[Khadijah]

in reply to: Graves and coping with life #1175794

Sorry, didn’t mean to hijack. Karen- medication may need to be adjusted. I too am looking for a job and I am scared of actually finding one in case I have a flare up. I know it will come eventually.

Vanilla sky-I read your other post and you said you were on 10mg of tapazolaife, obviously I am not a doctor but I am on 30mg and it has made a difference. 10mg seems terribly low. Have you always been on 10mg or at one point were you on a higher dose.

Regarding health insurance I think Obamacare kicks in 2014. So, at worst you would cover yourself for a year? Check ahead how it is going to work so you are ready. It may be cheaper to pay out of pocket for Meds and doctor visits. If they know you are paying direct they usually give reduced rates. And you can negotiate directly with the drug manufacturer. Just try to get the big stuff done while insured. So, yes maybe doing RAI would not be a bad idea?

I meant to add despite the graves fog anxiety etc. you are thinking proactively and that is good.

Hang in there you can beat this thing!

[Khadijah]

in reply to: How well can I feel with this disease? #1175722

Personally, if I get to the point where there is too much adjusting of medication that it interferes with my well being and I have done RAI I will take the next step and do the surgery. I guess once you have the surgery and hypo you can have dosing issues with the synthroid but from my understanding it is not so drastic? Also, it is possible to have had your thyroid grow back after RAI or may need a second round?

I don’t think you should accept this as your fate. I would fight until you are in a good place. That is why this is such a supportive site we are all fighting in our own way. I changed my view from surgery to Meds and I am giving the Meds a chance for now and I am having good results. But, I am open to whatever it takes to be in a good place. This graves sucks when you are in a bad place.

[Khadijah]

in reply to: Anxiety Medications, which are best? #1175910

My personal opinion (confirmed by a friend who was a doctor at health and human services) is unless you are bipolar etc. anti depressants tend to be overused and not always necessary especially since they pretty much all have bad side effects. I highly recommend finding a good class or DVD for doing some Pilates, yoga, or meditation. The endorphins from meditating and exercise are real! It does take a little practice but not too much of a learning curve. However, if you are in the hyper phase it will take longer because obviously you aren’t as stable as you could be. But, don’t despair you will be better soon. Sounds like it’s the hyper talking. Remember how anxious I was just a few weeks ago.

[Khadijah]

in reply to: Graves’ and anxiety. husband making me sick? #1175716

Vanilla sky- I understand your frustration with the husband. He may have done that if your doctor is out of network and he wanted to do it before the year is over so not to deal with the deductible for a while?

I can’t remember what your situation is are you on Meds hoping for remission? Coming out of remission? Do you have issues with toxicity? If you can handle a higher dose of the methmizole that might work well. I never went on the beta blockers despite the heart palpitations because the methmizole (30mg) did the trick. I felt better after just a few days.

Hard to believe how good I am feeling now. I even started dancing again. But, part of me is waiting for “the other shoe to drop…” I definitely remember how crazed I felt when this all began.

Also, don’t give up on finding a better doctor. It does make a huge difference having someone understanding and capable. Take your time and space out the doctor visits with what is comfortable for you. Going to doctors is no fun.

Wishing you the best and good luck!

[Khadijah]

in reply to: Methimazole stopped working #1175303

This is heartbreaking, I am terribly sorry. I think you may need to talk to another doctor as well, just for peace of mind. Where do you live? I’ll ask my endo (he does lots of research) who he thinks is the best doctor for children. Maybe at least you can do a phone consult?

Have you discussed other options, I would imagine obviously on a six year old precautions would have to be made.

But, my first thought is that if there is no toxicity maybe a higher dose for a while will help.

I’m praying for you and your son.

[Khadijah]

in reply to: Happy Thanksgiving #1175279

Thanks! You too!

And I’m thankful for this forum and everyone on here!!

[Khadijah]

in reply to: Beta blocker question? #1175290

Thanks, Stacy. It was racing like crazy and I was a complete wreck before starting treatment but after being on the methmizole for only a week I started to feel much better. By the time I saw a second endo who prescribed the bb I was on methmizole for 2/12 weeks and had even less symptoms. So, that is why I’m wondering if I should even bother. I believe the bb has more side effects ( weight gain, sluggishness, tired etc.) than what would be a minimal benefit?

[Khadijah]

in reply to: What are your experiences with Methimazole? #1175264

I’ve been on methmizole for about three weeks, 30mg. So far, so good. My symptoms have gone away. I did blood work including liver panel for my baseline and will do another one in six weeks when I go back to the doctor.

[Khadijah]

in reply to: Endo appointment with a new doctor, WOW!!! #1175153

I’ll give it a try for now because I’m not working and if I feel bad I can rest during the day, but, having to go to the doctor every couple of months or even ever four would make me nits, not to mention the blood work ever couple of months. Ugh, this is exactly what I was afraid of. I have a five year old so keeping up with him when I’m sick is really hard.

But, thanks for everyone’s perspective, this is an amazing resource!

[Khadijah]

in reply to: Endo appointment with a new doctor, WOW!!! #1175148

Kimberly- thanks for the link, very interesting. I am on a high dose 30mg daily. so, that is why I’m afraid of a reaction.

As Sue mentioned with all the adjustments to the medication, I don’t want to be experiencing weeks of feeling bad because I need to adjust my medication frequently, as well as wait for it to kick in.

I am looking for a job and if I start a new job I will need my brain to be as sharp as possible I do a lot of data analysis, which can be hard enough when I’m feeling good.

Also, for the dancing I need to be steadily healthy, are the adjustments just at the beginning and eventually one stays on a stable dose. I mean if one is on it for a long time you are satisfied with the results? I would imagine if every couple of months you go really hyper or hypo that would be rather unpleasant?

[Khadijah]

in reply to: Living with Graves since June 2003 #1175138

I would try to find another doctor. If you have symptoms then something must be out wack whether it’s thyroid or something else. I had a much better doctor second time around. Maybe look up a holistic practitioner who is a doctor. They may be more understanding even if you can only go for one visit. Good luck. Keep us posted on how you are feeling.

[Khadijah]

in reply to: Endo appointment with a new doctor, WOW!!! #1175145

PolishTym- thanks. Yes, I fear that mine will not go in remission but because I am feeling better I am not complaining at the moment. What made you decide to do surgery? Did the meds not work anymore, toxicity, felt bad too buch back and forth with readings? Thanks for your insight!

Alyianna-I feel like since I’m feeling better with the methmizole I don’t need the beta blockers? Does it help with the brain fog. I have bad muscle atrophy for lack of a better description, the doctor said I can exercise while on the beta blockers. Not sure what the bb is for? I don’t have palpitations or high blood pressure anymore. Thanks!

I feel like a crazed junkie looking for the best fix!

[Khadijah]

in reply to: * Stop Methimazole :| * #1174474

This sounds plausible. I don’t have personal experience yet but today at my endo appointment ( a second opinion doctor but much better so from now on my endo) he said that I can expect to go off and back on in the process for achieving remission, including loweng the dosage. He assured me that the methmizole is not as toxic as the other anti-thyroid meds so you can stay on it much longer. I would like to hear more on that from people who have eveni on for a long time.

[Khadijah]

in reply to: Husband’s definition of support… #1174920

I guess this happens more than I realized. I think people are use to you being strong and taking care of them and everything else, so when you have a serious illness they can’t handle it because they are more dependant on you. My husband goes nuts when I am sick. By the time he realizes how sick I am I am already feeling better and don’t need the delayed help.

I asked my husband to go to my endo today and this time he went but he made me ask the doctor why my libido is so low. And the doctor (second opinion but my first choice) is anti-surgery. And since I had accepted my fate and was on the road to surgery my husband loved that the doctor “shot me down” about surgery. Maybe I should not have brought him! Ugh.

[Khadijah]

in reply to: Went to the endo today… #1175046

Thanks and yes this forum is great! I have only been on meds a few days but I definitely am felling better wi the ATDs. Not better as in clear headed etc. but I don’t wake-up everyday worse than the day before. I live in the Washington DC area so we have lots of good surgeons around in MD VA or DC. So, although the first dr (VA) does only thyroidectomies I know there are some other well known doctors at Johns Hopkins (MD) that only do thyroidectomies. I’m hoping to meet with a couple more surgeons in the meantime.

[Author]

Posts