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Kimberly – no swelling, just double vision. I’ve never experienced that, fortunately.
Cat – I can’t say Graves’ makes me want to drink. I like wine for the taste. I am on a weight loss program and can only have two glasses of wine a week, so I share you sentiment of knowing better even when you really want one!
in reply to: Rapper Missy Elliott opens up about GD #1176659Thanks for sharing this. For those who only want to watch the discussion about her Graves’, skip ahead to 03:30.
On a somewhat unrelated note, I used to be a big fan of hers back in the day. The change in her eyes is drastic, much like mine has been.
in reply to: Unsure about response from Endo re: Eye problems #1176623WWWI2 wrote:Sorry, he’s and Endo. I have been to an Opthamologist prior to seeing this endo.I wrote this in another post but that opthamologist told me that whether he could see the whites of my eyes when I looked directly at him was his diagnostic criteria for Graves’ Opthamolopathy. That seemed a little curious to me too.
Bobbi – that’s what Shirley was responding to.
WWWI2 – Endos are familiar with TED/Graves’ ophthalmopathy because they see patients with it. In some areas, there are no neuro-ophthalmologists but that’s really who you should be seeing. At the very least, please don’t go back to the ophthalmologist who uses eye whites as a diagnosing factor. When I was diagnosed, it was a combination of obvious symptoms (protrusion, redness, swelling, etc.), eye pressure (a simple test in the ophthalmologist’s office), photos of the tissue behind my eyes (I apologize for not knowing the name of this test – I looked into this machine in another room with another office employee), a visual field test (the one where you sit in front of a concave dome and click a button whenever you see a light), and an MRI scan of my orbit (both with and without contrast). If you have insurance and think your vision or protrusion is changing, press for these tests.
The dryness and grittiness was common before I had TED, but after my Graves’ diagnosis. I found it hard to wear contacts after a few days but switching to dailies helped, as did drops and protecting my eyes from the sun and bright lights – even indoors I wore sunglasses.
in reply to: Taking Levoxyl and Prevacid. #1176519EllieT, this is really a question for your pharmacist or physician – preferably your endocrinologist or your gastroenterologist. Why do you take the Prevacid? I have been on omeprazole for nearly two years for severe GERD, ulcers, and temporary gastroparesis (when I was hypo as all get-out). Both my endo and GI were in communication about me regularly, and agreed I could take my Synthroid, propranolol, and omeprazole at the same time in the morning. Because I keep my Synthroid on my nightstand, I usually take it a few minutes before I get to my medicine cabinet for the propranolol and omeprazole, or hours before if I end up sleeping late on the weekend, and was told this is perfectly fine since neither propranolol nor omeprazole are supplements or vitamins. My endo also told me the same is true of Claritin, which I take during the late spring and summer for seasonal allergies.
Because I get terrible GERD symptoms if I eat or drink too soon after taking my omeprazole and not letting it start doing its job first, I usually eat 30-90 minutes after taking all my morning meds, including Synthroid.
in reply to: Sports Injuries and Graves Disease #1176495Hmm, I have no insight to offer but I’d be very interested in hearing what you find out. I started running over the summer but was quickly sidelined with shin splints (posterior, to be exact). I never even thought about a link between Graves’ and shin splints – I’ve tried really hard to not instantly blame Graves’ for every ailment I have.
I picked back up recently and felt it on only my second run last week, but I purchased some kinesio tape and will try that tomorrow before my next run. On a personal note, I tend not to trust podiatrists as they aren’t MDs/DOs. I was thinking of calling up my old orthopedic surgeon if this persists – I had knee surgery in 2005. Have you considered seeing an orthopedist?
in reply to: PTU effectiveness vs Methimazole #1176425I would ask your endo about taking the beta blocker as I think it would really help that anxiety feeling, HR, and palpitations. I always have had low blood pressure, but taking the beta blocker does not lower mine significantly or noticeably. I do remember when I was first diagnosed, they told me to take 20mg propranolol at once in the morning and I felt like I was sinking into my mattress. I called and explained this feeling and they said I was taking too much and my bp was probably way too low. Once I started taking 10mg every 6 hours (now down to 10mg once a day), I felt a lot better and didn’t even notice the effects of it unless I missed a dose.
PS – I took PTU and did very well on it. My thyroid was a pesky little bugger and I could not achieve remission and had RAI eventually, but the PTU made a huge difference compared to how I felt pre-diagnosis/during the time it took for the PTU to kick in.
in reply to: Memory Tips and Tricks… #1176363If you’re an iPhone user, you can use the pre-installed calendar to keep track of appointments or other tasks. When you are adding a new calendar item, say an endo appt, be sure to scroll down, tap Alert, and then choose how early you want your phone to remind you in the form of a sound and a message on your screen. You can also use the Reminders app (pre-installed also) to create a sort of to-do- list with reminders (sounds and on-screen messages) that you can either set to go off at a certain day or time, or at a certain location – so you can set a reminder to ask Dr. A about symptom X, and you phone will remind you the next time you’re in close proximity to Dr. A’s office, or 5 minutes before your appointment, or both!
Just make sure you go into your Settings > Notifications and make sure you have your Calendar and Reminders set to On for Notification Center and On for View in Lock Screen. And then make sure under Settings > Sounds, you have Calendar and Reminder set to alert or some other sound of your choosing. Neither of this will make sound if your phone is set to silent, but the screen will still light up.
It is definitely the propranolol. My endo, cardiologist, and PCP all confirmed this. I don’t know if other beta blockers can cause this or if it’s just propranolol. My LDL was low (and my HDL was high) when I had full labs at the time of my Graves’ diagnosis (I was hospitalized due to a resting heart rate of 150+ hence every test under the sun). My cholesterol was normal/healthy in years prior to developing Graves’ as well. One year later, my LDL had doubled. My endo told me not to worry about it because it was due to the propranolol, not my diet or lifestyle. I haven’t had it checked since because I was without health insurance for a period of time last year. I’m having it checked next month at my annual physical and will certainly report back.
Me! I have been on beta blockers (propranolol) for two years and 11 months. February 7 will be my three-year anniversary with Graves’ and propranolol, even though I had RAI almost two years ago. My levels remain unstable and I am constantly adjusting my Synthroid dosage, but for some reason, I cannot go without the beta blocker. I went to a cardiologist this past summer and had a full workup, including a 48-hour Holter monitor, and everything was normal. However, when I forget to take my beta blocker, by lunchtime I am a tachycardia mess and need to go home to get it. I started out at 10mg 4x a day at diagnosis and for a short while after RAI, and am down to 10mg once a day (before breakfast). My cardiologist and endocrinologist both said it’s safe for me to be on it long-term, but my primary care doctor wants me off it as it is doubled my LDL cholesterol without any dietary or exercise changes. I want off it as Synthroid and omeprazole (for severe GERD) for the rest of my life is enough.
As for my BP, it was low before Graves’ and has remained normal-to-low since diagnosis and subsequent treatment. I wonder what would happen to my BP were I to wean off beta blockers. I have a fairly stressful job (PR) and am definitely Type A.
I would do anything to stop taking beta blockers, and my cardiologist is willing to explore something other than propranolol, but I don’t ever want to feel hyperthyroid again.
How long have you been on them? Which one(s)?
in reply to: why ct scan instead of MRI? #1176259During my TED journey, I only had MRIs – one with contrast but I had a bad reaction to the contrast so a year later I had another orbital MRI without contrast. Both showed my neuro-ophthalmologist and oculofacial surgeron what they needed to see. Because my OD was done my both the oculofacial and an ENT surgeon using an endonasal approach, he performed a CT a week before my surgery. I hadn’t had an orbital CT up until that point.
in reply to: on methimazole.a.month..too.soon.to.lower? #1176123I was on PTU for a year with no side effects and no liver problems.
in reply to: fat orbital decompression #1176035As for your last comment, it probably depends which complication you’re talking about. My surgeon does hundreds of ODs a year and said the chance of developing double vision with a fat decompression is lower than with a bony decompression or a combination of the two. Still, I had no complications and no double vision with the combination of decompressions. The medial walls were done endonasally, the floors were done through my lower lids, and the fat was done through my upper lids.
Sounds like a second opinion might relieve some of your concerns, but then again, every surgeon is going to have a different approach and different personal stats.
in reply to: fat orbital decompression #1176033I know it sounds scary (people balk when I tell them what I had done), but you cannot tell that there is bone missing. I actually had both bone and fat decompression – both medial walls, both orbital floors, and fat behind the eyes. My surgeon personally limits lateral wall decompression to extreme/severe proptosis, and mine was only moderate. However, the results were phenomenal – no double vision, 4mm decompression in left eye, 6mm in right eye, both now at 19mm. It doesn’t look like any bone is missing and I cannot feel it. Trust me, it sounds a heck of a lot worse than it is.
But ultimately, Shirley is right in that your surgeon will outline the best plan for you. Who knows, it may not involve any bone. At first, my surgeon looked at me, reviewed my CT and said, “I don’t want to do any bony decompression, just fat. Bony runs a higher risk of double vision.” Then I showed him the photos of me before TED and he quickly changed his tune. Although my proptosis didn’t look too bad to people who didn’t know me before TED, it actually was very noticeable because my pre-TED eyes were so deep set and “squinty.” So he decided both bony and fat would give me the best chance at looking like my old self.
I’m happy to report that except for all the extra weight this Graves’ roller coaster has left me with, I do look like my pre-TED self.
in reply to: Going to get RAI in a few minutes #1175974I only had 10 mCi, but my uptake was very high so I only needed a small amount to nuke the thyroid, which was successful after about six months. The sweatiness is probably the thyroid dumping. I felt like a big hyper mess for about two weeks if I remember correctly (it was almost two years ago now). Hope you start feeling better soon.
in reply to: fasting after OD surgery #1175998Absolutely not. I needed my strength to heal. I was too sick from anesthesia (everyone in my family gets really sick from it) for the first 48 hours to keep anything down, but after that, I enjoyed lots of good, albeit healthy, food. It was one full week before I felt human again, two weeks before I could go back to work part-time, three weeks before I could go back to work full-time, and four weeks until I could get through a 75-minute hot yoga class. Fasting would never have been an option for me unless I planned to remain in a percocet-like coma for a month. You won’t be able to take any pain meds on an empty stomach either.
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