[Elainemdg]

#1060159

Hi again all! I went to the new Derm yesterday about an hour South of me. (The only one that would see me). He/she(his PA), took another ANA because my primary insists I do NOT have SLE. (And I had one neg ANA). Well, I had my monthly “butterfly rash”, (it’s more like light peeling. It goes from burning, to my skin feeling leathery, to peeling in less than 24hrs, about every 3-4 weeks), when I was there yesterday, so they basically said yes, it’s SLE before we got the Pos ANA late yesterday.
I have just one skin cancer, squamous cell, on my ear, but it & another area near it are infected-probably from me trying to mess with it putting different oil mixtures on it, (some Ayurvedic mixes). SO., FIRST, we have to treat the infection and also put a cortisone cream on it; then, we’ll decide what to do about the skin cancer. It’s not my first, both my parents & brother have had numerous basal & squamous cell carcinomas over the years. This is my first squamous, after having 5-6 basal cells removed over the past 25 years.
OK, as far as Graves: he took a biopsy of the myxedema-mainly because he’s concerned that its somehow interfering with circulation. (My body put a good show on yesterday for the medical students that were there-I even got to talk to the group about my genetic disorder!). The pre-tibial myxedema “bands” around each lower shin, were purple by the time I saw the doctor yesterday.
Has anyone else had this? He’s prescribed a corticosteroid, and is going to consult with some other doctors and get back to me.
He & the PA were also concerned about my eyes, (that looked pretty bad yesterday), my irregular heart rate, and my medications.

Surgery was brought up again, because of all my other health problems.
QUESTION: I keep reading accounts here that people’s T-levels had to be stabilized before surgery? I am currently on 40mg/day of methimazole-up subsequently since Jan, starting with 10mg/day. There has been NO CHANGE in my immeasurable TSH “level”. They haven’t tested ANY other T-levels since Jan., when I saw the endo for the one and only times, (he gave me a stack of orders for monthly TSH levels, adjusted the Methimazole per results). My next level is next week after my first eye appointment.
I plan on insisting on an immediate appt after my eye appt next week.

I’m getting scared about my eyes. With presently untreated glaucoma, (at the last appt my pressures were high, (2yrs ago), was supposed to return after 2 months for further testing & possible medications. They then changed their policy & wouldn’t take Medicaid. No other opth. Between here & Philly would accept me & Medicaid refused authorization for transportation. My primary was able to talk them into seeing me because of the Graves this past Spring, but my appt was originally scheduled for October. It became an “emergency” last week when my eyes got really bad. I see them next week.), chances of me losing my sight is very high.
I’m not proud to be on Medicaid. It just got to the point that no insurance company would touch me for less than $3-4000/month, and with my health problems, I wasn’t able to make enough money to pay for that limited insurance, PLUS support myself. Believe me, I waited for over 6 years, working against doctors orders, paying out of pocket, losing our homes, cars, marraige, and even residency of my kids-before I applied for assistance.
But I also learned a valuable lesson-my stubbornness cost me my life. Had I not walked out of spinal rehab 6 months early and gone back to work against doctors orders-I wouldn’t be in as bad a condition as I am now. My spine didnt heal correctly, and as a result, most of my life is spent in bed in a brace.

Sorry, just had another rough, painful day, and spent half the morning trying to justify why I deserve authorization for my medical care.
Any advice on the surgery would be appreciated!
Also, has ANYONE ever tried alternative methods for treating the symptoms of Graves? (Specifically the eye and myxedema?)
Thanks!
elaine

Diagnosed June, 2012 in thyroid “storm” after losing over 60lbs since March. Methimazole treatment begun Jan 2013, currently Methimazole 20mg BID with no change in TSH.

[Gabe]

#1180855

Hi Elaine. Welcome. Wow you have a very complex history and current situation. Hopefully you have a Primary Care Physician who can help you sort all this out. I’ve heard about the myxedema but haven’t seen anyone recently posting about it. So sorry you are dealing with that Graves’ symptom.

To the best of my knowledge (and I’m not a medical al professional) there is no alternative treatment for Graves’. The only treatments are meds, TT, or RAI. Anything else could further jeopardize your health or life.

Your question about TT requiring stable levels is very dependent on the individual and all their health status factors. Most docs want it within a normal range. If you are still very hyper based on TSH, I suspect your endo will continue to raise your Meth to stabilize you.

So sorry you have so much to deal with. It’s OK to vent and have a bad day on this forum. That’s what we’re here for…no judgment, just support

Best wishes,

Karen

[SueAndHerZoo]

#1180856

Hi Elaine.
I had surgery 6 weeks ago and was on Methimazole up until the morning of surgery. Even though we were able to get my free T3 and T4 into an acceptable range, my TSH never came up from it’s insanely low point. You may be able to have surgery with a low TSH as long as the other numbers are acceptable.

Good luck with your challenges…. you sound like a fighter and you will conquer this!
Sue

[Kimberly]

#1180857

Hello – So sorry to hear that you are dealing with all of this at once.

The preference before doing *any* surgery is to get thyroid hormone levels stabilized in order to reduce the risk of thyroid storm. If that isn’t possible, there are additional steps (such as administration of beta blockers and potassium iodide) that can be taken if needed to reduce this risk.

I’m a fellow patient, not a doc, but my understanding is that the risk comes more with Free T4/T3 levels that are too *high*, rather than TSH that is suppressed. As Sue noted, TSH can actually remain suppressed in Graves’ patients for quite some time.

I don’t recall – have you had an ophthalmologist take a look at your eyes? Although the process is often “watch and wait”, it would be good to have an experienced doctor on your team to monitor the situation.

As Karen said, there are no alternative treatments for hyperthyroidism that have been proven to be both safe and effective. Same with thyroid eye disease & pretibial myxedema, but here are a couple of links that might be of interest:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Thyroid Eye Disease study (must be fairly newly diagnosed):
http://graveseyediseasestudy.com/

Pretibial Myxedema study out of Italy (might be worth a discussion with your doctor):
http://www.ncbi.nlm.nih.gov/pubmed/23397966

Wishing you all the best!

[Author]

Posts