[Raspberry]

in reply to: I walked a 5K today! #1180999

Amy thank you so much for that link! Really truly made me laugh and the blerch certainly speaks to all of us. I had a little trouble trying to find where to start reading in case someone else had the same problem the blerch is part 1 .

ETA….aaaargh I have Graves Brain! You did tell us what to click on. It’s too embarrassing to tell you how long I wandered around that site looking for the story of the Blerch. I want my brain back so bad.

[Raspberry]

in reply to: Feeling OK but Looking Horrible #1180839

SueAndHerZoo wrote:

Have any of your doctors ever had any input about these eye issues, or do they just dismiss them as a trivial, cosmetic thing?…..look like well-placed eye shadow… some women would pay to have that!
Sue

Definitely cosmetic, docs claim they can’t even see it. I normally have super-pale white skin, so the tan color is quite odd. It first appeared on the skin right below the eyebrow toward the outside over the bone. To my knowledge there’s no eye muscles or soft tissue there, just skin right over the bone – it’s crazy! It looks almost exactly like I got some slightly darker flesh toned eye shadow and smoothed it evenly over. Some locations of it would look okay, but other areas of it like on the outer eye corners look odd. Still it could look a lot worse and I’ve pretty much accepted it. Still reading about those products you guys are trying maybe I’ll give it a go! It’ll be interesting to see if people react to me differently – I think I’ve got kind of a tired haunted look even on my best day these days so it would be great to improve that. Keep us posted with your experiments!

[Raspberry]

in reply to: Tweaking Meds – Bad Idea, I know #1180971

You already know…it’s better to wait. You can always hound your doctor’s office by phone to get your results and a little guidance earlier than usual. I’ve heard of people having noticeable effects from changes as small as 12mcg – I’d be pretty cautious about skipping a whole day or chopping things in half. Still I know the feeling, I wish I could feel better NOW myself!

[Raspberry]

in reply to: Is it or isn’t it? #1180888

There’s a very good chance the cause of the hallucinations is that huge 80mg dose of propranolol you are on. “Visual disturbances” and hallucinations are listed as side effects. I know someone personally who had hallucinations on it. There are other beta blockers that do not go across the blood-brain barrier as easily as propranolol like atenolol and still will give you what you need. Maybe run it by your doctor and see if you can switch?

[Raspberry]

in reply to: Feeling OK but Looking Horrible #1180834

More eye stuff….so have any of you had the problem of a darkening/brownish tinge appearing on your eyelids and area under the eyebrows? This symptom appeared very early on after my official GD diagnosis in the under-brow area but after over a year now affects the entire eyelid and the outer corners of my eyes. It’s subtle…almost looks like I got some light tan eye shadow and did a weird experiment. Under the eyes I have the same dark circles I’ve always had and puffiness under and upper areas that appeared when I approached hypo and never left.

Sue just a random thought but maybe your eye changes could be a delayed post-surgical reaction? Doesn’t the body give off all kinds of stress hormones during surgery liked cortisol and adrenaline? Odds are it is thyroid but just thought I’d throw that out there.

[Raspberry]

in reply to: Sue’s TT – Part 2 #1180649

I”m glad it helped! And good for you getting those tests early and pressing the doc on the T3. From what I understand, making sure the Free T3 comes out right as well is a big part of calibrating the replacement dose and type for people. I feel like the zone of wellness is just a moving target for me on ATD’s. A dose will be right for a little while but then things change again. I definitely relate to that frustration. At least once you find your sweet spot maybe you can stay there!

[Raspberry]

in reply to: Sue’s TT – Part 2 #1180642

Hi Sue, I hope you are getting some sleep and aren’t an insomniac like me tonight! In my obsessive internet research, I’ve read a number of posts from people after TT or RAI taking literally over a month to fully adjust to a dosage change of their replacement hormone. It may be the you are finally experiencing the full effects of living on the dose you now take and it needs to be adjusted (my guess would be UP). I got early extra blood work today myself and I hope my endo doesn’t think I’m being a ninny, but I feel kind of crazy and hyper lately.

[Raspberry]

in reply to: 3 year old with graves #1177600

Wendy I am so sorry for your little one and you to be going through this! GD is hard enough on an adult who knows what is going on. I don’t know much about the UK health system, but is there any way you can get a second opinion – or have you already gotten one? That much methimazole would totally block the thyroid of an adult. It seems like something odd is happening here to keep the drug from getting into her system.

[Raspberry]

in reply to: The treatment options kind of stink. :) #1180917

Hi Kalty, have you had any antibody tests done? These are considered to be definitive tests for Graves – it is not guesswork if these tests are positive and they say you’ve got it. There are two tests either of which will work
1) TSI (thyroid stimulating immunoglobin) this measure the percentage of excess stimulation that is occurring to your thyroid by the antibodies
2) TRab (thyroid receptor antibodies) this includes a total count of all Graves antibodies which includes stimulating, blocking, and neutral types. For the most part everyone is concerned only about the stimulating antibodies because that’s what drives up the thyroid hormone.

Normal people have none of these antibodies or very very very low values. Good luck getting your answers!

[Raspberry]

in reply to: Feeling OK but Looking Horrible #1180828

I wish you luck with the products Sue – I feel for you my eyes have looked “unhealthy” for so long now. I know I’m lucky they aren’t worse, but they used to be my best feature and now it’s depressing. I feel like people do react to my appearance negatively like checkers in stores – there’s a subtle shift in their attitude once they actually look at me even though they don’t say anything. There’s a product I’ve been thinking about trying but haven’t yet, thought I’d throw it out there Earth Sciences azulene eye cream claims to reduce puffiness and darkness. I’ll report back on it at some point.

[Raspberry]

in reply to: Is Graves as a response instead of a disease? #1180921

SueAndHerZoo wrote:

I’ve recently had a TT so what does that mean for the future stressful periods in my life (since none of us can avoid them completely). Does it mean it will trigger it to attack our eyes instead? Geez, that thought is enough to keep me sedated on tranquilizers for the rest of my life – scary!

Sue

I wonder too. My mother had a TT forty years ago and has had significant stress since then, but she never has had eye problems. Still I know some people have years later too. Seems to be no guarantee on that one. I guess with a TT you can be really sure that you will never ever be hyper again without your permission and that’s got to be worth a lot!

[Raspberry]

in reply to: The treatment options kind of stink. :) #1180906

Kalty and Meemeej, I felt the same way when I first really understood my options too. It’s unfortunate that there aren’t better options, but you truly have to choose one. Simply taking a beta-blocker masks the symptoms but the high thyroid hormone is still doing harm to your body by wasting your muscles including your heart, weakening your bones, and generally a whole bunch of other bad stuff. If you are only very slightly hyper I have heard that some endos will do a watch and wait period in the hopes that things simmer down on their own. If very hyper though…you gotta choose.

[Raspberry]

in reply to: Symptoms Extreme on Right Side #1180879

I experience a different sense of the two sides of my body as well starting a couple of years ago. It worried me enough that I asked my doctor to evaluate me for neurological/stroke indicators but I always came back okay. For the last year I’ve been dealing with some swelling in my lower legs, but it is far worse on the right side – particularly my right foot is almost one full size bigger than the left! Graves is one crazy disease.

Trina, I am totally on board with you on the loss of faith with doctors, but yet there still are some good ones out there. And even if they miss some things, they can still be very good for other issues. Unfortunately with Graves being as serious as it is, we don’t have the choice anymore to go it on our own. I see it now as a rather wary partnership. I wish you luck and I hope you do find the right doc to help you – he/she must exist.

[Raspberry]

in reply to: Is this common for TED? #1180868

Hi Amanda, sorry you’ve got TED troubles going on….I have mild TED that worries me but so far seems steady. I don’t have eye insurance either but ophthalmologists treating you for TED counts as “medical” and not eye in my plan at least though I have no coverage for optometrists, glasses, or glasses prescriptions. I’d encourage you to take a second look at your insurance – if you are covered for any other medical specialists you should be covered for an ophthalmologist too for non-glasses/contacts stuff.

[Raspberry]

in reply to: Another Husband #1180780

Much sympathies and hugs Rick. It is a hard road for the Gravester and those connected to them. I will say that Graves’ has seriously tested my mental health over the last year, but that even at my worst when I was fighting depression and paranoia I was still able to maintain some self-control. I do think your wife has an obligation to try to exercise some self-control as well and does have a responsibility toward you and your children. Counseling has already been suggested and sounds essential even if she won’t go it will help you and your kids.

Also like Nancy said, please consider getting another endo opinion. The most common error doctors make with thyroid patients is keeping their Free T’s too low making them hypo. The result of this is often out of control emotions as much as or more than when they were hyper. For some people, like me, hypo symptoms start when the FT4 is low but still in range. I know some docs won’t admit a patient is hypo unless the TSH is above the top of the range – nevermind the Free T’s – and many labs still keep the old ranges with upper limits of 4.5 and 5.5 which are disastrous for physical and mental well-being. My own endo says the TSH should never go above 2.0 and she’s totally right on that based on how I’ve experienced those values. I wish she’d look at the Free T’s as closely as well, but hey you can’t have everything. So anyway, another endo to review what’s happening with your wife’s medications is a good thing. Good luck to you and take care.

[Author]

Posts