[Raspberry]

in reply to: Normal? Subclinical? Confused #1182109

I’ll be interested to hear what others say on this one. Sorry to hear you are betwixt and between treatment options. I’m in a similar place – my FT4 and FT3 are midrange but my TSH has been around .7 and .8 the last couple months and I’ve had psych symptoms too. Truly unsure of what to do about it myself. If I take more methimazole I risk going hypo, yet I have some hyper symptoms. So I very much relate to your predicament.

As I remember my initial slide down into Graves the TSH went down first while the Ft’s were relatively normal – I had thyroid labs 3 months before the onset. I don’t know if methimazole does much good at that stage even if you can get it?

[Raspberry]

in reply to: Just need some reassurance about these eyes.. #1182071

I’d say if you are uneasy call the doctor’s office up and let them make the call if it something to come in early for. You are dealing with serious things and are an established patient, so it’s totally reasonable to call. I hope things get better soon either way.

[Raspberry]

in reply to: Graves’ rearing it’s ugly head again #1182060

Put that image away! I’ve been very encouraged following the TT reports here on the board. I don’t think one necessarily is doomed to be heavy, tired and miserable and hairless on replacement hormones unless the doc is screwing it up. I think that whether we are on ATD’s or replacement patients need to be much more, um, assertive in making sure they can get the right care than with other kinds of illnesses. Of course it’s hard to be super-brilliant and politely assertive while the Graves’ is whacking away at one’s sanity.

[Raspberry]

in reply to: Graves’ rearing it’s ugly head again #1182058

The way I understand it is if your TSI is not very low (very low Graves’ antibody activity) then getting off the medication will inevitably lead to relapse. WWWI2 it may not be that you did anything wrong at all but that you got off the medication too early, your body held the balance for a while but then finally tipped back over again. From what I’ve read people especially in Japan have higher remission rates and I sure wish we could have that here. I’m rushed right now, but if you are curious to dig up the studies they are out there on the net.

All that said though, I’m tired too. I’ve been on methimazole two years and I read about people getting TT’s on this board and think maybe they are the wise ones. I want remission too, but I’m tired of the up and down and fearing stressful life events could plunge me back down into illness. On the other hand I also have some TED symptoms – that risk never goes away thyroid or not. So I guess we decide what risks we want to take and lay our money down. I’m sorry it’s hard for you right now, know that it will get better one way or another.

[Raspberry]

in reply to: Methimazole/?Allergy/Treatment Decisions – Confusion! #1182043

Hi obnursemh, I read above that your dose got reduced that is great. The terrible itching and hives is incredibly common in the 2-4 week range when first on methimazole. Unless your lips start swelling up in which case you had to the ER, you aren’t in a crisis state just an uncomfortable one! My endo said that the itching is a result of the thyroid hormones sudden shift downward. That said I was seeing a different endo when I got the itchy/hives and was switched to PTU which was fine for me for a year. You just need to get a liver baseline before you start and get liver tests each time for monitoring. The liver risk is actually not high unless you are being given a high dose of PTU. I actually went back on methimazole at a maintenance dose and no itching or hives ever came back.

[Raspberry]

in reply to: Can bloodshot eyes be about TED? #1181981

Thanks Gatorgirly it is good to know there are things they can do other than just let it run its course and that helps me to know what to ask for if it came to it. I’m glad it worked for you too.

[Raspberry]

in reply to: Well, here goes! #1173676

Congratulations AZGravesDude! I’m so glad it went well and I wish you a complete and speedy recovery.

[Raspberry]

in reply to: Can bloodshot eyes be about TED? #1181979

Gatorgirly, thanks for the info it’s good to know the oral steroids helped. What dose were you on? Was it high enough to where it made you gain weight and have steroid related issues? I’m guessing the benefit was clearly worth it though! I hope my eyes calm down but they are making me nervous.

Shakira, that’s a bummer about the optometrist but not surprising. I’ve encountered many that seem to think it’s only TED if you have really obvious protrusion. I’ve had some docs say I have it and some say I don’t – I know it is frustrating.

[Raspberry]

in reply to: Can bloodshot eyes be about TED? #1181976

Gatorgirly, thanks for your reply I know your knowledge was earned the hard way. I was wondering can one assume that all neuro-ophthalmolgists know about TED – is it part of their training? At this stage of things is there anything they could do if it is TED ramping up that would short-circuit it? Like a blast of steroids or something?

[Raspberry]

in reply to: Can bloodshot eyes be about TED? #1181974

Thanks Kimberly that’s helpful and puts things in perspective. I need to thank my lucky stars every day it’s not worse than it is. Based on that page what I’ve got is Grade 1 chemosis…let us hope it goes to Grade 0 sometimes soon!

[Raspberry]

in reply to: Can bloodshot eyes be about TED? #1181972

Thanks for your support Shakira! Good luck with getting the referral you need from the optometrist. I’ve never seen a neuro-ophth. and the three ophth. I’ve seen so far all claim to know what they are doing, but it’s hard for me to trust given past medical let downs. And it just worked out that way that there were three, they are all in the same practice. I just realized I should have just used the word bloodshot to describe my eyes – maybe everyone thinks I’m an alcoholic now, lol. That red line you’ve got is likely just an inflamed section of the conjunctiva (the blood vessels there are invisible normally) but fortunately it sounds like it hasn’t taken over for you. Please keep us posted I’ll be curious to see how you find seeing the oculo-facial guy. I saw mine once and he seemed the most informed on TED of anyone I saw but his focus was mainly cases he could operate on only. So they took lots of unflatterings pics of me and I went on my way – I hope not to need to see him again!

[Raspberry]

in reply to: Hi from Russ, dating a gal, found she has Graves. #1181966

Your lady sounds very lucky to have found you Russ! If I were to start dating I might first hand my guy the packet of articles about impact of Graves that Nancy was sending out a while back. Search for posts by npatterson to find it. The biggest relationship issue is that for some people, not all, Graves can cause long-term emotional intensity which changes pretty dramatically when thyroid levels move. Anger and volatility when thyroid levels are high, depression and apathy when they are too low. I’ve had problems with this. Still some others here seem to have done better with it so there is variability. For me it’s like PMS on steroids and if I were in relationship setting up ground rules for how we deal with fights or anger (his and mine) would be very important – let’s be honest no matter how great things are sometimes there are disagreements. Still you want to avoid blaming any issues solely on the Graves also. Ultimately a good solid base of understanding and love will get you through most anything

[Raspberry]

in reply to: Normal labs, but I’m not. #1177430

Hi Kataso, the blood test to see if your white cells have plummeted (which would possibly be the side effect the sore throat indicates) needs to be done now – in seven days off the tapazole it is possible your cell count will recover and the the blood test will reveal nothing, you’ll be put back on it and go through this again. Do you have any other doctor to consult? Could you go to an walk-in clinic and request a simple CBC test which would reveal if your white blood cell count is okay?

ETA – and yes stopping the tapazole will have results very quickly. My heart rate speeds up very fast after only one day if I miss doses which only happens rarely!

[Raspberry]

in reply to: Blood Tests Normal But Still Have Symptoms – Anyone else? #1181922

I hope your labs reveal useful info Kataso. Early on there was some question about whether I had a toxic/hot nodule which could produce hormone in addition to Graves. My endo said that since the 5mg of methimazole I was on controlled my levels so rapidly that it was unlikely as nodules often require higher dosages and sometimes block and replace strategy which is high methimazole plus levothyroxine to get stability. The normal way to tell if you have a toxic nodule is to have the radioactive uptake test (mine was inconclusive though). If you haven’t had the uptake test yet it’s a good idea and TSI bloodtest too to check for Graves’ antibodies. And did you get a thyroid ultrasound? Anybody with nodules needs to get that done too.

[Raspberry]

in reply to: Well, here goes! #1173666

I’m so glad for you AZGravesGuy, soon you will finally have stability! I was just writing Sue about how I get tempted to get a TT one day. I hope you keep on sharing with us how it all goes for you.

Sara, welcome! Don’t feel like a wimp, those first few months are the hardest and the scariest. There’s so many unknowns about how you’ll react and what your options will be. If anything take heart from all these posts, that life goes on even with all this Graves’ madness.

[Author]

Posts