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Managing Hypothyroidism

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Thyroid Disorders
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Tirzah
Veteran Member
Joined : Jul 2008
Posts : 2323
Posted 10/19/2009 7:42 PM (GMT -8)
Hi all,
It's been a while since I've posted here, but I'm beginning to think that maybe this thyroid stuff is more complicated than I first realized. My thyroid has been crazy for a while, but I was always told that since I was at a 26-28, I could not be medicated. I have a new & wonderful doctor who believes otherwise & I am so grateful for that. She started me on meds in June after I lost about a third of my hair. It's growing back now & the Synthroid was initially amazingly helpful -- I went from deep depression to feeling like finally my "battery" was fully charged & I was eager to take on life.

But now it's getting messed up again & I'm frustrated. My doc says that we cannot change my meds every month. So I guess I need to learn how to manage the in between times until we find the right balance (if there is one). I'm hoping all of you out there with more practice than I have can share some ideas about how to manage those high & low days so they don't interrupt my life so much. The low days are the worst, but I was feeling more energy & took to scratching. My doc suggested maybe more physical activity (which I will try, but I also have severe back probs) & a healthier diet -- whatever that means. I want to give this 100%, but I feel a little lost.

Any advice?


thanks,
frances
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jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted 10/19/2009 8:57 PM (GMT -8)
Frances, it takes six to eight weeks (more for some of us) for the medication dosage to stabilize after a dose change. It can be pretty frustrating, and it actually took about two years to get me stabilized on the right dose. My doctor was checking quarterly at first, then every six months. Now, after 15 years, I get it checked annually unless I have a problem.

Topical benedryl or steroid creams can help with the itching. When I was hyper, I chomped on ice like a fool; I later figured out I did that to help keep my core temperature down. It's probably much wiser to keep ice-cold drinks by your side and sip them regularly. Be sure to dress lightly if you're feeling warm, and cotton clothing lets your perspiration evaporate and cool you.

I always had more trouble with the hypo times also. I did find that it helped to limit my salt intake. Drinking hot beverages helped when I was freezing, and I kept a heavy afghan with me all the time. I word socks to bed because my feet were icicles. But there's only so much you can do about the tiredness. I used to fall asleep in my chair at about 8:00. Try to sleep when you need to.

I agree with your doctor that some gentle stretching and cardio may help. I have lots of joint and muscle issues, so I go to a hospital wellness center. They have equipment that lets me do my cardio non-weight bearing, and my trainer started me with very gentle moves and little to no weights. If that is still too much, water therapy works for almost anyone because of the buoyancy your body has in the pool.

I hope you get stabilized and feeling better soon.
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couchtater
Elite Member
Joined : Jul 2009
Posts : 14475
Posted 10/20/2009 2:42 PM (GMT -8)
Frances, you sound like me. I've been on synthoid for three months now and I still get a wave of blue every now and then. I've been on 100mg of synthoid since day one.
I read somewhere on here that someone was "brittle" and their levels change constantly. You maybe "Brittle". Do you see an Endo or a PC? Endos are good with "brittle" thyroid people.

Stick around a let's talk.

Joy
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Tirzah
Veteran Member
Joined : Jul 2008
Posts : 2323
Posted 10/20/2009 5:59 PM (GMT -8)
Thanks, Joy & Judy. Hopefully I'll get even more ideas, but I really appreciate what you've shared with me.

Joy, I see an internist who is extremely knowledgeable about thyroid disorders. She's actually better than some of the endo's I've talked to. There are some that are better -- but their waiting list is 6+ months long. It may come to that point, though. I've never heard about this brittle problem. I'll have to look into that.

Judy, I actually found out that the systemic fungal infection has returned -- ugghh. Apparently it is related to hypothyroidism. I don't understand how. My PCP gave me something to read about it back in June -- I'm sure it's around here somewhere. ;) So I'm trying not to be scratching so much. I got a special soap & a topical cream that is supposed to help. I've used them in the past, but it's harder when it's on your hands. I need to clean my workspace, keyboard, desk, all that stuff with Lysol this week. I'm also waiting to get my anti-fungal shampoo delivered from the mail-order pharmacy -- probably that's where it came from -- again.

This is all so frustrating. Unlike textbook hypo, I am really fighting hard to keep (and ideally put) weight on. I just feel so sick. I'm waking up in the middle of the night burning up, but the rest of the time I'm freezing cold. I set my thermostat nice & chilly and I just put on a short lightweight nightgown -- so I don't understand how I'm overheating. Maybe the thyroid medication is wearing off my then? I don't know. I just need to figure out how to make it until those 2 years go by.

I just feel like I'm crazy -- first I'm hot, then I'm cold; first I don't want to eat a thing, then I'm ravenously hungry; first I'm ready to dissolve into tears, then I have so much energy I overdo with my activity level and throw my back out. I feel like my body is having a tug-of-war with itself!

thanks again for your support,
frances
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couchtater
Elite Member
Joined : Jul 2009
Posts : 14475
Posted 10/22/2009 5:05 PM (GMT -8)
My sister is a medical records coder and she has heard of some people becoming "brittle" with their thyroid. She said they have trouble staying leveled. They come to the ER all the time at her hospital.
I go to bed with socks on and wind up pulling them off before the night is over. I'll be okay everywhere else with a light sheet but get cold (but not my feet) and have to pull up the covers. Then I'm hot by morning and am kicking the covers off.

I'll be fine and not want to eat, then I will crave sweets and comfort food.

I get moody in a flash. I'll be laughing, then sad, then grouchy, and back to laughing. My niece is always telling me to chill and not get so wound up. I don't realize I'm grouchy until I speak.
The other day she made a silly mistake and heated up a cup of hot chocolate with a metal spoon in it. I told her to quickly get it out before it started sparking. But it came out as a scream! She stood there looking shocked at me. Then slowly walked over to the microwave and pulled it out. She told me to chill that it was only in there a few seconds.

I felt so embarassed at my outburst, but at the time it felt like life and death.

Joy
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Tirzah
Veteran Member
Joined : Jul 2008
Posts : 2323
Posted 10/24/2009 9:50 AM (GMT -8)
Joy,
I don't usually take any comfort in knowing that other people have similar probs as me. But I am so glad that you shared your story. I have been feeling totally out of control. It is so horrible. When I first started having problems a few years ago, I had a thyroid test run & it came back 28, but the doc said that I could only be treated if my TSH was 30 or higher. So I was given anti-depressants, anti-anxiety, anti-psychotic meds (maybe a few others, I don't really remember much of anything about that time). It made me 1000x worse. I got Serotonin Syndrome since I was being treated for extraordinarily severe, treatment resistant depression, even though I actually was hypo, anemic, pernicious anemic & my estrogen was through the roof. Once I got on the Synthroid, B12, iron & BCP, I started feeling better & was hopeful that things would finally be stable for me. But now that seems not to be the case some of the time. Sometimes it works wonders & I feel so very much better, but other times I just feel out of control. I try to think my way out of it, but that really hasn't been working.

I'm going to keep trying to figure out how to better manage all these feelings so they don't go spilling out into my world, but at least I feel like there is someone else in the world who knows exactly what it feels like to be torn in 2 different directions from moment to moment. I have been tracking the list of symptoms & am trying to figure out if there are any "warning signals" -- like how I used to get an aura before I would get a migraine. Maybe there will be something I can do if I can figure that out b/c really I'm like you & don't realize that I've swung the other direction until I find myself being short or upset or whatever with other people or activities.

Thank you so much for sharing your experiences with me. :)

frances
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thebutterflygarden
New Member
Joined : Feb 2012
Posts : 1
Posted 2/21/2012 6:39 PM (GMT -8)
I am interested in joining a chat in regards to hypothyroidism.  Nothing more nothing less.   Please advise.   Thank you.
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