its an online service where you pay for the tests you need through them and then go to a participating lab near you, the thyroid panel 2 will test the free levels and costs about 85.00. Or, you can call the endo's in your area and ask if they treat thyroid problems based on the FREE levels or the TSH, or...you can find a DO or naturopath that will test Frees and treat the thyroid, a lot of times they know more then Endo's.

Quote:
Originally Posted by EMarieD
Another thing, why isn't there one "standard" TSH range level? My mom just had her TSH done and it was 5.15 (which would be high on the range my lab uses - their high end is 4.67) yet it was still in the "normal" range of her lab's. She has all the classic symptoms - fatigue, severe constipation, ridges in her nails, etc, etc, yet her Dr refuses to do anything about it.
There is a standard put out by the AACE which is .3-2.5, but not all labs or drs have bothered to update their ranges, or their way of treating the thyroid, many still believe TSH is the only way to treat. TSH is a pituitary response, I'd much rather be watching the actual thyroid hormones rather than a test that just tells what it thinks my thyroid is doing, which is basically what the TSH does, the FREE levels are the actual hormones.

Last edited by dea4; 09-17-2004 at 11:46 AM.

 
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