[Ski]

#1066210

Sure glad you found us, Antony. ” title=”Wink” />

We all understand the frustration ~ I find that mostly, we’re the absolute definition of those who do all for everyone, and it’s really difficult not to be able to "fix it" quickly so we can get back to that.

Hang in, you WILL get there!

[mamabear]

#1066211

Hang in there !!! Yep it stinks that we can’t just fix it…
I sure know how to fix up a kid that is sick and needs mama..
I sure know how to fix up dh when he is sick in bed and has a fever..
I sure know how to fix up an animal if the need arises or any form of first aid…
I sure know how to make a huge meal out of not so many things and feed an army…

I was taught patience with this disease… and that helped me fix my mind and the way I look at others. You never know if that person that just bumped into you and yelled at you because they say it was your fault just got out of his dr’s office telling him he had something wrong… I look at everyone in a different light.

You’ll get there! Keep occupied by fixing other stuff and let the meds fix you! Be a good advocate to yourself and make sure if the dr isn’t doing what they should to find a new one!

[Antony]

#1018648

I’m new here and wanted to take a minute to say that I’m glad this exists! I was diagnosed with Grave’s nearly 5 years ago but have had various symptoms for 35 years. I’ve sought help for 25 years, but was told there was nothing wrong (the endochrinologist refused to do bloodwork) and it was mismanaged until a year ago when I got my 3rd endo. I’m not here to complain about the past…but it’s hard to grapple with managing symptoms when no one tells you that they’re related to Grave’s. That’s why I’m glad you’re here.
Like a lot other people here, I arrived doing my own research. It’s a relief to realize that a) the cheese isn’t actually sliding off my cracker and b) that I’m not alone.
I’ve tried to do my due diligence as far as trying to manage this disease, but sometimes feel that I’m losing ground. In the beginning, it was all I could do to address immediate symptoms…a real juggling act. I had radiation last May and we’re working on finding the right synthroid dose (I found out the hard way not to let another doctor meddle with this, btw). Just when I think that things are settling down, tremors, (body) hair loss, anxiety, appetite loss with weight gain, intolerance to heat, etc., all return…with insomnia as a constant companion.
I don’t know that I really had a point here; just having a bad day with it today. I solve problems for a living and I guess it’s just frustrating when I can’t fix me ” title=”Wink” />

[Antony]

#1066212

Thanks for the input…I really do appreciate it. MB, I agree that this disease has a lesson of patience to teach; I just need to extend that to myself. I can relate to doing for others (yes, I have scads of animals, a granddaughter, being there for patients of complex surgeries because of a group I’m involved with, etc), but have had to back away from Board positions on charities because I just have days when one extra thing on my plate is too much. I’ll take your advice and try to extend that level of patience to myself ” title=”Wink” /> Wow, that sounds easy but it isn’t, lol.

[Kimberly]

#1066213

Hi Antony – Good for you for paring down some of those extra commitments. I think that anything we can do for ourselves to keep stress levels in check is helpful.

Have you had your thyroid levels checked recently to make sure you are still in the "normal" range? Or is there any chance that your pharmacy has changed manufacturers for your replacement hormone? (The active ingredient is the same for all manufacturers, but your body’s absorption of the hormone can vary if you start using a different manufacturer.) Perhaps this is just a temporary blip, but such a major change in how you feel 10 months post-RAI is worth discussing with your endo.

Best of luck!

[Antony]

#1066214

Kimberly wrote:Hi Antony – Good for you for paring down some of those extra commitments. I think that anything we can do for ourselves to keep stress levels in check is helpful.

Have you had your thyroid levels checked recently to make sure you are still in the "normal" range? Or is there any chance that your pharmacy has changed manufacturers for your replacement hormone? (The active ingredient is the same for all manufacturers, but your body’s absorption of the hormone can vary if you start using a different manufacturer.) Perhaps this is just a temporary blip, but such a major change in how you feel 10 months post-RAI is worth discussing with your endo.

Best of luck!

Kimberly,
Thanks for your reply. Yes, I spoke to my endo over the phone and went for labs (free T4 and TSH only) March 4th. I don’t know the results yet, but T4 had still been on the high side and TSH has remained .005. My request for the labs came because of some sudden body hair loss within the week prior, I think my thyroid is swelling, tremors are getting worse and my muscle strength is waning…and I’m definitely edgier & hyper.
We’re down to .05mg of name-brand synthroid just because another doctor had me cut my previous .1mg tabs in half when I was in the hospital with an infection (my cat bit me). Within 2 weeks, my wife found me walking outside in my sleep…I’d been wandering around for 3 hours (and I had not taken my usual 10mg. Ambien for a week). Now, as I said, I’m strictly on my current name-brand dose of synthroid.
If the levels look good, I’ll keep my scheduled appt. with the endo in 6 weeks; if something looks off, he’ll adjust the dose. I’m also set to have an ultrasound in 6 weeks, but am wondering if this shouldn’t be looked at now as well. I just keep thinking that something is wrong.
Also, I stopped taking klonapin (2mg) 6 weeks ago and am not sleeping well at all; ambien alone never did work well. I can’t wait until this settles and I can give up some of the meds (I stopped the Klonapin because my wife read something she didn’t like about it and gave me so much grief that I reluctantly stopped.

[sbigler]

#1066215

It is so helpful to read the symptoms of others on this site. I too am having issues with heat intolerance, night sweats, insomnia, anxiety etc. and was confused because I thought these symptoms were more side effects of hyperthryoidism and not being hypothryoid. I am new to this disease (had the RAI on Dec 16th) and just started synthroid last Wednesday (.075). I am so exhausted that I never even got out of my p.j.’s this weekend. I was hoping that I would feel better quickly, but have learned that it is wrong to think any cures would happen "overnight". Preparing myself for the long haul because of reading everyone’s comments on here has been the most beneficial aspect of joining this group. So thanks for your honesty everyone-it has been very helpful!

[Kimberly]

#1066216

sbigler wrote: I too am having issues with heat intolerance, night sweats, insomnia, anxiety etc. and was confused because I thought these symptoms were more side effects of hyperthryoidism and not being hypothryoid. I am new to this disease (had the RAI on Dec 16th) and just started synthroid last Wednesday (.075). I am so exhausted that I never even got out of my p.j.’s this weekend.

Hello – Have you had labs done recently? The symptoms you describe are often associated with hypER…but occasionally our labs and our symptoms don’t seem to match! I know that sometimes there is a "dumping" process following RAI where the thyroid’s stores of hormone are released into the body…and this can temporarily cause hypER symptoms. However, I believe this usually happens earlier in the process. Hopefully, one of the facilitators who has experienced RAI can jump in here.

[Kimberly]

#1066217

Antony wrote: Yes, I spoke to my endo over the phone and went for labs (free T4 and TSH only) March 4th.

Antony – Hopefully, the lab results will provide you with some answers. Also, I would talk to your doctor about your sleep issues as well as the other meds that you are taking and when you stopped/started them. Certain meds can have an impact on how our body absorbs the thyroid replacement hormone. If your doc is fully aware of the other meds you are taking, then he/she will be in a better position to help you find an optimal dose of replacement hormone.

[Antony]

#1066218

No answers…just hurry up and wait another 4 weeks. The nurse told me that T4 is high but okay, TSH is still in the basement. She suggested that my bloodwork may not have caught up to my symptoms yet…is this possible?

[Ski]

#1066219

TSH can definitely lag ~ it operates in response to a "running average" of your thyroid hormone level over several weeks, so as you move forward in the process, it catches up. Typically our thyroid hormone levels don’t fluctuate so dramatically, so TSH is very reliable when you’ve been stable, but it can take a while to catch up when we’re in active treatment.

[mamabear]

#1066220

Antony, yes PM’s are fine!

I wanted to post this hear in case others need the info or the peptalk.

We have lives that we have to live regardless of our health issues. We do better in our health when we have human contact other than the kids and the every day to day life we lead. It’s hard sometimes to have that contact but we need it, our body and minds thrive on it. We are healthier when we reach out.

I have had 4 kids, there is nothing I am embarrassed about most of the time. I’ve had a kid in a store yell the F word and just looked and said I’ll have to go the soap isle and buy a good brand….just to ease the tension most people feel when hearing something like that from a kid and are wondering what the parent is going to do.

I’ve had a yelling contest just because I was cranky one day and my numbers were all screwed up and I didn’t realize it yet. Yes people will think you are crazy, they will think you are mean or a jerk. You can apologize and say you have thyroid issues you are working on and this is a reaction from it. Your friends should understand and if they don’t remind them this is a disease that will take time to heal.

You need all the support you can get, your wife can come on here and ask as many questions as she wishes. She can come on here to vent as well if she needs to. It’s not easy on the spouse either, they have to deal with our crankiness and outbreaks and it can get lonely for them as well because they have no one else who will understand.

Well we sure would understand because we are the cranky ones and can help her learn how to deal with you and help support you during this time. She must be out of mind thinking how nuts you are and you must be faking it. YES..dont be surprised if she feels that way.

Honesty is the best medicine and being a friend to your husband and or wife during this time is the only way to get through it. Being honest about your feelings and saying it gets it off your chest and then you move on so therefore there is no more resentment. BOTH of you fighting the disease if better than one of you trying to do it.

Have her help you research and get info that you need. If there is a drug that you were on, it is up to YOU and your DR to determine the pros and cons of the medicine. Yes it can be scary to take a drug to help you but that is up to you to decide and if you are healthy enough to take the medicine and are being monitored by your dr. and check before you take other drugs.

All drugs even aspirin have their pros and cons, if you take a tylonal you are taking a drug that can effect your liver so therefore that is a risk just like with everything else we take.

good luck

[Antony]

#1066221

Thanks, Mama Bear:) As far as the meds (klonapin) goes, it was helping me…both with sleep (2mg at night) and being allowed 1mg if I had a storm at home. I’m not sure what my wife read in opposition to the medication, but I’ve never exceeded the dose, if that was her concern. I’m just now beginning to understand the emotion behind how she laid into me about it though…it turns out that my (bipolar) step-daughter told her that I was "obviously on something" and fell off the lawn tractor one day! Talking to your spouse, even over things that should be obvious, is very important, especially when strange family dynamics are involved. I was stunned when my wife finally told me about this incident and she apologized for buying into the drama Carrie invents. Good Lord…this is hard enough to deal with without the added silliness. I guess it also says something about needing to be aware of one’s surroundings instead of just "getting by".

Tony

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