[PhysChic]

in reply to: Agranulocytosis?? #1184202

Yea, she pretty much responds to nothing.

And, evidently, she’s no longer my doctor either. I was already going to switch to a new doctor, starting in March. I just started on new insurance and, because I just moved, needed to establish a PCP and get a referral in order to continue seeing an endocrinologist. I got an appt set up with the PCP for next Tuesday, but realized today that their hospital affiliation might mean they wouldn’t refer me to my preferred endocrinologist. Spent some time on the phone with them today and, while my current endo is within their same hospital system, they don’t want to refer me to her because she’s so bad (that’s what I’ve been saying!!). He’s agreed to refer me to my doc of choice and to refer me to another one within his hospital system in the meantime. None of that can happen until Tuesday.

He seems really awesome, though. My illness has actually improved a bit already. However, if I get any sign of it getting worse, his practice has weekend sick visits available and 24/7 on-call medical advice/assistance as needed. Yay for helpful doctors!!!!

[PhysChic]

in reply to: Terrified of Graves #1184154

So, I don’t particularly like wasting time and money (tolls, parking, copay) on doctor visits. And I definitely hate doing it when it feels like nothing gets accomplished at the visit, which is how visits with my current endo feel. She still hasn’t responded to my e-mail updating with these lumps!!! grrr….

However, I got impatient over the weekend and e-mailed my new endo (as of March anyway) about the lumps, explained that I can’t get a response from my current endo, and asked for his opinion. This morning, he e-mails back and I get a call from his secretary an hour later setting up an ultrasound and biopsy appt the day after my first appt with him. Seriously, I’ve yet to have an appt with this guy and I already love him!!!!!!!

In the meantime, I managed to get access to my new prescription benefit online account and requested a conversion of my MMI prescription to a 90-day mail order. My endo refused, but allowed a 60-day mail order (which is annoyingly more expensive that the 90-day one). BUT, the order has already shipped, meaning that, once it arrives, I will have more than enough pills to last until the visit with my new endo. I am seriously considering cancelling my next/last appt with my current endo to avoid the hassle of another pointless appt (especially with my ultrasound/biopsy already on the books). And, to top it all off, I discovered that my new endo ALSO specializes in internal medicine so I may be able to assign him as my PCP (at least in the short term) and avoid having to waste the time on a PCP visit just to get a referral to him.

Anyways, all things considered, it’s been a pretty good day . Anyone have any advice on skipping (or not) my next endo visit? FYI- the visit was going to be 4 weeks after my last visit and, if I cancel it, I will have 10 weeks between visits. I just started meds a month ago.

[PhysChic]

in reply to: On ATD two years-plus? #1183768

flora wrote:

Thank you, Shirley, for helping us along this journey – makes it all so much easier to know we are all in this together!

flora

I haven’t been on here all that long, but I already feel the same way. I only hope that, once I manage to get through the tough times (however long they may be), I’ll be able to do the same for others.

[PhysChic]

in reply to: Terrified of Graves #1184153

Liz,

Seriously, if my experience is anything like yours sounds like, it would be an absolute dream!!! I would love to go home that quickly (and I have no intention of staying in the hospital overnight).

Fortunately, the endo I’m switching to specializes in thyroid nodules and is part of a thyroid cancer clinic, so I’m hoping that’s good enough. That and I’m hoping that I can maybe convince my PCP to order the biopsy (and maybe even renew my methimazole prescription while I wait for the new endo) so I can bypass my current endo completely. I guess I could talk to him about whether he thinks I should start with an endo or a surgeon too. That appointment is not until the 26th though .

I know I’ll have lots more of it to come, but waiting sucks.

[PhysChic]

in reply to: Terrified of Graves #1184151

Thanks all. Been a while since I’ve been on here–crazy holidays. Plus, I’ve finally got back to writing my dissertation (after taking last month off because of the crazy health stuff and medical appointments).

I’ve definitely done lots of research. I know that the chances of remission on ATD are low; that’s exactly why I stress so much about having to wait to find out if they even work (and then the possibility that it could come back at any moment anyway). And, in case I didn’t state it before, I have found a new endo that is very well reviewed and has already been very responsive to my initial e-mail contact. Unfortunately, the first appt I could get with him is in March, so I have to keep seeing my crap doctor until them. To make things more complicated, I will be switching to a new health insurance next week and will now be required to get a PCP referral to see an endocrinologist. I just moved here a few months ago and haven’t even seen a PCP yet (I went to an urgent care center for my initial diagnosis). I did find one, but my appt with them is literally 1 day prior to my next appt with my endo. And I’m really annoyed I have to pay a copay for EVERY visit.

Here’s my update:
I had a follow up visit with my endo at the end of December. Every hormone level (except TSH of course) was back in the normal range, so I had my dose lowered to 20mg a day (progress!!). I’ve also been decreased to 25mg atenolol and told to stop it completely in 4 weeks. Most of my symptoms are gone (aside from me emotionally over-reacting to everything); I’m fairly happy that I’ve responded so well to the meds and crossing my fingers I don’t have any issues with liver damage or agranulocytosis.

I’m having trouble scrolling through what I’ve already said, so I’m sorry if I repeat myself with some of this. When I had my uptake scan, it revealed that I have a (palpable) solitary cold nodule on the one side of my thyroid (at my recent visit, my endo’s only comment on it was that it was “definitely larger than 1cm”). My endo has stated that we will probably do a biopsy on it, but only after my hormone levels have normalized (I’m guessing she means the TSH too). In the meantime, I now have one lump on the side of my neck and one on the back, both of which are visible (I can see them in the mirror). I also have one or two just at the base of the thyroid, which aren’t visible but are relatively easy to feel. I’ve looked up diagrams of the location of various lymph nodes and they correspond exactly to where I’m feeling lumps. So, now I’m stressing that these are additional signs that the nodule is cancerous and that it has spread to my lymph nodes and I will need a thyroidectomy with neck dissection. I know the risk of thyroid storm if a thyroidectomy is performed on someone who’s Graves is not under control, but I am the kind of person who absolutely hates uncertainty, so I really wish she’d order a biopsy sooner rather than later. Especially since this all seems to be progressing really quickly (if this is indeed cancer) and it seems like waiting could be potentially a really bad idea.

And, because I’m messed up in the head, I’ve been reading all sorts of stuff on these surgical procedures (and made the mistake of watching one on youtube) and on surgery in general and getting myself all worked up over it (I know “breathe”). I’m working on it–I’m hoping the obsession managed to burn itself out rather than it lasting until I finally get an answer as to what’s going on inside my neck.

[PhysChic]

in reply to: Terrified of Graves #1184146

Two years because I’ll probably be on methimazole for at least 18 months and then, once I’m off it, have to wait and see if I can stay in remission.

I’ve been really annoyed with my current doctor (she brushes me off when I raise concerns over things and takes forever to respond to e-mail/phone call questions). I’ve already found a new doctor, but he can’t see me until March (I’m on a waiting list in case a sooner appt opens up from a cancellation). He seems nice and we’ve already e-mailed back and forth, but he won’t do my monitoring until after he sees me. I’m just so annoyed by this whole thing.

[PhysChic]

in reply to: Terrified of Graves #1184142

Thanks all for the encouraging words. I am feeling a little bit better, though still fairly upset about the whole idea of having to take daily meds (I never take so much as a Tylenol) and trying to stop focusing on this. I do know that I was lucky to be diagnosed so quickly–I have read quite a few stories of people suffering for several months or years before anyone figured it out. Unfortunately, it doesn’t make me feel much better.

No such luck on asking the school for an extension. The job is actually the one who placed me on such a tight timeline and I really don’t want to ask them for an extension as it means sharing my condition with them (I’m a very private person).

I’m definitely impatient when it comes to knowing things. I’m currently struggling to balance my desire to know right away about the nodule with the desire to avoid unnecessary medical testing (I absolutely hate hospitals and am already quite frustrated that my husband convinced me to do the uptake test). I’m also struggling to balance my complete aversion to ending up hypothyroid and my frustration at the unlikeliness that the methimazole will work and that I have to wait 2 years (or more) just to find that out.

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