[SueAndHerZoo]

in reply to: Success story #1177999

You are absolutely right about that. I, for one, was first diagnosed 6 years ago and read everything I could find and joined all sorts of forums to gather support and information. Once I became stabilized with Methimazole my life went back to my “before diagnosis state” and I no longer visited the forums much, if at all. I feel guilty for saying that because perhaps I should have continued to read and post and share that I was now “fine” but I really didn’t have much to say once I wasn’t being bothered by Graves any more. And honesty, I don’t think the people who are still suffering with it really WANT to hear from someone who is feeling great and can’t relate to their symptoms and challenges.

When did I join this forum? A few weeks ago when I came out of remission and started suffering with hyperthyroidism symptoms. I’m back on Methimazole and haven’t found the right dosage yet (will do bloodwork and see endo in about a week) but I hope to be able to put this behind me and forget I have Graves Disease within the next month or two. And yes, I will probably disappear from the forum at that time, unless I can find something useful to share with others.

So, good point. There are many, many people with Graves Disease that are living perfectly normal lives but they are not here talking about it. Only those that are struggling right now are here seeking to receive and share information and support. (of course, that doesn’t apply to the moderators – they have to stay very involved regardless of how they feel and I can’t thank them enough for that.)

So for those suffering right now (me included) please know that there IS a light at the end of the tunnel and this disease does NOT have to be a dark cloud over your head for the rest of your life. It only feels that way while we’re struggling to find the solution and some relief, but it IS out there. Patience and an optimistic attitude help a LOT.
Sue

[SueAndHerZoo]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177558

This is a common problem on forums everywhere….how to share with others what might be very helpful to some without advocating something that could be unhelpful or downright dangerous to others. Forums are a place where we can converse with others who share our situations but they can also cause lots of legal problems for those who have to take responsibility for everything that gets said and done within the forum.

Would it absolve the GDATF of any legal responsibility if links and suggested websites were only shared in private messages? For example a poster could state that if anyone is interested in the site or sites referred to, send me a PM and I will reply with the address, website, link, etc.

Would that free the foundation from any legal liability or does that still cause potential problems?

Sue

[SueAndHerZoo]

in reply to: Just for Fun – The “Off Topic” Thread! #1177834

Great idea starting this thread, Kimberly – thanks!

Oh wow, I would LOVE to rescue that turtle from you but there’s no way Isabella would survive the New England winters. I have several box turtles that live outdoors and they bury themselves for the winter (with a lot of help from me) and I expect to see them popping their heads up out of the ground any week now. But I don’t think African Tortoises are capable of hibernating in temperatures that get this cold.

Does she have a personality? I’ve known two Sulcata’s (huge tortoises) that, when you rub their shells, they do a little dance.

Sue

[SueAndHerZoo]

in reply to: Just for Fun – The “Off Topic” Thread! #1177830

Turtle lover???? (ears perk up) Did someone say turtle lover? Is there another one here besides me? Look, turtle lovers are a rare breed so we need to stick together so come out of hiding and reveal yourself!

I have SO many turtles, both box turtles and water turtles, and I have them outdoors and indoors (although the indoor ones are temporary). Along with dog rescue I do turtle rescue. Yes, you read that right: turtle rescue. Last year was an especially big year… I took in 14 large water turtles from 14 different sources.

Crazy? Yes, but who cares. They keep me busy, challenged and happy and unless you’ve loved a turtle, don’t knock it.
Sue

[SueAndHerZoo]

in reply to: I Stopped Tapazole #1177767

We’re not doctors so it’s hard to say but when I was taken off Tapazole a few years ago it was a S L O W wean off of it, right down to breaking a tiny 5 mg. pill into 4 pieces. I was down to eating crumbs and dust at the end. LOL

You say your levels had been in the normal range for a few consecutive months but were you feeling ideal? Being in range and feeling good are not always one in the same so maybe it wasn’t the right time to stop?

In any event, if you’re already relapsing it’s very unfortunate….. you’ve only had 6 weeks of remission. If I were you I’d have some blood drawn to see where your levels are and then ask your doc where you should be with the meds. Maybe if you nip it in the bud you can stop this in its tracks before the symptoms start bringing you down.

Good luck!
Sue

[SueAndHerZoo]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177544

We’re all just people helping people but sometimes that goes terribly awry either through a miscommunication, a mis-interpretation, or an intentional negative attack. We’re human beings and we all suffer from medical issues that often affect our moods…… it’s bound to happen.

We need a group hug, a dose of amnesia, and a commitment to helping each other feel better, not worse.

Thanks for all you do, Kimberly.
Sue

[SueAndHerZoo]

in reply to: New user #1177757

Hi there, and welcome.
We have a lot of similarities: I was diagnosed 6 years ago also and, like you, thought it was no big deal. You pop a pill, have blood drawn once in a while, and pretty much forget about it. I was fortunate to go into remssion after a few years and that lasted almost two years but it ended sometime around January or February. I’m back on Methimazole (as of 3 weeks ago) and have a prescription for Propranalol and tranquilizers which get me through the really bad days. I’m seriously considering TT because this time the anxiety is really bad and it’s robbing me of a normal life. I won’t make a final decision, though, while I’m feeling like this. I want to become stable and then make a decision with a clearer head.

Geez, it must be something in the air …. why are we having such a bad time with anxiety right now even though it doesn’t seem like our levels are nearly as bad as some people …. if we’re both on 5 mg. a day our levels can’t be that bad (although the doc called yesterday and said I can go up to 7.5 if I don’t feel better in a few days.)

I have no answers but wanted you to know I can relate to what you’re going through and that you’re not alone in this battle.
Sue

[SueAndHerZoo]

in reply to: How can one day be so different from the day before… #1177737

Yes, I’m betting you WOULD be lousy at fostering. As a matter of fact I have a t-shirt that says “Failed Foster Mom” on it because once I get the animals healthy and able to release, I can’t give them up.

And regarding the hubby? He has known since we were dating: “Don’t make me choose or you’re gonna lose!”

Glad you’re feeling a little better. Tomorrow is another day and I’m sure it will be full of surprises for all of us.
Sue

[SueAndHerZoo]

in reply to: How can one day be so different from the day before… #1177735

I think you and Gabe should walk to the local shelter and get a buddy for Gabe.

I am heavily into dog fostering and adopting and at the current time have four…. they keep me busy enough to not dwell on the physical ailments too much and when I am defeated and wanting to give up, they don’t let me. I’m thinking since the sun is shining I will leave the office soon and take a couple of them for a walk. (I’ve tried walking all four at once…. it’s a suicide mission!)

Take some deep breaths, find things to be grateful for (especially Gabe) and try to enjoy some time in nature. Dogs and nature ….. probably the world’s best medicine.
Sue

[SueAndHerZoo]

in reply to: Question about your uptake scan #1177739

The only instruction I received was that if I take a multi-vitamin, stop taking it for a few days before the scan. Other than that, no restrictions.
Sue

[SueAndHerZoo]

in reply to: How can one day be so different from the day before… #1177731

I know exactly what you mean and I think this may be the part of this disease that I hate the most….. the uncertainty and unpredictability. Even when I’m not having an anxious moment I’m still worrying about when the next one will hit and I’m back to a point in my life where I really dread making any plans or commitments with people in the near or distant future. I may feel fine at the moment I accept the invitation but I immediately start worrying that I may be having a “bad day” when the commitment rolls around, etc. And of course the worrying and anticipation provokes a “bad day”. I can see how people become agoraphobic…. I would love it if I could stay home and never leave my house.

The sudden “out of the blue” episode happened to me last week and I ended up in the emergency room. One minute I was at work feeling pretty good and two hours later I was in the ER because my blood pressure kept climbing, and I have NEVER had high BP. They weren’t as panicked about it as I was but the BP stayed high for several days. Now, a week later, it’s back to normal. (shrug).

Another example: I will be active and productive all day and then be appropriately tired on the couch in the evening, half dozing and napping, and out of the blue I will start getting antsy and fidgeting around and tapping my feet and start pacing the room. I wonder why and what causes these sudden “adrenaline surges” to happen?

I don’t know if it will help you but it has been working for me lately: hop on a treadmill and walk briskly (or run) for a minute or two, or run in place, or jump up and down or put on some music and dance like a fool. We need to burn off these surges as quickly as they sneak up on us, or at least I do.

I hope this passes quickly and that we can all find a way to be prepared for and deal with these attacks that take us by surprise. Vent away….I’m sure most of us can totally relate.
Sue

[SueAndHerZoo]

in reply to: For those living with extreme fatigue and cognitive impairment despite bloods being ‘within range’ #1177539

Mslux.
With all due respect, can you perhaps explain why it is you want to escalate this? Even though I found nothing wrong with the posts by Kimberly, you apparently did and she has since removed them. It was a rather odd request to ask a moderator to remove one of her OWN comments (I’ve seen forum members regret something they said and ask that it be removed) but she was gracious enough to abide by your wishes.

If we are all here to offer support, share experiences, and hopefully gain some insight and education, why would you want to keep this subject matter going rather than putting it in the past and moving forward by continuing to offer information and support?

Many, many people count on this forum and it would be a shame to jeapordize it over something that had absolutely no malicious or negative intent. As was stated:

“If there are ever concerns that our online forum was not being operated properly, this could affect the Foundation’s ability to get insurance – which in turn would impact our ability to provide patient conferences, host local support groups, and advocate for patients at national physicians’ conferences.”

I am an active member of many, many forums and this one may possibly be one of the best moderated ones I have joined.

I’m sorry you are not feeling well and sometimes feel defeated but please don’t take out your frustrations in a place or in a way that could hurt others. We are ALL patients and we are ALL suffering.

If you’re still reading, thank you for your time.
Sue

[SueAndHerZoo]

in reply to: TT = anxiety reduction? #1177642

Wow, so much to think about…so much to learn! And regardless of how much we educate ourselves and try to make the best decision there are no guarantees that it will be the right one. That is probably the scariest part: taking a major plunge and finding that it may not alleviate most of the problems and maybe even make things worse!

I’ve had anxiety issues all my life but got them under control with medication 20 years ago and have had no more issues with it (thank God!) But when the thyroid goes hyper the anxiety is the first thing and the worst thing I have to deal with. The last time I went into remission my anxiety issues were gone, so I’m pretty certain that what I’m going through now is directly related to me coming out of remission.

I kind of thought that removing the thyroid would absolutely eliminate the anxiety issues but now I’m hearing it’s not a definite. That is making me take a big step backwards. But I’m not sure WHY it wouldn’t….. once I have the thyroid removed and am taking replacements, can’t we tweak them to a place that we feel functional?

Like I said…. lots of reading and learning to do but I really don’t want to spend the rest of my life never knowing when this is going to rear it’s ugly head again, and I recently read that second remissions are more rare than first ones, so my odds are decreasing.

Thanks for letting me know that yours was a success…… I’m definitely a gambler and may just opt for TT, but not until I’ve thought about it for several more weeks. I am anxious to hear what my endo says – he knows that I have always been dead-set against any permanent solution, so he’s going to be shocked when I bring it up. Hah – I guess THAT will convince him that I’m not feeling normal!
Sue

[SueAndHerZoo]

in reply to: TT = anxiety reduction? #1177634

Hi Karen.
I’ve never been depressed, per se….. the SSRI is for panic attacks and OCD. I was just about agoraphobic at one point and the OCD rituals were taking up much of my days.

I tried counseling for years to beat the panic attacks and OCD but to no avail. The therapy helped me with many, many other aspects of my life and helped me make lots of major decisions throughout the years. I’ve also been to a marriage counselor (with my husband, of course) who I credit with helping us be happier than we ever have been before.

No, there was no scientific test to determine that my OCD and panic attacks were a chemical imbalance…. it’s just that years of therapy and cognitive behavioral therapy did nothing for me but the meds did. They were a miracle. I guess you could call it process of elimination.

I really don’t know if there IS any type of blood test for chemical imbalances in the brain and really have no desire to have one. I spent the last 20 years being panic free, until a few weeks ago. Hope that answers some of your questions.
Sue

[SueAndHerZoo]

in reply to: TT = anxiety reduction? #1177630

Hi Karen, thanks for your thoughts.
We are on different pages regarding counseling and SSRI’s . . . both have helped me tremendously throughout my life. I have been on an SSRI for over 20 years now and it has saved and changed my life. Several times during those years I have tried to slowly wean off of the meds, VERY slowly, and still when I got to a certain level the panic attacks returned with a vengeance. My doctor explains that it is a chemical imbalance and that therapy cannot talk it away (been there, done that) and that I should think of it as any other disorder that requires medication, such as diabetes. It can’t be willed away. The fact that I had tics and OCD as early as 6 tends to make me agree with him.

My panic attacks have been very well under control for the past 20 years (and that’s when I started to have a life) but when the thyroid races, they come back and cause more panic because I never want to live that way again. Yes, the ones I’m suffering are probably 50% the thyroid and 50% self-induced. But if I could remove the thyroid factor I could possibly go back to not even thinking about anxiety.

So that’s where my thought process is today. I will talk about it with my endo (April 15th) and see if it’s a reasonable expectation or only a light possibility. Like I said in an earlier thread . . . for someone who’s suffered with anxiety and OCD all her life, this is NOT the disease to have.

Thanks again for sharing your thoughts…. I take everything into account and it helps me come to more reasonable (hopefully) conclusions.

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