# How long is average to go without replacement meds?



## jsgarden1 (Aug 29, 2009)

Now that my TT is over, and my pathology was clear, I called my Endo's office for an appt to get replacement meds started. The receptionist (young sounding) says they are scheduling the end of July. I very nicely said I cannot wait that long, I had surgery to remove my thyroid 8 days ago and will need to start on replacements soon. I even asked her if she had any idea of how long until I would need them. She didn't know. I tried and tried to convince her I needed to at least have a phone conversation with the doctor, which they could bill me for....but no, July. She suggested calling my PCP and see if she could start me......um, ok. I called the PCP and her secretary couldn't believe what I told her. They could get me in Monday, I was happy. She suggested in the meantime to call the ENT surgeon and see if they could do something. Phone call number 3...I called the ENT and the girl was speechless that as an established patient with the Endo for over 3 years they were making me wait, and that no, it wasn't good to wait that long. She made a phone call for me and at first was given the same answers I got. She said she got a little testy with them and said you mean to tell me this girl had surgery, an established patient, and you have no "emergency" appts. available...Guess what, I go tomorrow at 10:30! I will be mentioning the hard time I had with this to the doctor, whom I really like. So aggravating first thing in the morning. :aim33: I gues my question, now that I've ranted would be on average, how long did you wait for your "medication" visit with the Endo? I'm really interested to see.


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## Nowensmama (Mar 28, 2013)

I was supposed to call my endo. once I was home from the hospital. My appt. was going to be scheduled for the day after he got the pathology report. However, my surgeon was confident all was clear and started me back on meds in the hospital so my endo. called back and said he'd see me in a month. That seems insane and like the person at the desk was clueless to protocol for patients who just had surgery. My husband said they were a bit confused at first when he called and said they'd give me a June appt. and he said he just wanted to leave a message for my doctor because we were supposed to call him after surgery. They then called me back after giving the message to my endo. Sorry you've had such an ordeal!


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## jenny v (May 6, 2012)

Definitely mention the idiocy of the girl who you talked with to your doctor. They need to be aware of what their staff is doing wrong (and right, when it happens!) so they can nip it in the bud.


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## joplin1975 (Jul 21, 2011)

Well, when I hear stuff like this, I get snippy. Endos are specialists and I get that they are booking out that far...I really think the "blame" here falls on your ENT. My theory? The person who takes the thyroid out should make sure there's a baseline level of medication available for the patient so they don't crash. Long term maintenance can go on the endo's shoulder's, but immediately? I say that's the responsibility of the remover. 

To answer your question directly, I believe I went about four to four and a half weeks without meds, going into it hypo.


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## jsgarden1 (Aug 29, 2009)

Thanks guys, I keep thinking it's just me, and that it's maybe not something they start right away. I will be mentioning it to him. I'm just relieved to be going.


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## jsgarden1 (Aug 29, 2009)

Well, miracle of miracles, our Rite Aid just called and said my script of Levo.....I can't spell it, is ready. Wow. Wonder if they realized they made a tiny boo-boo


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## StormFinch (Nov 16, 2012)

When things are handled correctly it really depends on your numbers at the time of the surgery, which is why joplin is correct and the initial scrip should have fallen to the ENT. Despite months of anti-thyroids I was still pretty hyper going in. My surgeon gave me a scrip on discharge but made me promise not to start taking it until 10 days post op, to give my body a chance to use up some of the excessive hormones I had circulating.


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## jsgarden1 (Aug 29, 2009)

Stormfinch, that seems like the correct way to do it. I just see how hard it is for some on this board being hypo and I can't let it go that far. I have my mother in law with alzheimers living with us as well as permanent custody of my 3 year old niece. I don't want to be that person that has a hard time getting out of bed in the morning. Endo also knows that I was supposed to have knee replacement back in Feb. and because of my thyroid problem it was postponed. I need to get my arse on meds and get "normal" quickly. Knee doc is scheduling almost 3 months out at this point. They won't schedule without a clearance from endo. Arggg lol.


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## StormFinch (Nov 16, 2012)

Hopefully now that you've lit a fire under their butts you'll get what you need. Just make sure that whoever you have monitoring your levels is willing to run Free T3 and comfortable with prescribing T3 if needed. Some of us do quite well on just Levo and others need T3 supplementation to feel normal.

Wishing you wellness and strength with everything you have on your plate.


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## Andros (Aug 26, 2009)

jsgarden1 said:


> Now that my TT is over, and my pathology was clear, I called my Endo's office for an appt to get replacement meds started. The receptionist (young sounding) says they are scheduling the end of July. I very nicely said I cannot wait that long, I had surgery to remove my thyroid 8 days ago and will need to start on replacements soon. I even asked her if she had any idea of how long until I would need them. She didn't know. I tried and tried to convince her I needed to at least have a phone conversation with the doctor, which they could bill me for....but no, July. She suggested calling my PCP and see if she could start me......um, ok. I called the PCP and her secretary couldn't believe what I told her. They could get me in Monday, I was happy. She suggested in the meantime to call the ENT surgeon and see if they could do something. Phone call number 3...I called the ENT and the girl was speechless that as an established patient with the Endo for over 3 years they were making me wait, and that no, it wasn't good to wait that long. She made a phone call for me and at first was given the same answers I got. She said she got a little testy with them and said you mean to tell me this girl had surgery, an established patient, and you have no "emergency" appts. available...Guess what, I go tomorrow at 10:30! I will be mentioning the hard time I had with this to the doctor, whom I really like. So aggravating first thing in the morning. :aim33: I gues my question, now that I've ranted would be on average, how long did you wait for your "medication" visit with the Endo? I'm really interested to see.


I'll tell you one thing; "You have gotten really good at advocating for yourself!"

You are the "bomb!"


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## jsgarden1 (Aug 29, 2009)

Andros said:


> I'll tell you one thing; "You have gotten really good at advocating for yourself!"
> 
> You are the "bomb!"


I will tell you what Andros.....I am usually pretty calm and quiet, but have no problem making myself known if need be. LOL


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## jsgarden1 (Aug 29, 2009)

Just found this on my online chart..sound about right?

LEVOTHYROXINE SODIUM 137 MCG PO TABS
About This Medication
Instructions: 1 tablet daily
Prescribed by


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## Nowensmama (Mar 28, 2013)

My surgeon said most of his patients end up on between 100-200. He started me at 125.


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## jsgarden1 (Aug 29, 2009)

Good to know Nowensmama  I'm a little overweight right now, gained about 40 lbs. over the past couple of years. I think with Graves and everything being fast, my hunger was just unreal. I could eat all day @@ Probably mine is starting a little higher has to do with my weight. I sure hope I can get rid of some of this "excess baggage" when my labs get closer to normal


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## jsgarden1 (Aug 29, 2009)

Had my appt. this morning with the Endo. I had a chance to ask about the "problems" I had yesterday trying to schedule an appt. He was surprised to hear I was told to have my PCP start my meds. He said, just like you guys mentioned, that the ENT normally starts the meds. Endo called them in yesterday (he must have gone over phone messages lol) and today I had bloodwork before I left his building. He said the surgery site looks good, still somewhat swollen but it will go away. I asked him about my Vit. D from my last bloodwork. The range was something like (33-50) and mine was at 13. He ordered vit. D...I think it was 50,000 once a week for a while. I'm glad I thought to mention it to him, he hadn't caught it. They took my BP and pulse and I had been sitting 45 minutes before my appt. My darn pulse is still sitting at 100! My BP was high at 158/? He said even though they are high, he wants me to start the replacement meds tomorrow. He doesn't like his patients going hypo  I really like him. He ordered the following bloodwork:

TSH
T4,Free
Vitamin D
Calcium
Phosphorus
Magnesium
T3, Free

Sound about right?


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## joplin1975 (Jul 21, 2011)

I think that sounds about right.  Good job!


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## Andros (Aug 26, 2009)

jsgarden1 said:


> Stormfinch, that seems like the correct way to do it. I just see how hard it is for some on this board being hypo and I can't let it go that far. I have my mother in law with alzheimers living with us as well as permanent custody of my 3 year old niece. I don't want to be that person that has a hard time getting out of bed in the morning. Endo also knows that I was supposed to have knee replacement back in Feb. and because of my thyroid problem it was postponed. I need to get my arse on meds and get "normal" quickly. Knee doc is scheduling almost 3 months out at this point. They won't schedule without a clearance from endo. Arggg lol.


There is no reason to let it go that far. Only if you are in queue for RAI.


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## jsgarden1 (Aug 29, 2009)

No mention of RAI Andros...no cancer in pathology  I have to wait 6 weeks for a follow-up, but then should be able to schedule my knee surgery. It's not that I'm looking forward to another surgery, I am looking forward to the day it doesn't hurt to walk


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