[Elainemdg]

#1060138

Hi everyone,

A “quick” intro, (which isn’t easy for me, considering…), I’m 53f, in the Poconos, from N Florida, 3 incredible grown children, I have a “mutation” of a genetic disorder called nail-patella syndrome, (mutation meaning I’m a spontaneous mutation, no family history with a normally dominant gene, and the placement and expression of the gene is different in me and my son than others with NPS. We have every anomaly associated with with NPS and then some-ei: osteoporosis diagnosed at age 38, (after a spinal injury), one diseased kidney(born w just one), arthritis since 16, glaucoma, etc.), Graves’ disease and possible SLE (derm says yes, primary says no, one pos ANA, one Neg). I’m a former healthcare professional which makes all of this difficult for me-and especially my doctors.

Was suspected of Graves/Hyperthyroid for YEARS never being able to gain weight & w huge, bulging eyes, but was always borderline…until 5 years ago. I went from 105lbs to 186lbs, and my thyroid turned borderline hYPO. LOL!
Last year, I went from 186 to 105lbs in 3 months, went to ER in June for tachycardia, dizziness, unable to sleep, exhausted & chest pains. Was diagnosed w thyrotoxicosis & severe anemia.
My grandmother also had Graves. Much to the dismay of my primary, (who is also a friend), I decided to try & go it on my own for awhile, treating it symptomatically. It was going ok until Dec and Jan, when we had to increase the Toprol so much to control my heart rate & I developed pre tibial myxedema.
Be back later-battery dead!!

[Kimberly]

#1180692

Hello and welcome! If you have received a definitive diagnosis of Graves’, he GDATF recommends one of the three conventional treatment options (anti-thyroid drugs, radioactive iodine, or surgery). Obviously, ALL three of these have risks, so it’s important to do your research and make an informed choice. But going without any treatment has significant risks as well. The Toprol is a “beta blocker” that can help mask the symptoms of hyperthyroidism, such as a racing heartbeat and tremors – however, it does *not* do anything to bring thyroid hormone levels down. If thyroid hormone levels remain elevated, this can cause long-term damage such as heart issues, bone loss, muscle wasting, and possibly thyroid storm. The “Treatment Options” thread in the announcements section of the forum has two nice links that go through the pros and cons of each of the three options.

[npatterson]

#1180690

Dear Elaine,

I just read your post, and it has made me pretty much speechless–and that doesn’t happen very often. Is it good, or bad, that you are also a healthcare professional? You obviously know more than the average patient, but I suspect you see doctors who are more specialized than average doctors. Let’s hope you make a good team.

If nothing else, we will be here for you to have a place to communicate with others who also have Graves’. We will listen to you, hear you, and support you in any way we can!

Take care,

Nancy

[Elainemdg]

#1180693

Hi!! Sorry, was having a bad day when I wrote that!! I sent this to someone that wrote me-minus geographical stuff , explains more about what I’ve done, (methimazole in increasing doses for 8 months with no change in TSH), and the decision I made:
……
I spent my first 2 years up here living & working (webmaster) at The Himalayan Institute just North of Honesdale. I got off all but one of my Meds at the time & was in the best physical condition of my life-DESPITE my chronic health problems. I can’t say enough about Yoga, meditation and Ayurveda.
I wish I was able to do more these days-I do my practice whenever I’m able, maintain a vegetarian diet, and when I can afford some of the supplements-I take them & they make a huge difference in how I feel, (hemp oil, hemp protein powder, Essential Fatty Acids, Probiotics, organic multi, etc).
I’ve also just discovered that unrefined coconut oil helps the rash I get on my face every 3 weeks or so, (lupus). I’m going to start using it on my legs, (myxedema) & see if it helps.
Today is a rare “good” day-so far, so I’m going to get some cleaning done. Considering I slept for 28 hours off & on…I’ll probably be up all night tonight.
Oh, I FINALLY talked to the eye doctor, (who hasn’t seen me yet-my appt was made 5 months ago for October), they moved up my appt to the 2nd after I told them I can’t use my right eye, (feels like a large twig is stuck in there & burns like heck at the slightest breeze.). They told me the VisineAC & eyewash were “making it worse”, so my friend is picking me up some lubricating drops.
My Derm appt for two skin cancers on my ear & my legs is Tuesday.
As much as I hate it…I’ve made the decision to have the surgery. After 7 months on methimazole, my TSH remains so low they can’t determine it. I’m on large doses of Toprol to try & keep my heart rate down (and arrhythmias) & with my eyes & legs-plus other “signs” of Graves, along with my other health problems; I’m going to break my vow of “no more surgery, for ANYTHING!”.
I wish I was like my grandmother, never took any Meds/surgery, was doing cart-wheels at age 80, drinking a beer when she got “too worked up”-and lived to 102!! Lol, her sister, also with Graves, started smoking POT when she was 82 to “control this thing”!! Well, she also drank her share of wine too-and stayed up all night playing Jazz on the piano! That lady had more boyfriends at 84, than I’ve EVER had!!
Unfortunately, my body is apparently different & there’s just too much going on to risk pickling my liver or getting arrested!!

elaine

[Elainemdg]

#1180694

Thanks Nancy! Unfortunately, I don’t have much of a “team”. Because no insurance company would touch me with a 10-foot pole, (actually, more like a min of $3500/mo premium for VERY basic coverage-pole), I am currently on Medicaid. Believe me, although I’m VERY grateful it’s here for people like me; it’s horrible, especially living where I do. BUT, I found out if I moved back home to Tallahassee, my kids would have to take me to Gainesville & Miami to see specialists there who will accept a new Medicaid patient. I’m in the process of switching to Medicare-but have been told it will be the same problems I have now.
I’ve seen the endocrinologist ONCE, 7 months after my primary + ER docs diagnosed me. They put me on Methimazole-didn’t have any “choices”, it’s Medicaid protocol. I’m not even sure they’ll let me “choose” the surgery-although my primary doc, (a friend), said with all my other health problems, they’d push for authorization.
I was diagnosed in June ’12. In July ’12, Pa sold Medicaid to the highest bidding private insurers. Between, then and this past March, few specialists took on new Medicaid patients. While I WAS able to see an endo, (a friend of my docs who was more interested in my genetic disorder), I wasn’t able to make appointments with an eye & dermatologist until March. My appts? This Tues and, originally, the end of Oct. (now the 2nd of Sept).
So, I’ve had 2 nasty either basal or squamous cell carcinoma’s on my ear since June’12, and Graves with heart/eye/leg/lost much of my hair; saw an endo once at the beginning of Jan’13, haven’t seen eye or Derm…still waiting for some cardiac tests (authorization), have been hospitalized for transfusions 3-4 times, (I can’t remember one time because I was brought in unconscious in A Fib & with a broken shoulder)…
I’m hanging in there as best I can, taking supplements when I can afford them. I’ve been able to calm my ulcers down-for now, because they seem to cause the most “life-threatening” problems with anemia + my heart condition aggravated by the thyroid.
Right now, as I’ve said, IF we can get authorization, I’ll give in to the surgery. I just don’t have a good track record with ANY kind of surgery. Oh, as far as radioactive iodine-Bill (Doc) is afraid of putting me through it because of my one, barely functioning, kidney. It’s also difficult to get authorization for.
I understand that dialysis is in my future if I want to stay alive-but I’m doing my damnedest to keep my lonely lil kidney “pumping” as long as I can!!

NOW, I’m actually going to COOK today, lol, my friend and her hubby were so excited they went to the store & bought me everything I need for a good, down-home, southern dinner. (I may cook/stem the chicken, but I won’t eat…unless I’m forced to, of course… southern fried chicken, mashed fresh taters, gravy, biscuits, greens, fried green tomato, and my special salad!! TIME TO COOK!! (A once every 2 months or so thing. Usually I just have salads, stir fry, and LOTS of kitchari!! And other Indian dishes-LOTS of Jasmine rice!!

[Elainemdg]

#1180695

PS I misspoke about the RI. Sorry, my mind is on a million things to do today…although I LOVE cooking for a group of people, I so rarely do it anymore…and I get VERY nervous of screwing something up! (Which my poor oven has had to be replaced once (creme brûlée) & MAJOR cleaning multiple times…). “If you don’t use it, you lose it”- unfortunately, so true in my cooking.
Anyways, I’m taking a break & called Bill(doc) about this forum. He knows I’m not big on public “forums”, but because of my situation, I decided to join this one.
In 2006, 4 months after losing my fiancé and less than a year after losing our “miracle baby”; I was diagnosed with Ovarian Cancer. Long story short, I went through hell for almost 2 years & had a LOT of radiation (it had spread), chemo and surgery. This is why he’s hesitant of me undergoing ANY more radiation than I absolutely have to.
When I was first diagnosed w Graves, I wasn’t big on going on ANYTHING, and assumed that, like my grandmother & her sister, I’d go into remission. (Minus the booze & pot . Bill suggested surgery right away-knowing my aversion to surgery, his concern was and is, my other medical disorders.
Right now, because my eye pressures have been high lately, (tested in the ER), with the glaucoma + graves eye disease…the worsening of the myxedema on my legs, (has anyone else’s turned cyanotic, (dark purple), after a long day?), my mitral valve regurgitation, (I’d been hospitalized & converted several times before Graves “came on”)-I now have chest pains & an arrhythmia I can feel almost daily & although I’m already on 225mg ToprolXL/day + Verapamil, I end up in the ER every few weeks because I feel it getting worse & am afraid to take anything else.
After this past week with my eyes getting so bad, my friend picked me up a patch because I just keep my right eye (the worst), closed most of the time…and that WAS my “good eye”. I’m ready to just get it over with.
We’re seeing NO change after 8 months of increasing methimazole.

I think I’m looking for someone to talk me out of surgery…as much as I want all these symptoms to go away; surgery scares the crap out of me!!
Has anyone else had major prior exposure to radiation before IR?
And I understand there’s no “tested” natural treatments for Graves..I DID find one article on dietary recommendations that are *supposed* to help; I haven’t gone all the way with it-has anyone else?
Thanks & sorry for the mix-up.
Ps I’ve been having chest pains for about an hour…another 15 minutes or any other symptom, (sweating, nausea, dyspnea…), and my Southern dinner will have to wait…

[Kimberly]

#1180696

Wow, you have had WAY more than your fair share of burdens to deal with.

You might start a brand-new thread to get feedback from those who have had surgery, as some of our regular members will only check in on specific threads where they have expertise to offer. This is also a nice resource site from the American Association of Endocrine Surgeons:

(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).

http://endocrinediseases.org/thyroid/surgery.shtml

Wishing you all the best as you make this difficult decision.

[Author]

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