[Dagny]

#1060708

Hi everyone,
I’ll admit I am not a forum-poster. This is a little awkward for me! I have been searching through posts for days now though, and since it’s a snowy day and I’m feeling fortunate for having found such a friendly and welcoming community on here I thought I would share a (hopefully) short post.

I was diagnosed with Graves’ just before my 23rd birthday last November after dealing with an array of mounting symptoms for about 2 years (since entering into an extremely stressful divorce situation involving abuse and all sorts of fun stuff, which I’m told was probably the trigger for the Graves’ – awesome).
At this point I’m not certain if all of these are Graves’ related, but I suffer from horrible anxiety and emotional episodes, recurrent yeast infections, extreme fatigue, lactose intolerance, scalp psoriasis and most noteably tachycardia with very bad tremors in my arms and legs, which is what brought me in to the doctor for tests in the first place. After a 2.5 month wait with no treatment I finally saw my endocrinologist for the first time last Friday. He seems like a nice enough guy – although I have already told myself if my condition becomes any more complicated (if I were to become pregnant, or if my TED got worse) I will seek a second opinion. It is difficult to find specialists in my area who can see you in a reasonable time frame.

I was relieved to hear about the new research regarding methimazole treatment over an extended period of time rather than jumping straight into the deep end with thyroid removal. To be honest, I’m just feeling so, so overwhelmed and emotional and scared about this whole thing. I don’t even feel that sick. I certainly don’t feel like myself, but to adjust to a lifelong illness takes time. I am a photographer working on building my business, and when the endro told me I have minor TED in both eyes with the right eye being 1 millimeter larger than the left I was sent into a bit of a tailspin. My vision is my life. It is my business as a photographer. Of course most everyone wants to be able to see…but if something were to happen to my eyes, I would lose everything and have to start over from scratch.

I was also told by my endro that I cannot so much as do yoga until my cardiac symptoms improve. I practice yoga to help manage my stress and anxiety, and now I’m told I’m not allowed to break a sweat. I know this isn’t permanent. Things are in flux and will improve eventually. I just want to be 23 right now. I want to run my business and take care of my body and my mind. I have so many questions. I worry about my relationships and the toll my emotional state takes on my partner (who is a wonderful support, to be clear). I worry about my eyes, whether or not I’m getting enough sleep and eating well and living well. I wish I could just stop with all the worrying! I’m so frustrated and brain-foggy.

There is a light at the end of the tunnel. On Saturday I started 10mg methimozole 1x/day (is that low? It seems so low…) and I’m hopeful and glad to know I have options and I will stop feeling so bad so much of the time! Thanks for reading and sharing, I feel less alone in this already having read through the forum the past few days.

[Kimberly]

#1184253

Hello and welcome – sorry to hear about your diagnosis, but I’m glad that you found us. The good news is that the majority of patients respond well to treatment and get on with their lives.

The “Treatment Options” thread in the announcements section of the forum is a great place to start getting up to speed on the three options. All three choices have risks and benefits, so you definitely want to do your research.

Although it’s quite common for Graves’ patients to have some eye involvement, keep in mind that vision loss is *extremely* rare. And if by chance, you do start having serious issues, there is a surgery that can be performed to preserve vision. If you start having difficulty with colors (for example, something that should be red looks more brown or pink), that is a sign to get into a neuro-ophthalmologist ASAP.

On the yoga, maybe you can keep a routine on your own, but focus on more restorative poses, rather than the more strenuous ones? You definitely don’t want to get your heart rate up until your thyroid is under control.

On the dosing, every patient is different. I started at 15 mg/day, and then went from hyper to hypo fairly quickly, so the dose had to be decreased a lot.

Take care – and keep us posted!

[flora]

#1184254

Hi Dagny,

So glad you found your way to us – lots of good information, support and encouragement here, for sure. I’m sorry for the lovely basket of symptoms you’ve been handed, but if you’ve been reading up on us, you’ve probably spotted many kindred spirits in just he same boat as you at first – not a joyride, or a short one, but you’re never alone, and yes, there is a light at the end of that tunnel.

As Kimberly mentioned to me early on my ATD journey, dosing is as much art as science – my doctor started me at 5mg per day, but my stubborn TSH just wouldn’t move (this often happens in the early going). So up the dose went to 15mg – I ended up in hypo land, too. Most of us who choose the ATD trail get used to riding rollercoasters for a while!

You’ll likely be hearing from others who opted for RAI or TT who’ll be sharing their experiences, too – it’s great that we have treatment choices to pick from. Be sure to keep the faith, keep in touch, and let us know when you get the all clear for your yoga. I’m back to ballet class, after doing just barre stretches at home. For now, I just avoid the studio mirrors

All the best,
flora

[snelsen]

#1184255

Glad you found THIS forum. I was not a forum poster, either. But this site helped me stay a lot more sane than I would have been otherwise. Now, it is so nice to be able to tell you that, now that you have your diagnosis, your life will be much better fairly soon with the methimazole, and then you can take your time to think through the other stuff. Soon your heart rate, blood pressure and tremors will resolve. The caution to not exert yourself when your heart rate is so rapid anyway, is very wise. But this will soon change, and you will be back in normal zone. Yoga is great, it is slow (as opposed to cardio stuff) and very relaxing for many folks. So take it easy, then move on with it a part of your world.
Incidentally, I know you are established with an endo now, but the next time if you have as many symptoms as you had, call, tell’em what your heart rate and BP are, and do what you need to to do to get seen. They allow space in their books for these situations. Also, generally, anyone has to wait a long time for a new patient appt, cause they take a lot longer to get to know you at all. After that, you won’t have this kind of wait. AND, if you decided to get a 2nd opinion at any time, just do it. Docs don’t care.
Regarding your eyes, regarding Graves, I am so glad that with your diagnosis everything will fall into place much more easily and safely for you. And, you are right. this is not the ideal time to get pregnant

I have big TED eye issues, lots f’em. Most folks are not as severe as I was. All better now, with minor things like I need sunglasses in bright sunlight. Vision is fine. Step at a time, and so so so glad you decided to post, and even glad it snowed so you stayed home to decide to do it.
Shirley in Seattle

[Dagny]

#1184256

Thank you all for reading and responding! I hope one day I can be as helpful and knowledgeable to newbies on here as you have been

Kimberly, I think I will have to make it a priority to find a slow and restorative yoga routine for the time being. I have switched to simple meditation since last week but it is just not enough, I need to move, at least to stretch! I was surprised at first to read that you went hypo on methimazole – though thinking about it, it makes sense that it could over-suppress the thyroid, is that right? That seems like something my endro should have brought up with me, which of course has me worrying (I am getting really good at this anxious worrying thing!) that it’s a red flag I should find someone else.
It is a relief to hear that the eye problems are solve-able, so I’m going to let myself stop worrying about that one!

I am so appreciative of the general support and experiences you have all shared with me. I will definitely be keeping in mind the quick and many changes I will go through while we figure out the best course of action for my needs, and keep posting updates here.

One question I can’t seem to find a definitive answer on – I am currently working with a few families nannying, very part time. They are all under 7 years old, so of course they are all always sick with a cold or some other virus. I’m definitely getting sick easier than I used to, and worse than I used to, and I’m just wondering if I should seriously consider backing away from the nannying for the time being. I’ve read about the methimazole affecting my ability to fight off illness (but my endro didn’t mention this… Another red flag?) but I don’t know if that’s just in extreme cases or higher doses.

Thanks again everyone
Dagny

[Kimberly]

#1184257

Hello – yes, you can go hypo on anti-thyroid meds if your dose is too high. You need to find the “Goldilocks” dose that will keep your levels normal and stable – and this could take some adjustments over time. You will feel it if you start to go hypo. Every patient is different, but symptoms can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

I suspect that every patient is different in terms of whether they tend to get sick more with other illnesses. I actually had *fewer* colds after I got diagnosed, perhaps because I started being super careful about washing my hands and trying to use a tissue or something if I had to touch common surfaces. However, if you get a sore throat with fever, that is a potential side effect of the meds, so call your doctor ASAP if this happens. This is rare, but it’s always best to err on the side of caution!

[snelsen]

#1184258

Hi Dagny,
Yep. Figuring out the methimazole med can be tricky. If you develop hypo symptoms, which are overwhelming fatigue, possible surprise weight gain, plus all that Kimberly mentioned, feel sluggish, blah blah, it could mean you are getting too much ATD for YOU.
Sooner or later you get to that “sweet spot” and things and you feel kinda normal.

Re work-If you enjoy it, and need the pay, think about what YOU would like to do. Being bored is also hard on us.

Yoga-just do yoga that is gentle. As Kimberly mentioned, don’t do things that greatly increase your heart rate right now. It’s already increased

Re you question about infection, colds, etc. there are a couple VERY RARE side effects with the ATD. That is why you have labs drawn. I suggest you go along and live your world the way it is, with the caveat that you follow Kimberly’s advice,and do what you probably would do anyway. If you get a fever, know you are sick, get a complete lab panel (they always do more than thyroid studies at this time, and they should be doing a CBC, i.e. checking white and red blood cells. Please read this accurate reference by Mayo clinic. It is a matter of being informed, not to scare you. And a perfect conversation to have with your doc, asking about the very very rare occurrences that can happen when on ATD (anti thyroid drugs)

Here ya go!

http://www.mayoclinic.org/drugs-supplements/methimazole-oral-route/precautions/drg-20073004

[Dagny]

#1184259

Thank you all again for your help and support! It’s been a rough couple of weeks for me adjusting to the methimazole. I got sick…again…these kids are always sick! Which hasn’t helped. Last Friday I felt awful. I had a horrible cough and congestion on top of dealing with continued fatigue from the drugs. I was convinced I had gone hypo. I called my endro, did bloodwork…I got a phone call yesterday, my thyroid is NORMAL! I was so surprised, I think my dr was too… He thinks the fatigue is related to me getting so sick 3 times the past 1.5 months. I suspect my being so out of shape right now from all the movie-marathon sick parties I’ve been having is also contributing.
We’re tapering off the propranolol now, I can ease back into exercise. I didn’t think this would happen so quickly, now I’m just hoping it stays this way. I am prioritizing my health and keeping my stress levels down more than ever before. Going to try and enjoy the relief this brings, as long as it lasts

[Kimberly]

#1184260

Hello – If you are reducing the propranolol, ask your doc if you should be reducing the methimazole as well. It can take some tweaking to find the right dose that will *keep* you in the normal range once you get there!

[letsgomets2016andbeyond]

#1184261

Sorry for your troubles.

For exercise you cannot beat a good ole fashioned walk, even if it is at a leisurely pace.

[Author]

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