[Gabe]

in reply to: 8 weeks post TT #1181011

Sue… sorry if I’ve caused confusion…yet another example of my foggy brain. I think you are right. I just remember hearing somewhere that even once a person is stable on meds (from a blood levels, clinical standpoint) that some docs are willing to introduce a mixture of T3 and T4 because some people feel better and the lingering ‘subjective’ symptoms are alleviated.

Or, I could be totally wrong. Anyone know what I’m trying to say and not saying it the correct way?

Haha,,, just had a similar confusing conversation with a member of my team…could see her looking at me as if I’ve lost my mind. Damn brain.

Cheers, Karen

[Gabe]

in reply to: 8 weeks post TT #1181009

Good for you Sue!! I’m at 125 and highly suspect I’m hyper….can’t sleep, hot flashes, etc. etc. etc…. I go back in 2 weeks so I’ll know for sure. Things just don’t seem right and I’m convinced I’m hyper. Hopefully 112 is the ideal for both of us. If not, I plan to ask for a thorough study of my T3 conversion…maybe need a supplement like Armour or Cytomel. Hope not, but all options are on the table. 3 months post TT and not feeling exactly as I hoped…not bad but not good either.

Take care…

Karen

[Gabe]

in reply to: Would You Like to Become a Graves’ Forum WARRIOR? #1181023

My vote is for Shirley! while so many on this forum (including the moderators) have been life-savers….Shirley stands out. She’s always around and hasn’t drifted away (as I sometimes find myself doing because of work commitments,,,not because I don’t need and value this forum). She’s compassionate, thoughtful, tough, tells it like it is, and just an all-around gem. There’s a picture of Shirley in the dictionary when I look up “WARRIOR”.

Hope all is well with everyone…

Karen

[Gabe]

in reply to: Hello again, and another post-TT update #1180531

Hi Amy. At least your labs are matching how you feel. Hopefully the smaller dose changes will help you find your ideal dose. I really hope things turnaround for you soon. I also wonder if my general bad feelings at times are more related to the menopause then the thyroid or maybe the combination of both is to blame. It just sucks either way.

Keep getting outside and enjoying what’s left of the good weather.

Hugs,

Karen

[Gabe]

in reply to: Is this common for TED? #1180865

Hi Amanda. You still have Graves’ even without your thyroid. That’s the misconception with this disease. A TT is a form of “treatment” not cure. There are tests to checks for the Graves’ antibodies (TSI and TRab). These blood tests will tell you the status of your disease antibodies. As long as the antibodies are swirling thru your system they can attack your eyes or shins (myxedema).

My TED started with intermittent blurriest, watering eyes, double vision, and then progressed from there. You’re lucky to have a team focused on your eyes. Hopefully you’re also seeing a ophthalmologist. If they tell you that you need prisms, get the stick on (Fresnal). The disease is sometimes progressive so you might need adjustment. Getting prisms ground into your glasses is expensive and if it changes your stuck with glasses you can’t use.

I hope this turns out well for you. I know how frustrating and scary it is…

Best wishes,

Karen

[Gabe]

in reply to: Post Thyroidectomy #1180809

Hope it’s going well. Keep us posted. Ask us questions. Tell us how you’re feeling. We’re here to support you!

Karen

[Gabe]

in reply to: Update and Thyroidectomy Question #1180855

Hi Elaine. Welcome. Wow you have a very complex history and current situation. Hopefully you have a Primary Care Physician who can help you sort all this out. I’ve heard about the myxedema but haven’t seen anyone recently posting about it. So sorry you are dealing with that Graves’ symptom.

To the best of my knowledge (and I’m not a medical al professional) there is no alternative treatment for Graves’. The only treatments are meds, TT, or RAI. Anything else could further jeopardize your health or life.

Your question about TT requiring stable levels is very dependent on the individual and all their health status factors. Most docs want it within a normal range. If you are still very hyper based on TSH, I suspect your endo will continue to raise your Meth to stabilize you.

So sorry you have so much to deal with. It’s OK to vent and have a bad day on this forum. That’s what we’re here for…no judgment, just support

Best wishes,

Karen

[Gabe]

in reply to: Update TT on 8/13/13 #1180859

Hi JCC. Welcome. Glad to hear you’re coming along so well after TT. I agree that the more rest you get, the better the long term outcome. Many of us felt well at first and then had dips or inconsistencies in energy level and mood as the stored hormone disappears and you’re relying totally on the synthetic. It’s a process that can take months to find that ideal dose.

I wish you the best!

Karen

[Gabe]

in reply to: Hi Friends….been a while….an update… #1180852

Thanks All!!

Diane, I will definitely try books on tape to give my eyes a break. Great idea.

Shirley. Isn’t this just miserable. I had to laugh…I too have Fitovers and wear a visor for the glare…a very attractive combination. I used to care so much about how I look and will still try to look my best, but it’s all about my eyes at the moment. Stopped wearing eye makeup also. Called my ophthalmologist today and insisted on another appt so now going back on 9/9 because I think I’ve advanced to needing prisms in both eyes also. I’m so sorry that this is surfacing for you again after completing the surgeries. That’s so scary…the fact that it could haunt us forever. Stupid damn GD.

Sue, thanks for your constant encouragement…you’re a gem!

Hope springs eternal!

Karen

[Gabe]

in reply to: checking in and being thankful #1180763

Hi Ruby…It’s so good to hear from folks who have been here and done this…we question ourselves when we are at our most vulnerable so having someone come back and offer encouragement and support is important and groovy!

Thanks!

Karen

[Gabe]

in reply to: Skipped dose – would I notice? #1180815

Hi Sue…I think your symptoms are coincidental….I believe the Levo builds up in your system and missing one dose shouldn’t make such a dramatic difference….but who really knows.

I’m so paranoid about missing a dose…I do the same thing…set my alarm every day. Drink a full 8 ounces of water with the pill and will not eat for a minimum of 1 hour after taking it. It’s my new obsession! Yay for us..

Hope you are doing well….

Karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179652

Sue, thanks for your post. You have articulated everything I should be doing. You’ve lit the fire for me to get moving on finding an Endo that has more time and availability and will cater to me and my needs. I always worry too much about being a burden on others. Crap on that. Tomorrow I start hunting for my dream Endo!

Yay, karen

[Gabe]

in reply to: Hello again, and another post-TT update #1180519

Hi Amy. Good news. Wow you do swing hard and fast. Amazing. Sounds like the low dose is working for you. That’s great. Just goes to show you how very different we all are and how we don’t react the same. I can ‘feel’ your sense of relief and a little more spring in your step today! That’s great news….hooray for you.

Cheers, karen

[Gabe]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179650

Thanks Sue and Kim. My doc is raising my Levo based solely on the fact that I’m still technically hyPo with a TSH of 7.1. I haven’t talked with him since June 26th so he’s not aware of the emotional stuff. I’m not scheduled to see him until October so I may have to place a call. He’s not the easiest to track down and I’m now sure I ‘like’ him. Silly but I’ve been procrastinating finding another Endo in an location where they are scarce.

I really think the emotional stuff is a combo of everything… Graves’, hyPo, TED, surgery, stress at work, stressful relationships, sprained ankle, shingles….all together has me just a bit down. If the increase in Levo doesn’t fix some of this, I will talk to my doc(s) about options. Hopefully the meditation also helps.

Thanks! Karen

[Gabe]

in reply to: Joint and muscle pain/weakness on ATD #1180627

Hi Flora. Good to hear from you. I remember having those symptoms (not as bad as you) and if I remember correct, they are also side effects from the ATD meds. That was one of the reasons I was desperate to get off the meds. I felt so weak. Unfortunately I didn’t have the patience to soldier thru it. Hopefully once you find your ideal dose these symptoms will subside and you can begin strengthening your dancing muscles! I know there are many folks on this forum that treat long term with ATDs so hopefully they can give your some answers.

Best wishes, karen

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