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#1 March 18, 2018 16:36:05

Hybrid21
Registered: 2018-03-18
Posts: 4
Profile  

Second go around w/Graves

Hi all,

About nine years ago, I had routine blood work done that showed I was hyperthyroid. I didn't have any symptoms except a racing heart. I lived in WY at the time (limited medical care), so they sent me to an Endo. in Denver. The Endo. did more blook work and did an uptake scan. She said I had Graves. I was put on Methimazole 10mg and after two months, it was lowered to 5mg. Unfortunately, I don't recall how long I was on it, but I do know my thyroid #'s started getting better, which is why they lowered the dose after two months and eventually, they returned to normal. At the time, I had just stopped smoking and was taking steps to live a healthier lifestyle. I took Chantix to help with the smoking so I thought that either the stress on my body of quitting smoking or the Chantix kicked off the Graves Disease and thought that would be the end of it. As a side note, I also thought my racing heart was from the Chantix until I found out I had Graves.

Unfortunately, I started smoking again after about eight months or so. I tried quitting 5 weeks ago, but spent two weeks waffling back and forth between smoking one day and wearing the patch the next. I started feeling sick (like the flu) and thought it was likely because I couldn't make up my mind whether I was smoking or not, so I made up my mind to get serious and quitting and stopped altogether. After two days, I felt worse. I was worried I was having an allergic reaction to the patch, so I quit using them and stopped cold turkey. After the first week of cold turkey I still felt bad so I went to the Dr. (small amt of congestion, nausea, eye pain, sore throat, inability to fall asleep, ear pain, foggy headed, confusion, etc. Since they squeezed me in, I saw a Nurse instead of a Dr. She said it was a sinus infection and gave me antibiotics. After two more weeks, I no longer felt like I had the flu, but I still felt horrible. I felt dizzy several times each day, I had anxiety, a racing heart, irritability, shaking hands, still had mild eye pain (like sinus pressure) only now my eyes were watering (out of the outside edge, not the inner edge). I was fatigued, and I had no problem falling asleep, but I was waking up almost every hour. I was falling back asleep easy enough, but waking up so often affected how much sleep I was getting. I was also super emotional and still not 100% mentally or intellectually.

I went back to the Dr (and saw a Dr this time, not a nurse). I told him about my symptoms and he ordered a blood test and a CT scan for a swollen lymph node above my collarbone. It's not where the thyroid would swell, but appears to be where the supraclavicular lymph node is. This is actually not something that started with the other symptoms. I've had it for several months, but since it is soft and not hard like most cancer nodules in that area, I wasn't concerned about it so decided the next time I went to the Dr., I would mention it. I mentioned it to the Nurse on the first visit, and she said definitely come back in if it was still there after the antibiotics, which it was. I doubt if it is related to everything else, but wanted to mention it.

That Dr. visit was last Tuesday, the 20th. I still feel the same, except my dizzy spells are now only about once or twice a day. Other than that, everything else is the same. Some nights, I get good sleep, but other nights, I wake up a lot during the night. The Dr. office called me back on Wednesday evening and left a message for me to call them in the morning. I did but was told that Dr. and his staff were out but they would have them call me back when they were back in.

I thought that was odd, but remembered that they post medical records online the same day, so I didn't press it and signed into the medical record portal to see my blood results. What a shocker. My Thyroid results show my T4 free is 3.20 ng/dl, T3 Free is 12.49 pg/ml and my TSH is less tahn 0.005, so I'm hyperthyroid again and I'm pretty sure that means the Graves is back.

Since I didn't have any symptoms last time, I didn't think about it so didn't point out to the Dr. that I've had it before. I've had my medical records sent over about five or six years ago, but don't know if they looked that far back on this visit, so I called them back to bring it up and asked when I would hear back since I am extremely symptomatic and would like to start fixing this as soon as possible, especially in light of my eye symptoms. I also realized my vision has been getting blurrier over the last few months, but I thought it was a sign of aging. Now I'm worried about it. They told me this Dr. & his staff wouldn't be back until next week!

In the mean time, the imagery place called me to schedule the CT scan for the lymph node and I told them it looks like I'm hyperthroid again and might need a scan for that also, but the Dr. is out. They told me to put the CT scan on hold and wait to talk to the Dr. so I don't have two separate tests done on two dates, when they could combine everything. So I'm waiting and since one of my symptoms is irritability, I'm extremely irritated at the Dr. & his staff for being so blase about everything. This is a clinic with lots of Drs. & lots of Staff, and he is a fill-in for my regular Dr. who had too many appts the day I came in to see me. I feel like he could've given her an update and had her talk to me about it asap, instead of having me wait four more days, in addition to the past several weeks when we didn't know what this was. Sorry for the long rant. My excuse for being so long winded is I haven't started treatment yet and am symptomatic.

At this point, I don't know what he's going to do or suggest, since he didn't seem to concerned about having me wait for him to get back. If he says he wants to start me on meds and leave it at that, I know I should still make an appt with an endo (probably the one I saw last time). But should I start the meds before I see the endo, or wait? What if he refers me to an endo, but the endo has a waiting list of a month or more? Last time, I recall a long wait, but I wasn't symptomatic, so I didn't worry. I'm really concerned about my eye symptoms since I've read any damage to the eyes by Graves is likely irreversible. Am I panicking over nothing, simply because I have anxiety from the Graves?

Also, on a side note, I've noticed a lot of people say they had a really hard time getting a diagnosis from their Dr. Do a lot of Drs. not do blood work or do they not take it as seriously as they should when the thryoid numbers are all out of wack? I'm just trying to understand how a Dr. could miss it when it's very obvious on a cbc panel.

For those who made it to the end of this long diatribe, thank you! And thank you in advance for any help.


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#2 March 20, 2018 12:07:42

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4072
Profile  

Second go around w/Graves

Hello and welcome - a few notes…

Definitely ask your primary care provider if you should get started on antithyroid meds while you wait to see an endocrinologist. There are endo shortages all over the country, so many primary care docs are comfortable prescribing & monitoring these meds until the endo can take over. You can also ask the endo to place you on a cancellation list if your schedule is flexible - if someone with an existing appointment cancels suddenly, you can have their spot.

You mentioned needing a scan for both the mass and the Graves'. Ask about doing antibody testing (TSI or TRAb) in lieu of the scan for Graves'. The thyroid uptake & scan is primarily useful in determining the cause of hyperthyroidism *if* antibody tests for Graves' come back negative (an inflamed thyroid spilling out stored hormone vs. an overactive thyroid nodule).

Please continue your efforts to quit smoking! Dr. Fatemeh Rajaii of Wilmer Eye Institute, Johns Hopkins Medicine did a presentation for the GDATF in Baltimore last year. She explained that the current number of cigarettes is a risk factor for thyroid eye disease, so patients can show improvement in their risk profile fairly quickly after quitting.

Remember that YOU are the customer, so please don't be afraid to be the squeaky wheel - or to seek out a second opinion if your doctor isn't taking your concerns seriously.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 March 20, 2018 14:44:48

Hybrid21
Registered: 2018-03-18
Posts: 4
Profile  

Second go around w/Graves

Thank you for the advice! I went to the regular Dr yesterday and he asked what I was prescribed last time, looked it up in a chart book, prescribed 10mg of Methimazole 3 x's a day and said all I need to do is get the CT scan w/contrast of the lump above my collarbone and then come back in a month to see how I'm doing. He said I would feel better in no time. I reiterated that my eyes were bothering me and I was worried it was from Graves and he looked at them with a light and said he didn't see any pink eye so I shouldn't worry since Graves can create all sorts of symptoms that go away once you're put on meds and sent me on my way.

At that point, I knew I'd better see an Endo. He's a nice guy, but he doesn't seem to know a lot about Graves. I figured at the least I could call an Endo for an appt & ask for advice on the phone about the dosage of Methimazole he prescribed to make sure it was okay to take before Im able to get in with the Endo, but I lucked out. One of the Endo's had a last minute cancellation. It wasn't with the Endo, but with her nurse who they said was a longtime Endo nurse and knew just as much as the Dr, so I set it up.

I went in to see her this morning and I'm so glad! She wants more bloodwork to get the antibody count (TSI) since the last blood work didn't have that. She also said to cancel the CT scan w/contrast since the iodine contrast can really aggravate my Grave's/Hyperthyroidism. She said it's not completely necessary to do an uptake scan, but that it could turn out to be useful if I was game for it (I said okay) and she also scheduled an ultrasound. She said maybe it will give give her some info on the lump also, but if not, we can reevaluate what to do about it then. Since I said okay to the uptake scan, I can't take the Methimazole until afterwards (I had only taken one yesterday before they called to say they could get me in, so don't take any).

And the best part? She put me on Propranolol! It has already lowered my heart rate from 112 to 68 Hopefully it will mean I can finally start getting some good sleep and will no longer have anxiety or be an emotional basket case.

This is one tough disease. I am really shocked it's not more well known. I am so, so, so happy to have the beta blockers while waiting for all the tests next week. And I am absolutely positive I am done smoking for good. I don't want to risk this getting any worse, and to be honest, I've felt bad enough since I quit that it was the last thing on my mind, which was kind of a blessing in disguise.

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#4 March 22, 2018 00:50:27

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 142
Profile  

Second go around w/Graves

I'm so glad you were able to see someone and get those tests ordered. It sounds to me like the nurse really knows her stuff. I know some other Graves' patients who actually see nurse practitioners who work under their endo and they're very happy with the arrangement.

When I was first diagnosed hyperthyroid by my GP, she referred me to an endo and ordered an uptake and scan. In the interim, she doubled the dose of the BP medication I was already on. I think this was to help with heart palpitations and tremors and to lessen my chance of thyroid storm. It didn't really do much for my anxiety. I still had that any time I was hyperthyroid. Hopefully you can get your uptake and scan out of the way quickly and start on your methimazole. I think I was able to schedule mine within a week to 10 days. My GP made a phone call and convinced the endo's office to schedule my appointment in 2 weeks. (Otherwise it would have been 2 months). My endo didn't prescribe methimazole until my 2nd appointment, after I had time to think about my options. I started feeling an improvement within a few weeks, even though it took longer for my blood tests to come around. My initial dose was 20 mg/day taken in two doses.

When I was diagnosed, I had some eye symptoms in my right eye: eyelid retraction and lots of tearing (watery eyes). The eyelid retraction completely cleared up once I became euthyroid on the methimazole. It sounds counterintuitive, but eye drops actually help the tearing. Graves' can cause the consistency of our tears to be thinner, so they don't lubricate our eyes - they just drip out.

Edited emmtee (March 22, 2018 00:51:40)

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#5 March 26, 2018 18:56:28

Hybrid21
Registered: 2018-03-18
Posts: 4
Profile  

Second go around w/Graves

Sorry for the delay. I didn't realize there aren't email alerts for new activity.

I agree about the beta blockers. The first day the beta blockers seemed to relieve all my symptoms (or maybe it was the stress lifting since I finally knew what was going on), but after that, it's only improved some of my symptoms. My anxiety and emotionalness (I know that's not a word) are still there and I'm still having issues sleeping about every other night, even though I'm taking a beta blocker before bed. Those are all issues I thought the beta blockers would take care of but I don't feel nearly as horrible as I did, so that's a step in the right direction.

I have my ultrasound and start my uptake scan tomorrow, with the second 1/2 of the uptake scan on Wed and she said I can start the methimazole right after I finish the scan.

She asked me to schedule an eye appt because there's a particular test she wants done so I had that appt today. He measured my eyes and said my left eye is normal at 19 but my right eye is showing Grave's Opth at 22 (I can only guess that that is how far out of the socket my eyes sit), but he thinks it will resolve on it's own as long as I'm adequately treating the Grave's. I didn't realize it until after my appt, but my eye Dr. is an Optometrist, not an Ophthalmologist and I noticed on my Nurse's notes, she wanted an appt with a Ophthalmologist. I'm hoping that's okay. My next appt with her isn't for a month, unless she needs to change something after seeing my scan & ultrasound, but my eye Dr. is sending my results, so if it's not the proper test or if she's not happy, I should hear something.

I have a call into her office due to the beta blockers. My blood pressure has been in the 70's/50-60's a few times a day since I started taking the beta blockers to reduce my heart rate. It's normally 90's/80's. I called her office today to let her know to expect my eye report from the eye dr. and also to ask about the blood pressure. I didn't think to ask about the optometrist vs. ophthalmologist. The person who answered said we can discuss my eyes at my follow-up after she gets all my tests together and I've been on the meds for almost a month but she wants to check with the Nurse specifically about the blood pressure because she thinks that might be too low. I hope it's not. At least not too low that I have to stop taking the beta blockers before the methim. has a chance to start working and lowering my symptoms.

Thanks for everyone's support here. It's been really great.

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#6 March 27, 2018 07:06:51

Liz1967
Registered: 2014-02-25
Posts: 255
Profile  

Second go around w/Graves

An ophthalmologist is an MD, went to medical school, did residency in ophthalmology and then usually a fellowship if he specializes. An optometrist is not a medical doctor, cannot do surgery, prescribes glasses but has had many years of training and oftentimes is as good as the ophthalmologist in diagnosing and treating general eye conditions. In this case, I would see the ophthalmologist. Exophthalmometry measures how far eyes protrude, and tests for dryness, color vision, muscle balance and pressure should also be performed. The eye disease is unpredictable. It can occur with normal thyroid levels and can worsen at any time. There are no guarantees so you really do need to be under the care of an ophthalmologist familiar with Graves or even an oculoplastic surgeon who would ultimately perform eye surgeries if needed. Watch for changes in color vision, especially if reds seem faded, any double vision to the sides, more exposure of the whites of your eyes, extreme dryness, pain, etc.

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#7 March 27, 2018 16:36:28

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4072
Profile  

Second go around w/Graves

Hello - Check out #7 on this list for info on getting email notifications…

https://gdatf.org/forum/topic/42254/

Hope all goes well with the scan!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#8 March 27, 2018 17:42:06

Hybrid21
Registered: 2018-03-18
Posts: 4
Profile  

Second go around w/Graves

Thanks everyone. The more I thought about it last night, the more I panicked so I asked my Endo's office for a good ophthalmologist that either specializes in Grave's or knows a lot about it and they referred me to an Ophthalmologist they said is really good. It turns out she's an Oculoplastic Surgeon. I googled her and she's published on TED before, so I think she's a good pick. I called and left a message (she practices in another state twice a month) before my ultrasound & taking the nuclear pills for the uptake and all the stars aligned since her office called back from the other office before I went to the first part of the thyroid scan They were very thorough on the phone and asked for a lot of info about my history and my current symptoms, test results, etc. They said since I'm symptomatic, they can see me when they are back here tomorrow afternoon and asked to get my labs over to them. I called the Endo and they were able to accommodate the request so I've pleased it has all worked out so well. I have a feeling that's a very lucky break.

And thanks Kimberly for instructions on getting notifications. That's really helpful.

ETA: I signed into my medical portal and my TSI result is posted. It's 386% baseline. It says <140% is the reference. Since I'm symptomatic and I've been diagnosed with it before, I was expecting it to come back positive so it's no surprise. I can't believe there are people that have been feeling like this and fighting this disease for so many years. It's exhausting.

Edited Hybrid21 (March 27, 2018 21:10:36)

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