[GLo22 July 12, 2012 at 6:06 pm Post count: 13]

#1059196

Aloha! My labs results came back and luckily with ATD tx I am getting back to being within normal limits with T3 and T4 (but of course not TSH – only started the meds 3 weeks ago). My endo is keeping me on the same dose of MMI until August and then …a maintenance dose. I’m so lucky, I know!

So,
what happens next? A maintenance dose until ” ???”…. how long can people be treated withon ATD therapy?

Sorry for sounding so un-educated but reading these boards about people needing several different therapy’s, etc. is making me realize that this is a very individual journey in many ways (one being treatment). Also, my endo is very smart but very vague about what’s ahead for me.

Thanks!

[Bobbi July 12, 2012 at 7:16 pm Post count: 1324]

#1172873

In the U.S. many of our doctors seem to still want to limit people to two years or so on the ATDs. In foreign countries, it is much more common for people to stay on them for long years. It is important that you try to find out, from your own doctors, what their thinking about it is. Your doctor may be reluctant right now to speculate until he/she determines how well your body is tolerating the meds. But after a few months, you might be able to have a more thorough conversation that will give you insight into your doctor’s opinions and reasons for them.

[Robboford July 16, 2012 at 8:06 pm Post count: 102]

#1172874

Hi GLo,
Thought I would outline my Grave’s journey and hopefully give you a bit more insight. When I was first diagnosed back in early September, 11, I thought my road to recovery would be quite quick although my Endo did warn me that it may be a long journey. (“We need to bring your levels back to normal and then we will remove your thyroid and you will be on 1 pill a day for life, you may get sick of taking tablets till then but that is our plan for you” my Endo’s words to me). I thought not me, I’ll kick this and be back to normal in no time. Looking back now, wow, how naive was I. Graves is such an individual journey and a time limit just cannot be set at the outset. (My medication count is up to 23 pills a day now, plus cortisone/steroid cream for pretibial myxedema and at my latest count, I have consumed in excess of 6,500 pills since being diagnosed). I don’t think your Endo is being “vague”, I think they are trying to be cautious and not set time limits. Well done to you for the changes in your lab results in 3 weeks, and a change in TSH will happen by August (for your next labs), hopefully a speedy recovery is on the cards for you. I should add that I also have irregular heartbeat and eye issues with my Graves condition.
Keep fighting the good fight,
Cheers, hugs and kisses
Debbie

[adenure July 16, 2012 at 8:43 pm Post count: 491]

#1172875

Yes, I’d agree that it’s quite the journey. I’m about 7-8 months into it. I’ve already posted my story, but I’m 4 weeks post- op now. Surgery couldn’t have gone better, thanks be to God for that. But, getting hormone levels even isn’t so easy I guess. I had labs done which show a mild hypothyroidism, but normal to high T4. My endo wants me to wait another 3 weeks and have another set of labs (with T3 thank goodness) and then he’ll decide what to do, but he won’t change anything just yet as far as dose or the drug itself. It’s hard to hear, “Wait 3 more weeks” when you have headaches, require Tylenol fairly frequently, and can’t sleep more than 5 hours a night and feel like you’re dragging. BUT, I do know that I could be back in the hyper nightmare, so yes, things could be worse. It’s just hard to be patient and take it a day at a time. Not knowing what the future holds is tough. I’m still not at peace with that I guess. I’m hoping once my hormones are leveled out, I do pretty well and don’t have any more complications from Graves. I hope you do well too!

Alexis

[maryrenvall July 17, 2012 at 9:55 am Post count: 6]

#1172876

Maryloo here, glad I found you . I was diagnosed with Graves in 2009 and was a cigarette smoker. Was on Tapazole then PTU and Tapazole again thru 2011 . The drugs just couldnt get my numbers down until …? Hello ??, I quit smoking ! Aug. 1, 2011. Big change !!The month after I quit , my numbers stabilized . Then the endo did a block and replace regime (Synthroid and Tapozole combo ) that kept me stable,but sleeping like 14 hours a day . Luckily , I had a total thyroidectomy in March 2012 and I’m feeling great . I have the mild eye condition ,makes my eyes look puffy more than anything . Sept 2009 I was diagnosed by an endo and Dec2009 the red raised rash appeared on my shins .The lumps and bumps weren’t far behind .I’m very interested in hearing about your Pretybial Myxedema . My size 8 1/2 feet are a very swollen size 10 now , the lumps on my legs have settled down a bit since the surgery . Do you find a big improvement using the cortizone cream ? I use it occasionally , my skin appears to be getting thinner with the use of the cream and saran wrap ,but don’t know if it helps with the lumps . Have you tried anything else for your legs .. like laser ? Thanks !

[kms1246 July 17, 2012 at 6:59 pm Post count: 14]

#1172877

What was your method of removal?? If you don’t mind me asking?

[maryrenvall July 17, 2012 at 7:16 pm Post count: 6]

#1172878

A total thyroidectomy was performed .I was very fortunate to have a great surgeon . I didn’t need any pain meds luckily .I went back to work 2 days later.I am on 174 mcg of synthroid .

[Robboford July 17, 2012 at 7:22 pm Post count: 102]

#1172879

Hi Mary,
Thanks for reading my posts. The cream is the only thing that has helped me. My Endo is fine with me using it but a couple of his colleagues are concerned at my long term use. Personally for me, I am not going win any “lovely legs” competitions anyhow so the skin thininng isn’t an issue I worry about. Due to the severity of my rash, if I do not apply the cream daily I can feel the redness and swelling coming on. Within 2 hours of feeling the “tingle”, the lumps (I would describe these more as welts) appear, I start scratching or should I say gouging, and then end up with broken skin and bleeding. If I had to choose between using the cream or putting up with the itch; the cream wins hands down. I haven’t heard about any other successful remedies or treatments I can use. What have you, or others used? It does seem to be a very rare side effect/symptom here in Australia and sometimes I feel like a sideshow act as a lot of my Endo’s colleagues have seen it in books or encountered it during their studies but have never actually seen it in real life. I have tried to wean myself off it (using every second or third day), but my body just won’t co-operate.
Cheers, hugs and kisses
Debbie

[maryrenvall July 17, 2012 at 7:40 pm Post count: 6]

#1172880

You are welcome . I’m just so happy to read about someone else having it !
I know my docs and the specialist were videoing and taking pictures with their Iphones .The only time mine was itchy was when it first started 2009. It looked like a sunburn and then got itchy .I rarely put the cream on because my legs dont hurt or itch .They are so ugly the rash kind of wraps around the ankle area .It’s finally summer here in Vancouver Canada and it’s really hard to toss away the vanity and bare the lumps and bumps. People have asked me if its cellulite .LOL . I wish . Kind of looks like that ! One thing that does make a difference is soaking in good old fashioned Epsom salts . Who woulda thought ! Lets keep in touch . I would like to swap some pictures of the legs with you If you want to . We could do it through the facilitator too . TC

[Robboford July 17, 2012 at 11:55 pm Post count: 102]

#1172881

My rash is limited (so far anyhow) to one shin. It looks like I am wearing a red sock – starts just below my knee right down to the top of my foot. I would be happy to send you photos, but I am not sure if they will turn out. For you to get the whole picture, I would have to not use the cream for a day and wait for it to flare up, take the photos and then lather on the cream. I will give it a try in the next couple of days. Not sure how I would post the photos though – PM maybe?
Cheers
Debbie

[Bobbi July 18, 2012 at 7:09 am Post count: 1324]

#1172882

Hi, Maryrenvall: I was warned by my doctor NOT to wrap when applying the cortisone cream to my legs. I know different doctors suggest different things, but I wanted to make sure that your instructions came from your doctor, and not some anonymous person on the web.

[maryrenvall July 19, 2012 at 9:41 am Post count: 6]

#1172883

Thanks Bobbi .Yes, my Dr.’s said to do the wrap .I always check with the Dr. about anything I have read on the net . How did you make out using the cream ?

[Carito71 July 25, 2012 at 9:08 am Post count: 333]

#1172884

Hello GLo22,

I’m so glad the Rx has started to lower your #s. I’ve been on Methimazole for 5 weeks and 2 days myself and a couple of weeks ago when I had labs, my #s had lowered just a little bit. I have labs again in 2 weeks and I’m hoping that we can see more progress. I do feel the change now. The first 3 weeks were awful for me. I felt like I was getting sicker instead of getting better but by the 4th week I started to feel more like myself. My next appt is also in Aug. and I’m so hoping that the Dr can see a good enough change to lower my dose. I’m on 30mg/day so it is kind of high. Congratulations on your progress. Please keep us posted. I’m looking forward to reading what the Dr. tells you since I’m too trying to continue on the Rx (if it is working for me).

Caro

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