Hypo confused w/ questions

iVillage Member
Registered: 11-06-2003
Hypo confused w/ questions
7
Tue, 01-18-2005 - 9:21pm
Hi everyone. I'm new to this board but, not to ivillage. You all might think I'm nuts after you hear me out. Please be patient while I rant a little. I was diagnosed about 10 years ago while pregnant. OB didn't give much explanation or send me to anyone. Started me on Synthroid. Have been living with as is since. Often tired, No sex drive, cold, dry skin, moody. I changed Drs about 5 years ago and she has tried to help. She switched me over to Levoxyl. Last year she sends me to an endo-told me she just didn't know what to do anymore. Well, the endo tells me my TSH is about 3.5(?) or so. Upped my lev. from .175 to .200. I never felt any better. TSH still hovers around the 3 range. Last contact with the endo and she said..."I don't know, you're taking a pretty high amount of lev and I don't want to increase it" But then she never offer to change, try anything else-Nothing!! She did tell me that some sort of antibodies were increased and that show that I was developing Hashimotos. I got no further info on that subject. Needless to say, I haven't been back since. I live in a rural area with not much in the way of local specialist. I know I should know more about what is going on with my body. I just need some help with finding out what I should know about my "condition" All that I read about T3 and T4 gets me a little confused. I went to the Dr Fri, and she ran a "Thyroid Panel". Of course she called today, but the machine cut her off so I don't what she found out. I did catch that my levels were low. Help me ladies.... What do I need to be asking here? Do i need to change meds? What has worked for you? I do know that optimum levels are now below 3.0 instead of 5. Please tell me someone out there has been in a similar boat out there. Thanks for listening. Looking forward to your input.
Leslie
iVillage Member
Registered: 01-17-2005
Wed, 01-19-2005 - 10:16am
Hi. It must be difficult living in a rural area where you don't have a selection of doctors. However, this is what I know. A TSH level of 3.0 is high. My endo has said that most people feel best with a TSH at 1.0. Another thing you need to look at is your medication! If you are taking a T4 replacement only (which I know levoxyl is)you may want to ask your doctor to try a T3 and T4 replacement. You can do this three ways. 1. Switch to the natural Armour thyroid or 2. Switch to Thyrolar which is a synthetic T3 and T4 combined in one pill or 3. Continue on your Levoxyl and ask for Cytomel which is T3 by itself. Ive heard that some people have a hard time coverting T4 to T3 as their body needs. And if your not giving your body what it needs of course your going to feel miserable. I hope this helps. It's worth a try if your not feeling good. Take care.
iVillage Member
Registered: 06-22-2004
Wed, 01-19-2005 - 11:29am

Hi:

First, I absolutely DO NOT think you are NUTS (LOL!)... Your post sounds perfectly normal and reasonable given your situation.
Definately get the results from your thyroid panel so that you can detect what the issue might be. And have your endo go over the results with you. Leaving it on your machine is, well, not cool. (but maybe what got cut off was good information, so definately follow-up on that).
Your dose does sound pretty high; but I have heard that those of us with Hashimoto's will often have higher doses. Why were you switched to Levothroid? I've heard of people being switched from Levo to Synth to try to get a better result, but not the other way around.
Good luck. I think the best thing is to be persistant and not be afraid to ask for another opinion.

Take care,
Dee

iVillage Member
Registered: 11-06-2003
Wed, 01-19-2005 - 1:24pm
Thanks for the replies. I will say that it is my GP that is trying to help me with this. I never went back to the endo. I actually just talked w/ the GP. She called during lunch. I think that is pretty cool. She's great in fact, it just that in this area she hasn't been able to help. She was in her second office so she didn't have my chart but does remember that my levels were up. She's putting in a referal to another endo, so maybe I can start to get straightened out. It was nice to see the T3/ T4 thing simplified. I don't need to know how it works, just WHAT works. And that helped alot! I know I hear alot of good things about Armour, but apparently it isn't used that much. Wonder why?
Thanks again for the input. I would still like to hear more. I'll let you know what the doc says-soon I hope.
Leslie
iVillage Member
Registered: 11-09-2001
Wed, 01-19-2005 - 11:23pm

Hi Leslie - many doctors won't prescribe Armour thyroid because they feel the T3 isn't necessary. And because it's a natural thyroid hormone, taken from pig's thyroid, that it isn't necessarily balanced from one pill to the next. BUT ... many people have done very well on Armour when they didn't do well on synthroid or levoxyl. So the addition of T3 might be a good thing for you and it's definitlely something to discuss with your new endo.

I don't know if you have to worry so much about the actual dose of thyroid hormone that you're taking. The biggest worry is to be under or overmedicated but if your TSH level is somewhere between 1.0 and 2.0 and you feel good, then that's the dose for you!! Doctors can also vary the dose so that you aren't taking a higher dose every day. I'm taking
137 mcg Mon. through Thurs. and 125 mcg Fri, Sat and Sun. I think a good endo can really help you with that. It's important to find someone who will listen to your symptoms as well as realize that your tsh needs to be down between 1.0 and 2.0. My last test came back at 1.6, the lowest it's ever been since I've been diagnosed. But I still didn't feel good. My doctor asked me how I was feeling, didn't just rely on the test results. Then he put me ont he schedule I'm on now. I'm just bringing up my own experience so you can see that there are a lot of different ways to take medication but it's very important to have a doctor that listens!!! Let us know how you're doing and what happens, ok?? Cathy :)

iVillage Member
Registered: 11-06-2003
Thu, 01-20-2005 - 10:02am
I know exactly what you are saying about the not feeling well. Sometimes I haven't even been able to describe it. I just know I'm not myself. Although, I've been feeling so crappy(excuse the phrase)for so long I'm beginning to think this is "myself".LOL!! My levels have never been below 3.5 or so. My GP has listened really well, maybe I can find someoen else who will listen just as well. I probably won't know anything until tomorrow(Fri)about who I'm going to see, so say a prayer for me ladies that I can hook up with someone competent and caring. I'll let you know.
Thanks for all the great info,
Leslie
iVillage Member
Registered: 01-20-2005
Thu, 01-20-2005 - 5:11pm

HI there. I'm new to the board and the iVillage. I've been searching the web for days trying to figure out what's going on with me. I was undiagnosed for at least 3 years, maybe more. I couldn't use my hands 3 summers ago because my wrists hurt so bad. Gained weight, tired, forgetful, etc, etc. I was finally diagnosed 2 years ago with hypo. I got leveled off pretty quickly, lost 20 lbs, started working out, felt fabulous!! Well, this last May I started not feeling well. Lots of stress with sick uncles! By mid June my level was at 64!! I was exhaused, couldn't think to even make dinner!! Depressed. They then changed me from Levoxyl to Synthroid, put me on birth control pills, I had a fantastic Oct and Nov, then again in Dec I started down hill! Now they tell me I am peri-menopausal, eye doc says I need bi-focals, I have dry eye, all these symptoms of Hypo!! The endo MD I saw poo poo'd the 64 level. He said it was because of starting birth control pills. I started them maybe 1 week before blood was taken. I was feeling awful and you know how it feels to not be heard!!
I'm today making a call to a new endo. Hopefully they can see me soon! It's so unlike me to feel so tired!
Enough about me. I have to say it's great to find a place where people can actually understand how you feel. I feel like I'm missing out on life because I have to cancel due to not feeling good. It validates you somehow.
Anybody else have the opportunity to not only deal with hypo but also hypo and Menopause??

Feeling like I'm hitting a brick wall!!

Diana

iVillage Member
Registered: 08-26-2004
Fri, 01-21-2005 - 5:58pm

Cathy-

Now I have a question. My last test had me at 4.5 or so. My CNM thought the level was "normal" because it was under 5. I feel fabulous. I am walking to work everyday (10 long Salt Lake City blocks each way) plus working out with weights, going to work full-time, taking care of my two boys. Am I to understand from your statement that my levels are still high and that if I can get it even lower, I'll have even more energy? Cause I'm always open to more!

Amanda