[PhysChic]

#1060688

I just received my diagnosis two days ago and I’m having a terrible time with it. I just finished my PhD, though I still have to finish writing my dissertation and finish up all graduation requirements in the next few months. I have already started my new full-time job and moved half-way across the country for it a few months ago. Everything was fine until I noticed, right before Thanksgiving, that I was eating way more than normal–my metabolism has always been pathetically low and, here I was, eating four FULL meals a day and either staying the same weight or even losing. Then, the following Sunday, I couldn’t fall asleep because my heart was racing. By Wednesday, my heart spent all day racing (24 hours a day at least 100bpm), so I went to a doctor, who told me I probably had hyperthyroidism and took some blood. I’d had a baby 8 months ago, so I was really hoping it was thyroiditis, but no luck. My uptake test was 71%, all hormone levels were WAY out of normal range, and I have a cold nodule on one side that they said they need to watch (not sure why we’re not doing a biopsy right away, but I haven’t had my follow-up appt yet to ask).

I know this is a stress related thing and my job is high stress, on top of having to finish graduating soon. I’m absolutely terrified of side effects of the meds (I’m on 30mg methimazole and 50mg beta-blockers twice a day), I’m terrified of them not working and me having to choose RAI or surgery. I’m terrified that the nodule is cancerous. I know the chances are small, but I’ve lost my faith in that because the chances of me getting Graves were small too. I’m terrified I won’t be able to manage the stress of my job and of graduating–I’ve already had three full-blown panic attacks and I’m having trouble even focusing while I’m at work. I’m terrified that this could all get worse or that I’ll suffer mental deficits and not be able to do my job and it will never get better. I’m terrified of developing problems with my eyes.

I’m angry that the medical community doesn’t seem to be taking this seriously. That they seem contented to just manage the symptoms and let us all suffer instead of working to try to actually understand this and maybe even develop a cure.

I don’t know how to live with this. I know you all have and that it “can be done” but I don’t know how to do it.

I’m sorry I am continuing to panic about this. I’m just hoping I can find some support because I’m terrified I’m losing myself to this.

[Kimberly]

#1184138

Hello and welcome! Getting a diagnosis is definitely overwhelming at first, but the good news is that it seems like your docs figured out fairly quickly what was wrong.

The more side effects with antithyroid meds are rare – you just need to pay close attention to the prescription info and report any of the suspicious symptoms listed to your doctor ASAP. We also have regular posters here who have done fine with RAI or surgery. The important thing is to do your research up front and understand all the risks and benefits.

Although much is not well understood about Graves’, stress can definitely be a trigger. If there is anything that you can do right now to reduce that burden, that will definitely be helpful as you go through the healing process. Can you extend the timetable for your dissertation? (Maybe even talk to a school counselor about getting an Individualized Education Plan – not sure if that can be done at the PhD level, but worth a try!). Are there other responsibilities that you can postpone or cut out completely?

Definitely ask about the nodule at your next appointment – if it is very small, the doctors might take a “watch and wait” approach rather than doing a biopsy now.

Take care – and please keep us posted!

[snelsen]

#1184139

Oh my. I am not sure at this point if I tell you that I was a crazy person, that I could have written your letter below. I had a small baby, working full time in a hospital, with a husband in med school.

You are very, very lucky, to go to a doc who recognized this, did all the labs the first time, and you did not encounter someone think of Graves’ right away. Getting a quick diagnosis is a gift.

Clearly you have done some research on all of this. But when you are hyper, we really are a little bit crazy, with all that you describe below. After a few days, as you take methimazole, you will not be so hyper, and as that evolves, you will be able to look at this situation a little bit more objectively. The methimazole will work. You need the beta blocker right now, cause hearts are not fond of beating that fast. When you are less hyper, your heart rate will most likely slow down. And, work will be be better. The sooner you have a plan, I imagine you will feel that something is being done, and there is an end to this. As far as not being yourself, and being you again, this is true. You will get back to baseline.

I understand your fears, but in just a few days, you will see that methimazole is your friend, and be darn glad someone developed it. Incidentally, I have no family history. Not sure if you do or not.

What helped me, was that even many decades ago, when I was diagnosed with Graves’ at age 24, I knew (from reading) that I would be better. But I really did not believe it. I was angry, irritable, ate like a pig, all the time, and lost weight. People did not understand, and I did not really understand either. Graves’ and feeling like this was for OTHER people. NOT me. I was would up so tight, not fun to work with, but quite a plus for my co-workers, for I wanted to do all the work. My work, their work, everyone’s work. I was awake most of the night.

I also had a nodule. Back then, in the 1950’s there was no internet. I read Cecil’s Medicine. Since you are really worried about it that is a reason to ask for a fine needle biopsy, you will have more information. I think the unknown is the hardest for me. But some people don’t want to know anything. I suspect you are not one of those people!

Since I am one of those instant gratification people in certain instances, I could hardly WAIT to have my thyroidectomy. It was a definitive act, and removed what was giving me this problem. I was impatient and unreasonable about having to wait until I was less hyper. Back when I had my surgery, the method was to leave a tiny bit of thyroid gland, with the anticipation that would be just the right amount for the body. This worked for me for over 30 years. Then I became a little bit hypo, tired sluggish, gained weight, felt like a slug all the time. IT was time for thyroid replacement. Again, how lucky we are that thyroid replacement with levothyroxine can be done! I have been on Synthroid for years. All good.

In passing, I want to mention that i was breast feeding, never did stop. My neighbor brought my baby to the hospital for me to feed, and I spent the rest of my time expressing milk by hand. No pumps then.

If you have a prior history and diagnosis of panic attacks, I presume your care provider knows this. There are some choices of meds to take when you are in a full blown panic attack. Otherwise, probably your anxiety is understandably about this new diagnosis and how you feel. It will be better.

I do not know of anyone who developed mental issues caused by Graves’.

Your docs are doing the right thing. Managing the symptoms is what needs to be done. We sure has heck don’t want to continue to feel like that.

As Kimberly says, some people choose RAI, some choose surgery, and now, some people also choose to stay on methimazole. We are all on the forum.
Choice is dictated by personal choice, plus if you decide to have a thyroidectomy, you need to have access to a skilled surgeon, who does a lot of them. My understanding is 50 or more a year is a good measuring stick.

Please continue to write. Lots of people here do understand what you’re going through, and may have thoughts and suggestions that I have not mentioned.

Shirley

[Liz1967]

#1184140

You are anxious partly because of your out of whack thyroid levels. This will settle down. Yes, it is scary but you will get through it. The methimazole works to get your T4 down. I chose total thyroidectomy (which was definitely NOT a terrifying experience) and I feel completely normal. I had the most severe eye disease and even that is mostly treatable with corrective surgery. There is a lot of research being done but because this disease affects such a small population, it isn’t as well funded as, for instance, breast cancer. Hyperthyroidism is always curable with thyroidectomy (99.5%) if the methimazole causes problems and lots of people are taking replacement hormone (synthroid) for hypothyroid or after thyroid cancer thyroidectomy and leading totally normal lives (like Brooke Burke-charvet and Sofia Vergara). This is not a fatal disease, except in the very rare instance of thyroid storm. The eye disease is pretty rare and if I didn’t have that, I would forget I have Graves. Once the methimazole starts working, you will settle down and can then decide what you want to do. There are options. As for thyroid cancer, it is very slow growing and treatable, you do not have to be in a big hurry to find out about that. No one wants to do any kind of surgery until your levels are down. You will feel better fairly quickly. You certainly can return to your normal life. I felt like you do, having never been sick a day in my life until the Graves diagnosis. It is an adjustment but you do not have to feel unwell. It is just a matter of finding which treatment works for you. Hope this helps.

[terppsi]

#1184141

Welcome PhysChic!

As others said, I think your anxiety is partly due to your hormones being out of whack. But after a few weeks on methimazole that should get better.
Actually, in my case, I was so relieved it was Grves, I thought I had a really serious heart problem and a friend of mine had recently died of a heart attack.
And since I was taking propanolol as a betablocker, that really helped with the anxiety.
One of the toughest things still, 2 years after diagnosis, is to accept I have to pace myself.
As for the side effects of methimazole, I get labs every 3 months to check for liver failure or decreased platelet counts and so far so good. And my stepmother has been on methimazole for 17 years with no side effect. I heve a fine needle aspiration every year to check my nodules (this time the doctor who was doing the scan tod me immediatly the nodules did not look cancerous so that was a relief). Still buliding up courage to have a thiroidectomy as RAI is not recommended in my case.
This forum helped me a lot, made me feel less lonely when I had moments of despair.
Good luck on your journey!

[PhysChic]

#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.

[flora]

#1184143

Hi PC –

Gee, you sound just like almost all of us did, when each of us got our GD diagnosis – scared, and wondering which way to turn. Well, you found out really quickly what the heck it was, and you found us – so you’re doing great so far!

As others have mentioned, much of this is an agonizing waiting game, as we count the weeks till the meds kick in (for me, it was 10 long weeks before the sun came out, but take heart, because for many/most here, relief came a whole lot sooner). But it’s worth the wait – things will settle. Feel free to “click” on my name, or search for my posts under “flora” to read about my journey so far – I was pretty much a wreck at first, but the great support and encouragement you find here will be a big help to you, just as it has been to me.

So welcome to the Graves Gang, as one of our favourite posters calls us, and keep us posted.

flora

[Liz1967]

#1184144

Not sure why you would have to wait two years to see if methimazole will bring remission. I had my thyroidectomy after 7 months, it was a choice I made based on a lot of research and medical professional advice. I wasn’t willing to mess around for years, patience is not a virtue I possess! I wanted to feel normal and get on with my life. It has worked for me but a lot of people are happy taking methimazole every day rather than Synthroid so you can choose that route if you feel it is best for you. For me, I take my Synthroid every morning and get labs every 6 months. It is the only medication I take. I have no hyper or hypo symptoms, follow no special diet, take no supplements, have no activity restrictions, am normal weight, etc. I have to keep my Synthroid on the coffee pot or I would forget to take it in the morning entirely, that is how much I think about my thyroid hormone levels. I understand your impatience. I wasn’t willing to feel bad or not myself for any length of time.

[snelsen]

#1184145

Hey Physchic!
Where did this two years come from?? You don’t have to wait two years for anything. My experience pretty much reflect the experience of Liz. Wanted to get this DONE, get it behind me, and MOVE ON! Sooner the better.
Kimberly has had great success with methimazole over several years, so you can ask her about that. Keep writing. the methimazole will kick in soon, and it really does make a difference in how you view stuff.
Remember, a pill a day puts you back in the normal population, and you are “you ” again.

None of us are disregarding any of your apprehensions or fears. Certainly none of wanted to mess around with this Graves’s stuff. But, I am pragmatic, not much of a person into denial. “What is, is! Get on with it!” is more my thinking.

Of interest, I have had breast cancer twice with no family history, two mastectomies, radiation and chemo because of the degree of cancer the 2nd time, which developed in 8 weeks. It happens! Carpe diem, whatever junk is handed to us! I am so grateful for all the interventions I have had.

[PhysChic]

#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.

[Liz1967]

#1184147

Find a new doctor. There is no guarantee you will achieve remission in 2 years or 5 years or 10 years. Less than 50% achieve remission, and of those, lots relapse. You might consider a consult with an ENT surgeon who does thyroidectomies for Graves.If you are here in the US, and your insurance allows it, maybe you could seek an endocrinology consult at a teaching hospital somewhere within a reasonable distance of your home. In the meantime, do some research. PubMed is a good start online where you can read abstracts of peer reviewed journal articles about latest Graves research and treatment. I made the mistake of trusting my endo when I first was diagnosed. I bypassed her entirely and saw a surgeon. Up to you, but I would for sure look into all options. Endocrinologists want to treat with drugs, surgeons want to operate, radiologists go for RAI. It is up to you to consult all of them if necessary and make best choice for yourself.

[snelsen]

#1184148

Agree with Liz. If you have been told you will eventually have a remission, that troubles me. All her advice is excellent.
shirley

[goldenwillow]

#1184149

Such wonderful posts from folks that know. So grateful you have this at the beginning stages of your diagnosis.

8 months postpartum? Take a breather Mama. Easier said than done, I know. You sound like a very motivated person What a year you have had! I find when my symptoms are overwhelming, taking time to breathe is key, actually excusing myself from a situation. It took me a long time to give myself permission to do so. It causes body fatigue/fibro flares When I do not. Just not worth it to me anymore. When my son was that small, watching him breathe while he slept on me helped calm me Beautiful memory.

[PhysChic]

#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.

[Liz1967]

#1184152

See a surgeon. They are the ones that ultimately treat thyroid cancer anyway. My surgeon did the only thyroid ultrasound I had, endo certainly did not. My TSH was not recordable at time of surgery and methimazole was increased in weeks prior to surgery to lower FT3 and FT4, so I would not count on TSH getting into normal range soon. My thyroidectomy was a piece of cake. Less than an hour in operating room, home two hours later. Only problem I had was fatigue next day from general anesthesia. So don’t fear the surgery itself. By the way, my surgeon prescribed my methimazole dose and ordered labs prior to surgery and managed my synthroid dose for first six months after surgery.

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