[catstuart7]

in reply to: Against medical advice?? ugh! #1176186

To get a truly different second opinion you have to go to an entirely separate group of endos. And it could be really worth it to you to check out someone else anyway just to see if you’d be happier with a different doc and practice.

[catstuart7]

in reply to: PTU vs MMI & pregnancy vs. the vast & terrifying world of the internet #1176173

Hi Enid and welcome! Another factor to consider is that you want your Graves’ antibodies to be low as possible before conceiving – tests for this would be TSI and TRab. These do cross the placenta and can sometimes cause neonatal hyperthyroidism.

[catstuart7]

in reply to: Now Endo says take 3 pills? #1176110

vanillasky wrote:

If I call Cleveland Clinic, no matter who is on call, they can fax a req to the hospital for me but they still don’t have a person to draw blood until Wednesday.

That sounds kind of suspicious to me – a hospital has to be functioning 24/7, perhaps they could make a special accommodation to do your blood work if they knew your circumstances? I’m sorry your mom is ill and so much is happening for you all at once – the rain is falling in my life too, when it gets too much make sure you give a little time for yourself.

[catstuart7]

in reply to: Now Endo says take 3 pills? #1176102

Wow tripling your dose?! Did the doc say you were extremely hyperthyroid or that your levels were way above normal? Totally agreeing with Kimberly that you deserve to get an explanation for this change that feels right to you.

[catstuart7]

in reply to: What should I ask the eye doctor about Graves’? #1176116

I have pretty minimal TED so far, so the most useful thing for me has been that at the beginning they took lots of pictures in case my eyes changed later. And they have gotten a little worse since then so I’m glad the doc has the pics. They also measure for proptosis each time to monitor things. Outside of that they don’t really do much unless you are having severe issues affecting your vision – they want to wait it out the “hot phase” until the eyes stop changing.

[catstuart7]

in reply to: So Graves’ Disease is a frame of mind??? #1176075

Hugs to you! I am so sorry you are going through this awful time. Relationships and life circumstances that would be hard even if your health was perfect right now sound like they are pushing you too far. To me it seems like there’s two priorities to get you the right endo help and the right support. If your endo’s office refuses to help you and get your levels checked, that’s reason enough to look for someone else or at least a second opinion. For support even just a regular therapist not necessarily psychiatrist could still help during this time. Let your husband and mother hang out in a box in your mind that you will deal with later when you are more up to it.

[catstuart7]

in reply to: Merry Christmas #1176056

Merry Christmas everybody!!!

[catstuart7]

in reply to: got back from consultation with surgeon #1176018

Oahz, I haven’t been keeping up, but why are you wanting to do OD for only 1.5mm? Doesn’t sound too bad? Still I know it’s a very personal decision for everyone. Sorry to hear the surgeon didn’t have any satisfying answers – I wouldn’t like those either.

[catstuart7]

in reply to: One Month; Feel Horrible #1176010

Hi Smtucker, I know it’s easy to say but don’t let the number of views get to you. People might not post for lots of reasons – sometimes I come and just read but I still feel for people I’m reading about. I bet you lots of those 62 people read your post and nodded and said yeah I been there sister!

About your tests did you have any thyroid tests at all last week FT4? FT3? Those are the most important right now though TSH should always be included. Your TSH cannot entirely be trusted for many months at least because Graves screws it up – not all endos are up to date on that fact either so beware. Best tests are the free T4 (not total) and free T3. And 1/10 is a long time to wait feeling bad – it’s okay to call up your endo’s office and raise a little hell, there should be other docs covering for yours…if you can find the energy to do so

[catstuart7]

in reply to: One Month; Feel Horrible #1176008

I’m sorry you’re having a hard time smtucker. I don’t feel too good either and I’ve been on medication for eight months now. It varies though sometimes leaning toward hyper sometimes leaning toward hypo and sometimes other life factors creeping in to confuse things. For you though on 10mg of MMI a day for one month odds are you have experienced a big drop in thyroid levels and it’s time for lab work to see where things are at, maybe you need a reduction in the MMI. Maybe time to call your endo?

[catstuart7]

in reply to: Starting PTU today or tomorrow #1175843

I’m so glad for your friend! Always good to know something good happened for somebody. I’m so glad you aren’t feeling drowsy from the PTU – I’m especially interested to see what happens because I was on it and switched back to MMI recently and not feeling too great. But yeah PTU does taste horrible, I made a game of finding ways to swallow it as quickly as possible putting it far back on my tongue – it’s like the second the water hits it the water gets flavored with it and the taste soaks in. Still small price to pay if it works otherwise. As for GI symptoms, I had some slight nausea the first couple of days and then nothing after that.

[catstuart7]

in reply to: Eyes not bulging but eye problems nonetheless #1175905

Adding my vote in here – I’ve got eye symptoms, redness, sometimes grittiness, sometimes spontaneous muscle pains behind them but only a tiny bit of proptosis on one eye which the doc says could even be normal (I’m not buying it). The redness and uncomfortableness started a full year before the full Graves’ onset and all my eye doctors missed it. Tried to give me Restasis, told me I had allergies. Oddly enough nothing really helped. I used preservative free tears during the day and an oily gel at night.

[catstuart7]

in reply to: Graves and coping with life #1175797

Hi Vanillasky, do you have any endos local to you that you haven’t gone to yet or is Cleveland your only/best option? I sure hope you can find a good insurance option. And 10mg of tapazole is plenty…well depending on your needs. I’m on 5mg myself and finding it a bit much it’s powerful stuff.

[catstuart7]

in reply to: Starting PTU today or tomorrow #1175835

Hi Amy, to give yourself your best chance at experiencing PTU positively please consider splitting it into 3 doses – this is recommended in the detailed patient information. My guess is you are taking one 50mg pill twice a day right? With a pill splitter you can chop them up and take 37.5 (3/4 of a pill) 1st dose, 25mg (1/2 a pill or two 1/4’s) second dose , 37.5 mg (3/4 of pill) third dose. I set my cell phone alarm to remind me of the middle dose which is the easiest to forget. I know you said you didn’t want to take PTU 3x’s a day so I won’t be offended if you ignore all this but I want you to have your very best chance for success. I hope your friend will get some good news with the CT scan. Good luck no matter what!

[catstuart7]

in reply to: Synthroid Recall #1175816

The recall is only for Abbot labs products so you can check that too.

Big hugs to all of you guys!

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