[emmtee]

in reply to: Back to square one… #1170135

I haven’t been on the bulletin board in a while, but I thought I should come back and tell you how things went with my endo (Dr. P.)

I told her everything that had happened with Dr. X. When I told her what Dr. X was telling me about RAI, she just nodded, but I could tell by her silence that she didn’t necessarily agree with either what he told me or the fact that he was speaking out of turn. She said she had spoken to Dr. X, and he said he would do the surgery if I really wanted it. I told her, “Absolutely not! If HE isn’t comfortable doing the surgery, then I certainly don’t want him doing it.” She said she didn’t know of any other surgeons in the area who do thyroidectomies for Graves’ patients, and I told her I’m happy to stay on the methimazole for now. Honestly, though, I feel a little deceived. I was told surgery was an option, and as it turns out, it really isn’t for anyone in my area.

BTW – I went to see my PCP a few weeks ago and saw Dr. X as I was getting off the elevator. I could tell he recognized me, but we both just looked away. 😮 My PCP is on the same floor as Dr. X. From now on, I’m going to use the elevator on the other side of the building.

Also BTW – I started going to the wound clinic a few weeks ago and my nurse the first day happens to have been my nurse in the hospital last April. I was telling her how I had been doing and mentioned my visit with Dr. X. As soon as I brought up his name, she made a face. She said he’s a good surgeon, but he’s not good with patients. So I guess it’s not just me.

[emmtee]

in reply to: Are my watery eyes due to Graves, or could I have an allergy? #1170360

I haven’t been to the bulletin board in a while, but I’m back to follow up.

I had a day and a half without headaches, so I put off calling the doctor. Then the headaches came back and my right eye started getting really red. I had a solid red patch that spread over almost half the white of my eye. I called on Thursday for an appointment, but my Dr. was out Friday so, rather than see a different doctor, I made my appointment for Monday the 13th.

By Monday, the redness was just starting to clear. (The middle was turning yellowish, like how a bruise looks when it heals.) I was really there to see the doctor about the headaches, but my doctor was more concerned about my eye. I explained that I had the headaches for several days before the eye redness. Since none of the OTC drugs helped the pain, I had been putting a cold, wet washcloth over my eye to take the edge off. When I wet the washcloths, I could smell the fabric softener in them, and I really think something got in my eye and caused the redness. But my doctor seemed to think that both the redness and the headaches were caused by an eye problem and insisted I see an opthamologist that very day, or I might risk losing the sight in my eye.

They made me an appointment and I went directly to the opthamologist. After a few tests, he told me that I had an infection and gave me drops to put in my eyes for 2 weeks. He said that my eyes “looked like they might get glaucoma someday” (whatever that means) and advised me to have my eyes tested annually. I have no family history of glaucoma, but I did some research to see what my doctors were all worked up about, and I see that my symptoms did resemble those of “Angle-Closure Glaucoma.” http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002587/ They really had me in a panic over nothing, but I guess it’s better to be safe than sorry.

Anyhow, the headaches and the redness are all gone now. My eyes aren’t even watering any more. I volunteered at the Humane Society twice last week and had no symptoms at all.

BTW – When my eye got red, I did try some systane eyedrops, and even though they didn’t help with the redness, they were soothing and my eye hasn’t watered since. So I finally understand what Bobbi has been saying about our tears. It sounds counterintuitive, but it’s true.

And, Shirley – I’ve had migraines for over 20 years, and these headaches were definitely different. From what I had been reading online, a lot of the drugs they use for cluster headaches are the same drugs they use for migraines. I was really hoping my doctor would give me a prescription that I could use for either kind of headache, but she thought my eye was causing the headaches.

[emmtee]

in reply to: Progression of GD info wanted #1170496

Just a note about your test results: Different labs have different normals, so it’s hard to gauge how far off your results were without knowing what your lab’s normal range was. If your lab at home had a different normal range than the lab in the other state, you need to take that into account when comparing the blood test results.

BTW – I think you should definitely speak to the patient rep. You’re not complaining; you’re making things better for the patients who go to this doctor in the future.

[emmtee]

in reply to: Diagnosed yesterday as having GD #1170464

Hi! I was just diagnosed in October and I want to offer some reassurance that things do get better. It may help to know that you can attribute your depression to your GD. When I was diagnosed with hyperthyroidism (they didn’t label it GD until my thyroid uptake and scan showed enlargement and no nodules) my PCP insisted that I get in to see my endo immediately and even called the endo to arrange it, but the scheduling nurse didn’t get the message and said I couldn’t get in for 2 months. From the way my PCP was talking (I guess my test results were pretty bad) I was convinced I might die before the endo could see me. I spent an entire afternoon crying, but the next day I called everyone I could think of until I got it straightened out.

Regarding reasons why surgery wasn’t suggested to you: There may not be any surgeons in your area who do thyroidectomies on Graves’ patients. I was offered all three options (RAI, surgery, or drugs,) but after I chose surgery, I learned that my endo doesn’t actually know of any surgeons here who would do the surgery. I did actually meet with a surgeon, and he explained that the surgery is harder when the thyroid is enlarged.

One note about the methimazole: When I chose surgery, my endo immediately put me on methimazole because it’s dangerous to have surgery when you’re still hyper. Your thyroid hormones need to be in the normal range before surgery can be scheduled. On my way out the door, I asked what would happen if I changed my mind and decided on RAI. My endo told me that I would have to go off the methimazole for a while before RAI could be scheduled. So definitely take your beta blocker, but if you are in a big hurry to have RAI, you might want to check with your endo before starting on the methimazole.

[emmtee]

in reply to: Are my watery eyes due to Graves, or could I have an allergy? #1170356

Thanks for responding. I’m having another episode tonight, and I remembered reading that cluster headaches are centered around your eyes and can cause them to water. I looked it up, and all the symptoms fit. My symptoms (excruciating pain, tearing, and runny nose) are all on one side of my face. I’ll call my PCP’s office tomorrow and try to get in asap. It looks like a lot of the treatments are the same drugs that they use for migraines, but they also suggested 10 mg of melatonin, so I’ll try that for tonight.

[emmtee]

in reply to: Back to square one… #1170132

Just got a call from my endo’s office asking me to come in tomorrow. I wonder what she wants to tell me that can’t be relayed in a message. 😮

[emmtee]

in reply to: Back to square one… #1170131

I know I couldn’t have surgery anyway until my labs are normal. After about 5 weeks at 20mg per day, my TSH is still low and my T3 and T4 are still high. (I don’t know the numbers, but the nurse will be mailing me the lab results, so I’ll know soon.) Last week, My endo doubled my dosage to 40mg per day, so I’ll have new labs done in a few weeks.

Even though my levels aren’t normal yet, I’ve seen a lot of improvement. My blood pressure is way down and I don’t have tremors at all now unless I’m extra stressed. I haven’t lost my Christmas weight (which I’m choosing to view as a positive for now) and best of all, my eyelid retraction has improved.

[emmtee]

in reply to: Uptake scan numbers? #1170139

My uptake and scan were done at a hospital. My uptake was tested at 4 hours and 24 hours. After the second uptake, I met with a nuclear medicine doctor and he reviewed my test results. He was the first one to tell me I had Graves’ Disease.

Later, when I met with my endocrinologist, I asked for copies of my test results. I know that different labs have different normal ranges, and I’m thinking this may be true of nuclear medicine offices as well. I really don’t know. If you really want to accurately compare your levels with normal levels, you should request copies of your test results, or maybe you could contact the facility and ask what their ranges are.

Just to give you an idea, though, these were the findings from my test:

4 hours: 57% (normal 5 to 15%)
24 hours: 73.5% (normal 10 to 30%)

[emmtee]

in reply to: Back to square one… #1170129

This surgeon (I’ll call him Dr. X) was recommended to me by an attending (Dr. D) at the specialty clinic of my local hospital. It’s the best hospital in the state, and I’ve gotten really good care there. Dr. D told me he hasn’t done a thyroidectomy in 5 years, but that Dr. X does them all the time. (Dr. X is in private practice, but has an office in the same medical building.) In retrospect, I think Kimberly is right – he probably works on cancer patients, not Graves’ patients. I think that he didn’t want to do the surgery because he knew he isn’t experienced at thyroidectomies for Graves’. It would have been nice if, when they received my paperwork, they had called and told me that he wouldn’t do the surgery instead of requiring me come all the way down there when I felt like hell.

As to why he gave me the speech about complications and RAI, I think it may have had to do with the female medical student he had with him. He was putting on a show, letting her see how knowledgeable he was. He was a bit taken aback when I left before the performance was over.

I have another issue that influenced my decision to have surgery. I have a surgical wound that is still unhealed after 8 months, including 6 weeks with a wound vac. I believe that my hyperthyroidism is hindering the healing and my endo (Dr. P) agrees. (Of course, Dr. X didn’t think so.) I haven’t worked in the last 15 months due to illness, and when I do go back to work, I will likely lose my insurance for a while. So it’s important for my wound to be healed and my Graves’ to be under control as quickly as possible. That’s why I chose surgery – because it will get me well the fastest. Drugs are my second choice. The main issue I have with RAI is the rollercoaster ride afterward. If I could be guaranteed that my thyroid would be killed off and my replacement hormone dosage stable in, say, 2 months, then I would consider it.

I saw the dermatologist today. The spots on my leg might be early pretibial myxedema, or they might be something else. The treatment is the same for both and the only way to say which it is would be a biopsy, so we’re just going to treat it and not worry about what it’s called.

I stopped by the specialty clinic (where I see my endo) and told the nurse about my visit with Dr. X. She’ll leave a message with Dr. P asking if she recommends another surgeon and letting her know that my second choice is to stay on meds.

Then I called my insurance company to verify that they contract with the wound clinic and find out how to get a referral. I need to get it from my PCP, so I made an appointment for next Thursday.

[emmtee]

in reply to: Back to square one… #1170124

I was just diagnosed in the beginning of October and started the meds at the end of November. I had a blood test right before the new year and I’m still hyperthyroid so my endo doubled my dose starting last week.

At my first visit with my endo, she told me she didn’t think I’d ever have a remission because my thyroid is so enlarged. That’s okay – I’ll be satisfied just to get my Graves’ under control for a while so I can get on with my life.

I’m just very frustrated today because my endo was pretty good about letting me chose the treatment that I thought was best for me, and then this surgeon acted like RAI was my only option. If that was the case, my endo would have said so. If I wanted RAI, I could have had it 6 weeks ago. Now I’ve invested these 6 weeks in drug treatment in anticipation of surgery. If I chose RAI now, I’d have to go off the drugs for a while beforehand. That would waste even more time.

Tomorrow (today, actually because it’s 2:00 a.m) I have an appointment with a dermatologist. I have a spot on my leg that I suspect may be from the Graves’ Disease. Hopefully this visit will go better.

[emmtee]

in reply to: Graves’ treatment prior to pregnancy… #1169860

Is the downside of partial thyroidectomy only a matter of recurrence? I would think it’s also a matter of the surgeon trying to guess how much of the thyroid to remove. What are the odds that he’ll get it exactly right? If he doesn’t remove enough, you’re back on anti-thyroid meds. If he removes too much, you’ll be on synthroid anyway, so why not just have the whole thing removed? Synthroid isn’t so much a medication as it is a synthetic version of a hormone our thyroids normally produce.

This really is something to discuss with a surgeon. Hopefully your January test results will be good and you won’t have to worry about it for now. ” title=”Smile” />

[emmtee]

in reply to: 18 years with Graves Disease and I am still fighting it. #1169809

$9K is a lot to pay for treatment that should be covered by insurance. Surely your insurance company contracts with other endocrinologists. You should be able find a new general practitioner who would be willing to refer you. It doesn’t sound to me like you’re getting very good care from your current GP, so you might want to make a change in any case.

I don’t know why so many doctors are unwilling to give referrals. A few years ago, my mom had a spot on her forehead that she thought was suspicious. She asked her GP to refer her to a dermatologist. He said no, that it was nothing. She changed GP’s and her next GP didn’t think it was anything either. She changed GP’s again and the third one gave her a referral. It’s a good thing, because the dermatologist found that it was pre-cancerous and needed to be removed.

I tried out the ABMS website that Kimberly referenced and looked up all my doctors just for fun. There were some that I couldn’t find right away, so I tried looking them up without entering the city/state info and was able to find them that way. Some of them had moved and not updated their location and some of them had their location listed as "private."

Good luck getting the medical treatment you need.

Marci

[emmtee]

in reply to: Recently Diagnosed and Very Confused #1169813

It seems like there’s a new one of us every month. I was just diagnosed at the beginning of October.

Regarding what you can do to reduce your chances of getting thyroid eye disease – if you smoke, you should stop. Even if you don’t, I would avoid second hand smoke. I don’t know of anything you can do to reduce your chances of having the skin issues, but it’s pretty rare so it probably won’t be an issue for you. I have a couple of spots on my calf, but my endo couldn’t say for sure that it was Graves’ related. In any case, she said the treatment for Graves’ won’t make it go away so I’m going to see a dermatologist.

I’m also curious why your doctor didn’t mention the surgery. Apparently it’s the treatment of choice (after the anti-thyroid drugs) in the U.K. but in the U.S. the RAI is the standard treatment. When I had my thyroid uptake and scan, the nuclear medicine doctor diagnosed my Graves’ Disease and said he’d see me back when I had my RAI. He just assumed that would be the treatment I chose.

[emmtee]

in reply to: Finally chose a treatment. Surgery it is! #1169826

Until I hear otherwise, I’m definitely not taking more than the prescription says. I’m just dividing it into two doses. I did receive the prescription from the doctor and I remember seeing "20 mg" but I don’t know the pharmacy abbreviations, so I couldn’t tell from reading it what the directions were. When I handed it to the pharmacy clerk, she noted that it was 20 mg, but that the tablets only come in 5 and 10 mg. Now that I’m going over it in my head, I remember that she couldn’t tell me the price until it was submitted to the insurance company, but she gave me the cash price and it was 40-something $, which is about double the price that was quoted to me for 30 tablets when I called last week to get the pricing of methimazole vs. levothyroxine. So if the clerk quoted me the price for 60 tablets, that would be 2 per day, and that would mean I’m taking the right amount and the real question is whether or not I need to divide it into 2 doses.

I was up so late last night that I overslept today and didn’t call. I’ll call tomorrow and maybe they’ll have an answer about the referral as well.

[emmtee]

in reply to: What do I need to know? #1169835

You may be aware of this already, but in case you’re not… I’m trying to make a decision regarding my treatment, and I checked into the cost of anti-thyroid meds vs. the cost of levothyroxine, just in case I ever lose my insurance. A couple of discount retail stores have lists of $4 generic prescriptions, and levothyroxine is on both their lists, as is my BP medicine (metoprolol.) Once you do get in to see a doctor, your prescriptions shouldn’t break the bank.

Good luck!

Marci

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