[mamabear]

#1018459

Well I wound up in the ER, not sure i’ve ever been in an ER except for babies.
Long story short, I might have lyme and have to wait for the western blot to come back. the titer came back positive but my dr. doesn’t want me to start meds till she is sure. the wait is hard and the pain is becoming very not cool.

again I guess it could be worse but my body is taking a beating with all of these infections and I fear graves will come out of remission so I just pray it wont if it does i’ll just take it from there.

[snelsen]

#1065009

Hi mamabear,
I sure am sorry to hear this news. It is the waiting for results that is so hard, especially when you are in pain.
You have sure "had it," in spades, just wanting to write to tell you I am thinking of you, be sure to write when you know the results, and the next plan so you can regain your health. Do you live in an area where lyme disease is prevalent?
I am simply deciding for you, that you will not have a recurrence of Graves. Enough is enough! How old are your kids?
This really stinks (how you feel.)
shirley

[cynthia]

#1065010

Hi newily tx. for graves am looking forward to gettting "well enough" to have surgery..can I ask how were you treated in the past for graves???? why not surgery if not???? the fear of a replay of my horrid symptoms are my greatest nightmare at this point am so looking forward to surgery to get this damm thing out of me!!!! I hear that that will not make me well but even though am RN don’t really understand how that is so realize that I will be managed by throid medicines the rest of my life but at this point not wanting to live like I am now can’t sleep problems with just walking arround used to be so active now almost chained to my bed ugh!!!! don’t know if this irelavent to your situation but was intereted in your feeling about my thoughts thanks for your post and hope all gets better for ya soon thanks cb

[mamabear]

#1065011

I do, lived in wooded area 14 years, my son who is now 15 had it when he was 3. it was simple enough though because he had a full bullseye.I remember the antibiotics although plain amoxicillin they knocked him on his butt. I stayed home 3 weeks with him to go through it. I’d do it again too.

I am simply deciding for you, that you will not have a recurrence of Graves. Enough is enough!

I like this part… think I’ll keep a note of this just in case Graves’ comes back, I whip this out and say hey you can’t because this was thought of and written down!!! ROFL!

I have 4 children, two boys ages 15 and 7, two girls 5 and 3 but going on 4 and 6 very very soon
It does stink but I guess it could be worse, I know Lyme is no joking matter either but it surely could be worse. I am blessed with many things and the knowledge to be able to advocate for myself

cynthia wrote:.can I ask how were you treated in the past for graves????

I was trying to get pregnant so the choice of drug for me was PTU (Propylthiouracil).
Long story very short:
Married had a child, divorced
Remarried so was trying to get pregnant
Had flu 11/2000
Feb 2001 wound up with symptoms that led me to a dr. for check up.
3 weeks<—-Notice the amount of time there, 3 weeks later I was called and told you have Graves’ disease you have to go to an Endo!
I was mad that they waited 3 weeks and took my labs and went to see an Endo who was a total jerk. Said RAI asap, I said no would rather try meds. He said no, my dh said I support you. I told dr. to kiss my butt and left.
Went to another Endo (older dr. from new england and great bedside manner) he said lets try PTU but wouldn’t guarentee anything. said the PTU would take about a year to level and we would go from there.
I was mortified that I couldn’t get pregnant but was willing to work with this because the dr. was so caring.
3 months after treatment my levels were normal. Dr. laughed and said although he knew i had a mild case he didn’t think it would be that fast. I told him I changed my eating habits and was trying to be stress free. lol
I was told to try to get pregnant.
Was seeing a dr. who deals with pregnancy and thyroid and I got pregnant about 6 months after I levels were normal.
Went off PTU due to pregnancy was leveling out TSH and didn’t go back on them again.
Got pregnant again with no meds for thyroid had baby
I did get a virus along with the one of the kids and graves came out of remission(it was a horrible virus)
went on meds for a short time and back into remission I was. went off meds and 7months later with no meds got pregnant again !!!!!
It was one other time I had to take a short course of meds to put me back into remission and then off of them again and have been in remission 3 years with no meds as of right now.
I have to say that I am one of the lucky ones. THe symptoms stink but the meds work well for me so I am very happy with my choice to use the PTU. If i had to do it again i would choose PTU or Tapazole depending on what the dr. wanted me to use since I am not planning on more children.
If i get really bad I might opt for surgery because I have 4 kids and RAI wouldn’t seem like the right thing to do for me. I don’t know for sure what I would do because i’m not that in that situation.
I have to say that although I am in remission I have symptoms, and I had symptoms my entire life before I was diagnosed and my labs were normal. I think that just goes along with having graves.
We can look back and see the signs but didn’t know what they were for.
I fear many things but I do try to say that if I dont know what it is I can’t kick it’s butt.
Once we know what it is, whether it be Graves, the flu, or even cancer we can deal with it and move on. Its scary but that is the way I look at things.

There is no right or wrong way to how each of us cares for our graves. It should be a choice you make that will help you the best way. As I said before, I might opt for Surgery due to the kids I have if it ever were to get bad. Everyone is different though. One thing I did when I was trying to get pregnant and dealing with Graves was to learn to crochet, I wished I had had someone who knew around me but I didn’t. So I just got a book and by trial and error learned on my own. It is a very very relaxing thing to do and it passes the time. when i would sit up in bed with nothing to do but look at the walls with my eyes all wide and couldn’t sleep I would pick up my crochet and be able to fall asleep eventually. But at least I wasn’t "non productive". lol
You have found a great place here, continue to use us as support. I’m willing to answer any questions so If I missed anything please let me know.

[thompson91]

#1065012

mamabear I’m glad you told your story. I was wondering what it was but didnt want to ask. You inspire me since I have 4 kids but there all boys 17, 14, 10, and soon to be 6. I’ve wondered how you got into remission. Best of luck to you with lymes. I’ll be saying a prayer for you. You’ve come so far and have so much spunk you can kick it and not get graves flare ups again. Remission, remission, remission. Keep us posted.

[Kimberly]

#1065013

Oh, no…with the run of bad luck you’ve had lately, things have *got* to turn around soon. Here’s hoping there is a winning lottery ticket (and NO Graves’) in your near future. Wishing you all the best!

[Author]

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