[NZErin]

#1017969

Hi all,

Wonder if anyone can provide some ideas for me and why my graves’ seems to have suddenly become a whole lot worse despite still being on medication.

I’m 19 years old and was diagnosed in March of last year. I also have Cerebral Palsy (neurological condition from birth which means I use a wheelchair/crutches), so I think I put a lot of my symptoms down to that since it is a lot of strain and hard work physically functioning with CP sometimes. Anyway, my GP picked it up because my eyes were red and watery and I had a very fast pulse and was very out of breath. Then she did tests and the results were a bit shocking – levels 4x higher than normal range. I was referred urgently to a specialist, who put me on carbimazole (six tablets/day) and a beta blocker. Things went fine. I didn’t feel much different but then again, I didn’t feel so bad (I thought) to begin with, so it was fine. I did notice that my heart rate went down, my eyes cleared up, and the palpitations stopped, so that was something and every time I went back to the specialist, I was feeling quite well and she decreased my dose and stopped the beta blocker.

I’m now on 2 tablets of carbimazole per day and last appointment, she discussed the possibility of RAI to get me off the medication, but I haven’t seen her since (am actually due to see her tomorrow). Lately though, I feel things have progressed a significantly and I feel a whole lot worse (for some reason?) than I’ve ever felt, with a lot more symptoms, the most concerning of the two being anxiety and lack of concentration. My eyes seem to have become bad again (red, sore, even getting "tension headaches" above them (?) and I’m occasionally getting palpitations as well. I also feel incredibly tired and ‘out of it’ most of the time and my memory is usually really good, but my brain feels so fogged up lately. I guess I just don’t understand why this is all happening now, especially since I’m still on medication. Also, I had blood tests last week and the results apparently are fine so I really don’t understand why I’m feeling like this and I’m getting more and more anxious that it’s really just all in my head…

The last few months have been incredibly stressful as my city suffered a devastating earthquake (6.3, killed 181 people and caused billions’ of dollars worth of damage and still getting aftershocks) which actually caused my specialist to move as her building was destroyed, so maybe it has something to do with that, but I do really think there is also something more and that it has to be something to do with Graves’. I just feel so frustrated and crazy lately, like the anxiety is so bad sometimes and I can’t concentrate in class at all, which is a real problem as I have exams coming up and am studying law (so a pretty reading intense subject…)

I hope my specialist has something useful to say but has anyone experienced similar? I.e. Did the treatment start off well but then your suddenly became a lot worse in the course of it for some reason? I feel like I may have to go on anxiety meds or another pill or something.

[Bobbi]

#1061916

Hi, and welcome.

Inasmuch as our disease is caused by antibody action, and the antithyroid drugs do NOT affect those antibodies, if our antibody levels rise (as they are known to do from time to time — especially when we are encountering major life stress situations) our symptoms will worsen. So, the short answer is that it’s possible your body is producing more antibodies right now, and that you would, therefore, need to adjust the carbamazole dose to regain normal levels of hormone. Antibody levels are known to rise and fall for no good reason. But stress is known to cause an immune system response, so they typically do rise when we are under major stress.

It is also possible that what you feel is stress pure and simple. Although it’s likely not that simple. But it could be. Even folks without GD get anxious, jittery, etc. when confronted with massive natural disasters. The good news, I guess, is that a blood test will show if your thyroid levels have gone wonky again (because of the antibodies). After that, it might be a simple fix to get those levels back to "right" again for a while.

I do wish you all in Christchurch a speedy recovery from the earthquake. If that’s possible. I lived through a natural disaster myself long ago (Hurricane Andrew in Florida), and it’s awful when everything around is turned to rubble.

[NZErin]

#1061917

Thanks Bobbi! I appreciate the information and the well-wishes. We had a 5.3 aftershock this morning at 3am (second biggest since quake in February). It felt really bad and definitely wasn’t good for my anxiety levels!

Seeing the specialist this afternoon so will see what she has to say. Somewhat nervous as normally I don’t have many symptoms to report but different this time. I guess she will actually have her first lot of real work to do with me.

If my T3/4 levels are in normal range, could I still be producing more antibodies than I have been because of stress (or whatever the cause) etc.? Just wondering if that’s a separate blood test or if it comes under the same one.

Thanks again! I do hope the earthquake-related stuff all stops soon. The latest aftershock really did catch me off-guard as we haven’t had any that bad for months. But I guess we just have to roll with it for now. ” title=”Smile” />

[Kimberly]

#1061918

Hello – I haven’t seen any specific studies on this, but from personal experience, my thyroid hormone levels head into hypER territory every single time I am dealing with an extremely successful situation. A tweak of my methimzaole dose usually beings things back under control.

Best of luck to you as your town goes through the rebuilding process.

[lammie]

#1061919

Hi there

I got GD at 25 and I’m 27 now and basically I was kind of ok but my anxiety came out more last year and I was also taking 2 tablets a day. Anyways I decided to do RAI in Jan this year and for me my anxiety went worse (due to the dumping stage) but I definitely know that when I had finally headed towards Hypo stage, my anxiety was gone. However, my anxiety is back because the thyroid pill I took for a month got me back to overactive so now my dosage has been reduced. So anyways, going through this whole experience, I thought it was all in my head as well and I would freak out over things I never used to. Like seriously, why would I be scared of going to a meeting at work yet there I was sitting there freaking out inside and had to run out twice cause I was really anxious! And I thought – well this never used to happen to me so what is going on because I’m taking pills etc. But that’s because I was always Hyper so each time my levels have gone down, my anxiety did too.

I’m still at the waiting stage for my levels to go normal which is very hard to deal with but I know I’m really close. Basically, I’m not saying that your anxiety is only there cause you’re still Hyper (because any type of trauma will bring that out which you just recently had to deal with) but if you know inside that in normal situations you wouldn’t really get anxious but now you do, then I think it’s because you’re still Hyper. And for you to have gone from 6 pills to 2 days could also be a difference. Hope this helps!

[snelsen]

#1061920

As has been suggested in another couple posts, perhaps you are becoming hyPER again since your some of the symptoms are back. I am thinking that as your carbamazole was reduced, that you slowly (or rapidly!) became hyper again. I hope your labs reflect that during your visit to your doctor today. And even if they don’t she may increase the dose again.
My own experience is that when I was on ADT’s after first being diagnosed with Graves’, every time they reduced the dose at all, I flipped right back into being hyper.

I am so so sorry for the stress you have experienced with the earthquake. Nobody can understand that unless they have been through it. That is super stress. How did your appointment go today?

Re antibodies-from what I know, the antibody level can be helpful in determining the cause of hyperthyroidism, in some cases. But the antibody level is not used by the endocrinologists to determine treatment dose at any stage. I think Kimberly addressed this topic.
It’s the thyroid labs plus your own report of symptoms, plus heart rate and blood pressure.
Shirley

[NZErin]

#1061921

Thank you all so much for your kind words, information and reassurance.

My doctor’s appointment today went okay. She was indeed surprised I complained of symptoms as I have never really complained of many before. My labs were "the best they’ve ever been" which is good in a way but maybe if they were high, I would have felt better about it because at least it would have explained more. Anyway, she did tweak my dose a little and said that she would put off the possibility of RAI for now because my TED has come back slightly. I was relieved about that since to be honest RAI and what it can do sounds scary. I also told her about the anxiety and she didn’t really say that it was directly related to my thyroid, but apparently my pulse was super fast, so she gave me an anti-anxiety drug to try (can’t remember what it’s called right now) so I am eager to see if it helps, and she also reassured me that I was not the only one struggling considering the very stressful circumstances we’re living in. I’ll have blood tests in six weeks time and will see her again in about 4 months (where she will be in yet another building since her current location is temp).

I think my biggest problem is really that I am way too hard on myself most of the time. When I think about it, living with a moderate physical disability is hard enough. CP affects my whole body. All my muscles, as well as my co ordination, spacial perception and reflexes (since it is all to do with the brain) and so even that can go through (unpredictable) stages where it is harder than usual to live with and really does take a lot of effort to overcome. Then add the unpredictability of Graves’ and the major stress living in a place which has suffered two major earthquakes over the last 8 months (we had a 7.1 near here in September) with continuing aftershocks and an environment that is even less accessible to a wheelchair-user than usual (roads and footpaths cracked and uneven, businesses moved into inaccessible buildings etc). Then add the stress of being a university student when half the campus is still closed after being completely closed for 3 weeks after the quake (had only just started, the quake struck on the second day of the new year) and the timetable is constantly changing in order to fit everything/everyone in and it is no wonder I am not feeling the best.

I received my first essay grade for the year the other day and when I saw it was a B+, I was so annoyed with myself, but I really shouldn’t be. I should be really proud. I never want to seem less able than anyone, if anything I want to seem more able, but there is only so hard one can try especially with everything going on. I need to learn to give myself a lot more credit than I do, so if anything, that’s what I’m going to try and do. I’m gonna just let myself feel crappy sometimes, just gonna let myself rest sometimes, instead of beating myself up about it, because ANYONE would be super stressed if they had what I have going on.

Anyhow, little pep talk to myself there! Thanks again for your support. Look forward to being a part of this community. x

[mamabear]

#1061922

Welcome!
I just read your thread and wanted to say that your last post said that will have blood work in 6 weeks and see dr. in 4 months. I think that you need to speak with dr. about make an appt sooner so that nothing gets "forgotten". Your levels aren’t stable, you are having issues with anxiety which they do not know if it’s from GD or not so monitoring you a bit closer would be better. I understand that the dr. will see the blood work in 6 weeks but that isn’t looking at you personally and seeing how you are doing. If you can afford the extra co pay, I’d make sure to schedule an appt for around the time you have your bloods done, continue to keep the 4month appt as well. At least you have the appt and can cancel it if you dont need it.

[NZErin]

#1061923

Thanks mamabear. I’ll look into that. I actually felt quite good yesterday and the day before re anxiety/other symptoms but I have felt quite bad today (very anxious/edgy etc) and I didn’t sleep well last night. It’s so frustrating cos I get all optimistic when I have a good day and then the next day is bad. It’s such a rollercoaster. I just want some stability, but not even the ground is stable in this city Gotta try be patient I guess.

Irony is that we were discussing anxiety in my sociology class today and I wanted to contribute to the discussion but was feeling too anxious to do so! Ah, Graves…

[Bobbi]

#1061924

Having the earth move — literally — all the time is nerve wracking even without the additional aspect of having a disease. Some friends in the western part of the country (USA) experienced a month of very minor earth tremors a year or so ago, and they were wrecks, nerve-wise. This may be another B+ moment you need to think about in a new way. Instead of "I should be handling this better," it would be something like "I am nervous/anxious but who isn’t, and all things considered I’m doing really well!!"

I hope so any way.

[Author]

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