[ely2009]

#1072204

I’m new to GD so I don’t have advice to offer about PTU.

I do, however, TOTALLY understand your first paragraph. Those words have come out my mouth – almost EXACTLY the same. I am a strong believer in prayer so i will certainly say one for you – for your emotional and physical health. Sometimes that’s all we can do, which is very frustrating. I too believe that life after death is a great thing, but not now – in 50 years after my children are grown and I’ve lived a full life. I am 36 with 2 children, ages 5 and 9.

Take care,
Emily

[Kimberly]

#1072205

enough3 wrote: I asked what my labs were and she said that my TSh was 0.2 and my T4 was in range. My Tsh is still too low…why would the Endo lower my dose of PTU???
And isn’t 3 months too long to wait to get labs done again??
I usually go 3-4 weeks.

Hello – The good news is that your endo knows that Free T3/T4 are actually better measures than your TSH, which is a "lagging" indicator and can stay supressed for quite some time. Had you stayed on the higher dose, it’s possible you could have ended up in hypo territory.

However, since you are still trying to get your levels stabilized, I *would* agree that 3 months is a long time to wait. Can you call the doctor’s office and ask if they can get you in sooner?

Good luck!

[hyperm]

#1072206

Hey,

You sound as though you are having a really rough time. Its not an easy disease to live with especially when your mood can change within minutes – yep I have been there back and forth the last 4 years and a horrible time most recently. Please just hang in there, once your bloods start to settle more you will begin to feel better and more stabilised within yourself.

I think that you are correct that you should have your bloods done monthly. I was getting mine done every 2 weeks before I took the thyroid storm. There is no harm in calling your endo and requesting more frequent tests.

We are all here for you

Love and prayers
M xx

[enough3]

#1019521

Urgh!

I’m so frustrated with GD. SO, tired of this cycle of ATD’s and ups and downs…Tired of the symptoms consuming me. One hour I feel fine and I’m not thinking about the symptoms…the next hour I think I’m going to die….and my mind goes so far down the road that I think that something freaky will happen to me..paranoid of every symptom I have. My fear of Death is driving me crazy!! I’m a believer in Christ and I believe that once I die, I will go to be with Him…..but I don’t want to die and everyday I feel like something is going to "take my life". I’m 30 years old with 3 kids and I want to live a long and healthy life….these fears are driving me crazy and I can’t get them to stop!!! If any of you guys are prayer people, please pray for me today.

Now here is my question:

5 weeks ago I was back in the beautiful ER with what they said was the start of a thyroid storm. At that time I was on 200mg of PTU. My TSh was 0.01 and T4 was a little over range. The Dr. raised my dose to 300mg. Last week I went to my Endo and he did more labs. I got a phone call from his nurse on Mon. telling me to lower my dose to 200mg for the next 3 months. I asked what my labs were and she said that my TSh was 0.2 and my T4 was in range. My Tsh is still too low…why would the Endo lower my dose of PTU???
And isn’t 3 months too long to wait to get labs done again??
I usually go 3-4 weeks.
Any input from you all would be great. I feel so alone in all of this and can’t seem to grasp how all the labs determine the dosage. I do understand TSH….but how do Dr. know when it need to be lower? SO FRUSTRATED

[Author]

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