[hwalter]

#1019612

I have been w GD for about 4 months now. My GP has me taking 100mg of PTU 3 times a day and 40mg of BB 2/day. In Feb I had my uterus and cervix removed due to a large amount of scar tissue built up from previous csections. Durning my recovery time I had a chance to really "listen" to my body. I began to notice that taking my meds made me feel worse. Therefore, I chose to stop taking them and felt much better. After researching some, I began to realize that it might be best for me to continue taking my meds. My biggest issues right now are my heart palps which seem to be to a stronger degree when I take my meds. My heart beats much faster, much harder, and for much longer periods of time. I am finding that it is difficult to do even the little tasks that I was able to do before I got GD. Playing tag with my kids and moving at their speed has become very difficult, my heart starts to go fast enough that I feel like I will pass out. My weight is the other problem I am having. I am fluxuating 6-8 lbs in a week. I have been doing lots of research on GD. My GP says that my levels are almost "normal", but not quiet there. My step father had his thyroid removed due to being hypo and he is very adimit that I see an endo. I, myself, am still very much confused and lost. Everybody has their opinions, and I know of the three main options for treatment, but is there anything else, and what happens if I chose just not to take meds and leave this untreated?

[hyperm]

#1072853

HI there,

I can appreciate what you are saying about feeling worse on the meds. After my diagnoses 4 years ago I was first put on carbimazole (similar to PTU but preferred med in UK). Then my body responded too well to the meds and my first endo put me on a blocking treatment of carbimazole and thyroxine (rather high levels of both). Anyway I was so swollen some days I couldn’t get my shoes on, couldn’t wear my wedding band and my hubby and mum would often notice my face would swell rather to the point it looked as though I was on high dosages of steriods. Anyway I kept telling him I felt AWFUL!, weight gain the lot and he just ignored what I was telling him as he said my bloods were fine. He actually had the rudeness to say about my weight gain "are you sure its not what is going between the teeth". I was most upset.

Anyway thankfully I changed endos – in my home town – he was baffled why I was on this blocking treatment and said I must have felt awful! Also he stated (my husband was furious!) that menstruating women should not be on these combined meds etc… the swelling etc.. was due to an overdose in meds for over a year! He asked if I wanted to gamble and come off them to see what happens. I lost 9lbs in a week! I knew I was retaining fluid! Then a month later I fell pregnant so never got the chance to see how it would have went – luckily able to come off the meds throughout the pregnancy.

Now you never said if hyper or hypo – but it can be dangerous to allow a thyroid to run overactive (and I presume to a point underactively too) infact you would most likely I submise through experience feel worse.

Sometimes its a matter of trying different meds / doses etc…. but I really think you need to see an endo and I am sure you will get the same advice from others on here. Not to frighten you but I had a thyroid storm post partum and it was a very frightening experience so if they gave me poison now I would take it… I am also having it removed once it starts to behave.

M x

[hwalter]

#1072854

Thank you for sharing you story with me. It makes me feel better to know that I am not the only one who is feeling worse on the meds. I have faith that I will feel better, but just wonder how long it will take! As for your answer, I am hyper (right now). Everything I have been reading says that within time I will go hypo. Not looking forward to that at all. Guess all I can do it wait!

[DianneW]

#1072855

hwalter,

When hyper I also had the problem of retaining fluid rapidly so that my weight could fluctuate, but by even a little more than you are saying. For me it was as much as 10 pounds within a few days’ time. That simply didn’t make sense, but that stopped occurring to that degree when my levels were stabilized. I still have no idea what caused it (my endo was no help).

I’m sorry to hear you feel worse taking the PTU. It usually takes from 4-6 weeks of faithfully taking ATDs for your levels to normalize, though you may begin to feel slightly better even before that. If your doctor keeps a close watch on your levels so you don’t become hypOthyroid then you’ll probably be glad you stuck with your meds. Don’t be afraid to communicate how you’re doing, but it’s basically up to you to comply with treatment. If you hope to have a remission, both the meds themselves and bringing your levels down play a role in bringing that about.

For anyone serious about not treating their disease, this board has nothing to offer. We don’t consider that an option.

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