[Antoinetta]

#1018098

Hi all, Bobbi, Jan Jake are you still there?

It has been 10 years ago since you helped me tremendously!
Here I am again coming back from the hyper hell after a medication mistake.
I feel bad..

[snelsen]

#1062683

Hi Antoinetta,
Hey,’what’s going on? I completely understand hyper hell, as almost everyone on this board can relate to! Probably your experience can help someone else? Now, I am assuming you are on the molasses slow road to getting you, your labs and the right dose of hormone replacement all in place, which WILL HAPPEN! Every darn thing about Graves’ and TED takes toooooooo long, for we rightly want results and feeling normal again as soon as we can!

Keep slugging away! I am fairly new, joined over a year ago, but I did go to the marvelous conference last fall. Bobbi posts fairly regularly, plus Kimberly and Ski are wonderful. I have heard about Jake, but I don’t recall a post from him for the past year.
Shirley

[Kimberly]

#1062684

Antoinetta – Oh, no…so sorry to hear that you had a hyper "blip" again. If you don’t mind sharing, what happened with the meds? Perhaps this is something that *everyone* should be on the lookout for!

Take care!

[Antoinetta]

#1062685

Hello you all,
thanks for being there again for me when I am sitting in front of my computer cryinging…you saved my live in 1999 when you were my only help in the world. I am living in Europe and 10 years ago there were no supports groups here.

I was treated 3 x with medication without successfrom about 1990 till 1998 for Graves. In 1999 we decided to for RAI. After this shock, the doctors send me home without thyroid replacement and I fell in the worse hypo ever…madness. I was 10 days in the hospital and after that 10 weeks in bed as a complete zombie. I lost over 20 kilograms of weight bacause my mind did not understand what eating is anymore. I did survive and in 2000 I had again the RAI. This time in Amsterdam done by the specialist who’s name was given to me by your team!!!! And all went well. I had a healthy baby boy in 2003 and was without any problems [1 medical vist a year] till recently.

Last October I found myself with a trombosis in my leg and was told to stop my anti-birth control pills as there may be a connection between these pills and the blood stolling. OK, I listened to this advice and have to take blood thinners till the end of April. However…………..nobody told me that my thyroid replacemetn had to go down tremendously when I stopped taking the birth control pills. I therfore continued every day my 175 grams of Thyrax and started to feel from strange to bad and worse. My GP told ne that I was probably getting into menopause and bla, bla.

I do not understand myself how I could have left it it going till January the 15th when I had to call the emergeny services in the middle of the night, crazy heart beating and all the rest. Worse than a natural hyper can ever be, a meds overdose.

I went for one week on a real low dose, then two weeks on a 150 micro grams, still too high and now 7 days on 137.12 micro grams. Today was the first day since months I feel like a human being again.

So all, please realize that all hormones you take are related one way or another.

I am not sure if my meds are the correct dose today but I must be close.

For all of you !!!!!! there is a light at the end of this hell. I am thinking about you all.

Hope this is helpfull and looking forward to reading you later today!!
Kindest regards,
Anne

[Antoinetta]

#1062686

I realy can do with some advice….I now experience a real slow pulse. Feel crap and nearly even down…everything seems to much. I have now bowels activity anymore and very cold hands…and voice is different.

I lowered my thyroid replacement about two weeks ago because I thought I was getting hyper again, although my blood results were in the correct ranges at that point….[sometimes I do not know how I feel anymore ” title=”Sad” />]

I now start to feel hypo and want to go back to the previous dose. Can all these changes kick in after two weeks? My endo is only availalble on the 28th…

Should I listen to my body? I am getting so confused from this not sleeping again etc.
Thanks for your support.
Anne

[Kimberly]

#1062687

Hi Anne – First of all, thanks for sharing your story with everyone. I knew that being on birth control pills could “bind” a certain amount of thyroid hormone, thus making it inactive. So this could potentially affect dosing for people on replacement hormone *and* on anti-thyroid drugs. But I had no idea it could cause such a huge swing in levels from discontinuing the meds!

What we heard in the last conference is that it takes 4-6 weeks to see if a particular dose of replacement hormone is right for you. The reason is that the replacement hormone has a “half-life” of seven days. This means that when you take a dose of meds today, half of that amount will still be in your system in 7 days…one-fourth of the dose will remain in 14 days…then one-eighth will be left in 28 days. With each day’s dose that you take, the amount of replacement hormone in your system changes slowly upwards or downward, depending on whether you are increasing or decreasing the dose. So making a dosage change before you’ve really had time to evaluate whether that dose is right for you can actually make it more difficult to dial in to your personal “sweet spot”.

Is there a nurse practitioner or someone you can talk to in the doctor’s office? If not, perhaps your pharmacist might be a good resource. I do think it would be a good idea to let a medical professional know exactly what dose you’ve been taking and what symptoms you are having – and then they can help you figure out where to go from here. Hopefully, you’ll get some relief soon!

[Antoinetta]

#1062688

Hi all,
Guess what.. I suddenly after 4 weeks feel much better..the sun is shining again. I know that I still have to take some small steps but I am getting there.

I spoke to my doctor this afternoon and he is in agreement with my meds proposal, a slight up with only a 6.25 m. grams.

I thank you all for being there when it is soo needed.

HOPE YOU ALL FEEL BETER SOON.
Anne

[mamabear]

#1062689

Anne, How are you doing?

[Author]

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