[SueAndHerZoo]

in reply to: Seeing Endo tomorrow, 9/27/2013 #1181263

Hi Angela…… you’re not alone.

The mental aspect of this disease is the one that troubles me the most and can take me down very fast. I can deal with physical symptoms but when the anxiety and panic attacks occur, I just want to give up and crawl into a hole and never come out.

I am 10 weeks post TT and had my Levothyroxine dosage lowered 2 weeks ago (from 125 to 112) and Wednesday night I had a panic episode while driving on the highway (that usually brings one on). I figured it was over and done, but last night I woke up in the middle of the night in panic and it was still there (but to a lesser degree) this morning. Not knowing when it’s going to hit or how long it’s going to last really depresses me.

I’m wondering if I’m coming down with something (I often get panic symptoms before a cold or flu) or if this is the post TT, medication-change rollercoaster.

Soooooo very discouraging, especially if you’ve had a couple of really good days – it feels like a giant step backwards.

Sue

[SueAndHerZoo]

in reply to: Joined today, TT scheduled in a month #1181232

I’m guessing that the shaking you refer to is similar to the tremors I had in my hands. When I was hyperthyroid my hands would shake and tremor and it was very noticeable to other people. Once I got my medication in the right place (and now since I’ve had my thyroid removed) the tremors are gone.

Welcome to the forum.
Sue

[SueAndHerZoo]

in reply to: Joined today, TT scheduled in a month #1181226

Hello DIY.

I battled Graves Disease with Methimazole for about 7 years before I had a TT, just 10 weeks ago. So far I have not regretted the decision for a moment and have found myself wishing several times that I had done it sooner.

Good luck, and keep us posted.
Sue

[SueAndHerZoo]

in reply to: Flu Shots? #1181179

Hi Diane. I’m with you – I’ve done a lot of reading and decided against getting a flu shot. I have too many health issues going on to risk introducing something foreign into my body that may or may not exacerbate existing conditions or precipitate new ones. I’ve had the flu a few times in my life…. fortunately for me it has never caused anything major and I think my body is strong enough to fight off a common flu if I catch one.

Thanks for your input and opinion….. much appreciated.
Sue

[SueAndHerZoo]

in reply to: Deb’s TT 19th August #1181214

Thanks for the update – look forward to hearing more!
Sue

[SueAndHerZoo]

in reply to: Flu Shots? #1181174

I have a call into my endo but I’m not sure I’m going to totally trust his opinion on this issue as I’ve not been impressed with some of his theories so I need to keep doing my OWN research. I know there will be articles and finding to both sides, but here’s an excerpt I just read:

The issue of this connection between vaccination and other autoimmune illnesses is a controversial one, however. Some practitioners caution their autoimmune disease patients to avoid immunizations whenever possible, because they believe that the safety of immunizations for people with autoimmune diseases — including autoimmune thyroid conditions like Hashimoto’s disease and Graves’ disease — has not been sufficiently examined.

Richard Shames, MD, author of Thyroid Mind Power, Thyroid Power and a number of other popular books about thyroid and autoimmune disease, has said that he is careful about recommending the flu vaccine to his patients with autoimmune thyroid disease:

Generally, the people at higher risk should be concerned about getting the flu shot. But if you have Hashimoto’s disease, having a flu shot is an immunological event. The determination needs to be made more carefully, then, because there is the potential for the flu shot to trigger the Hashimoto’s into flareup or exacerbation.
Kent Holtorf, MD, founder of the Holtorf Medical Center network of health and hormone clinics, generally does not recommend the flu shot:
While the overwhelming majority of people are fine with the shot, I have seen it — and hear about hundreds more a year — precipitate chronic fatigue syndrome (CFS) in asymptomatic people, or severely exacerbate symptoms. The body has two sides to the immune system — TH1 (cellular) and TH2 (antibody). Normally they are balanced, but many conditions are associated with low TH1 and increased TH2, contributing to symptoms such as fatigue, CFS, fibromyalgia, asthma, allergies, ADD, and autoimmune disease such as Hashimoto’s, etc. The flu vaccine intensely stimulates the TH2, and can worsen symptoms — subtly or dramatically — or precipitate these conditions. For those who do get the vaccine, we recommend the Flumist nasal spray, which stimulates TH1 in the nose, so is much safer and as effective, especially for those who have any of the above conditions.
Ultimately, when it comes to seasonal flu shots and other immunizations, thyroid and autoimmune disease patients should talk to their physicians about their own flu risk factors, as well as the benefits and potential risks of the vaccine.

I’m sure it’s probably just coincidence but my two autoimmune issues became apparent within a year after my last flu shot. My jury is still out on this one.
Sue

[SueAndHerZoo]

in reply to: Feeling OK but Looking Horrible #1180845

Raspberry wrote:

Yes Sue, let’s put our Congressmen to work!!! This disease is entirely unreasonable and clearly must have regulations and oversight to keep it from claiming symptoms from other diseases in an out of control manner.

Just writing an update, so I’ve been using the Azulene cream for a few days now and it is helpful with the under eye shadowing. Now this is shadowing I’ve always had any way and isn’t related to Graves’, but I have to say it does a good job. The skin tone in that area is almost now the same as on the rest of my face which is actually pretty new for me. It doesn’t touch the mysterious melasma like issue on the upper eyelids, but I like what it does for the dark circles anyway. It’s made by Earth Science for those interested and is blue!

On my way to go order some – thank you!
Sue

[SueAndHerZoo]

in reply to: Will be gone from forum for a while #1181077

So sorry, Amy. Sometimes life seems horribly unfair and you can’t figure out why it’s all happening the way it does. If you believe in a Higher Power, now may be the time to start talking to him/her even more and trying to put your faith in the fact that everything is happening for a reason and all you can do is Accept and try to stay strong.

You will be greatly missed here and I hope you can check in from time to time but, if not, please know I’ll be thinking of you.

Sue

[SueAndHerZoo]

in reply to: Puffy eyelids since july #1181044

Hi Shakira.
I can’t relate to the puffy lids but I can relate to the bags and dark circles under the eyes. If you search my posts you’ll see I started a thread about that a few weeks ago.

I am right there with you with hating the fact that some medical condition is affecting the way I look. I know other people have noticed it and it makes me look tired and “sickly” regardless of how many things I try and how much concealer and make up I use.

My final hunch is similar to yours… that it’s related to something we’re eating. I tried cutting way back on carbs a week ago and it seems to have helped a lot already… not sure if it’s coincidence or really the cause.

Then Wednesday we changed my dose of Levothyroxine and the eyes look pretty tired and sunken again so I guess our thyroids and it’s fluctuations are a factor, too.

Wish I had some answers or solutions for you but at least know that you’re not alone with this frustration.

Sue

[SueAndHerZoo]

in reply to: Would You Like to Become a Graves’ Forum WARRIOR? #1181027

A big thanks to the GDATF administration for thinking of and implementing this, and a huge thanks to those who have stepped up to become Warriors!

I’m right there with you, Raspberry. I would feel funny be a “Warrior” while I still have so many issues to work out and so many questions to ask of others so for now I will try to contribute and share what I learn as a member and regular poster.

I learn something from EVERYONE on here, and even when I’m not learning something, I’m feeling better just being part of this group and hearing what others experience.

So glad to be a part of this in any way, shape or form.
Sue

[SueAndHerZoo]

in reply to: Carb Intolerance #1180950

I can’t share any decent links, either. The ones that seem scientifically based and credible are too darned hard to understand, and the rest are just people’s opinions and personal experiences.

I agree with everything Harpy said about low-carbing. Don’t do it severely, and don’t do it overnight. When I did Atkins 10 years ago I went by the book (literally) and went from being a carbaholic to under 20 grams a day. There is a syndrome they call the “Induction Flu” that occurs during the first two weeks because your body really does feel as if you’re really sick when you give them up that severely.

This time, I just cut back greatly, but not drastically. And I’m still taking in carbs but instead of two pieces of bread in a sandwich, I’m using half of one slice. Pasta? A taste or two, but not an entire serving.

My eyes did start to look much better after a few days but this morning they are going dark again. That’s either because I had mashed potatoes last night or because we started a new dose of Levothyroxine yesterday. Only time and more experimentation will tell.
Sue

[SueAndHerZoo]

in reply to: 8 weeks post TT #1181014

Kimberly wrote:

Hi Sue – If your doc ordered a T3 test as part of your panel, the lab results will tell the full story. However, keep in mind that the majority of patients do just fine on T4 alone. As Karen noted, the time to think about T3 issues is if your levels are normal/stable after a period of time (the European Thyroid Association recommends 6 months) and you are taking the meds properly – but you still aren’t feeling well.

Hi Kimberly. Unfortunately my endo is one that does not believe in testing for T3 after a TT. He gave me a long, scientific dissertation on why and he quoted tons of medical publications from the last 10 years with the various changes in thinking but he personally does NOT believe in it. When I pushed him on it he said he has hesitantly tested a few of his patients and tried them on T3 supplement and that it has never proven effective.

I’ve already been researching other endos in my area and may go have a consult with one in the near future. If I can get my levels in a good place with the original doc then I may just continue to use him for my yearly or bi-yearly check ups but if I can’t get feeling well after 6 months to a year I will go elsewhere.

Sue

[SueAndHerZoo]

in reply to: 8 weeks post TT #1181012

Gabe wrote:

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

LOL Sorry to be laughing at your expense, Karen, but I found your mush brain to be quite funny – probably because I can relate so well.

I get embarrassed and frustrated at work when I am standing in front of 6-7 people, have their full attention, am in the middle of speaking about something fairly intelligent, and then a bunch of jibberish syllables come out of my mouth. It’s not like a stutter, it’s more like a bunch of alien-language comes out of my mouth all of a sudden. Don’t know if it’s a result of the TT but it never happened before. I’m going to chalk it up to the exhaustion our bodies are still dealing with (along with the recovery). That’s my story and I’m sticking with it.

I’m also going to assume that if I went hyper on Levothyroxine that I am converting T4 to T3, until I hear otherwise. Lord knows I have enough to worry about – I don’t need to get phobic about “not converting” again like I was the first few weeks after surgery.
Sue

[SueAndHerZoo]

in reply to: Would You Like to Become a Graves’ Forum WARRIOR? #1181024

Gabe wrote:

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

Couldn’t have said it better myself – Shirley’s input has been priceless.

However, poor Shirley never even said that she WANTED to do it. Guess we ought to hear how she feels about that before we pressure her into it.

(and of course, the decision is not ours but the Moderator’s)
Sue

[SueAndHerZoo]

in reply to: 8 weeks post TT #1181010

Gabe wrote:

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

Hi Karen. Pretty soon I think we will know our bodies and each fluctuating level and it’s accompanying symptoms so well that we will pretty much be able to predict what our lab numbers will read.

Question about your comment regarding checking T3 conversion: since I am hyper and you suspect you are, doesn’t that pretty much confirm that we are properly converting our T4 to T3? I thought if we stayed hypo and couldn’t get our TSH down that that might mean we weren’t converting, but since I’m hyper I found comfort in knowing that I was converting properly.

So you’re saying being hyper is NOT confirmation of conversion?
Sue

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