Hi Snippy:

I realize you are having difficulties with working with the doctors at the facilities you are using because of not having money or the freedom to choose your doctors and how you want to do things.

Might there be any possibilities you would be able to get labs done more often? I am assuming you are taking the MMI twice a day, at least, for every 12 hours?

I am seeing that for you dropping from 15 mg to 5 mg is too big of a drop. Perhaps dropping to 10 mg might have been a better choice?

I am assuming you are following the suggestions offered here at:

http://www.dailystrength.org/groups/graves-disease-general-info

I can tell you that if 30 mg is taken, you will very quickly go hypO again.

If it were me, I would probably just have increased to 10 mg taken in divided doses of twice a day and recheck labs in six weeks to see what kind of a progress have been made.

{{{hugs}}}

I like to know what do these Dr's do just stop treating us if we refuse RAI or removal?

I would be afraid of the 30mg also my free t 4 was higher at 4.25 prescribed 30 mg only took 20mg then felt it was to much went to 15mg then 12.5mg all in six weeks I know you shouldn't but glad I did

Six weeks blood test HYPO 0.55 free t 4 I stopped the meds 3 days and started back up on 7.5 not the 10mg she said to reduce to so we will see.

I don't know why the medication can't work for you it seemed it was working Sick of these DR's and the demands they try to make us make....

maybe like mmztcass said to low of a drop?

So sorry hang in there!!!!

Hi Snippy,

Boy, your learning things the hard way. I did too. (((hugs)))

So.. you finally clawed you way back up out of the hypo hell pit, after far too long being overdosed. Then you let the new hospital torture you for awhile,and finally got up the nerve to lower the dose yourself.

Now that lower the dose was the right thing to do. BUT... it should have been easier by being given labs and lowering slowly. but you had been pushed in corner.
Then you should have had a FT4 lab at 4 weeks after the dose change. Then adjust the dose. Then another lab at the next 4 weeks. If that had been done you would by now be at a pretty darn good place.

Not allowing labs at this hospital is WRONG. It's wrong no matter what treatment you do.

If this were me, and remember, I'm self pay too, I would use the hospital , but add the FT4 at a regular doctors office between hospital labs. When I did this, I was paying $28 for my FT4 each month. Its' just a matter of working within your budget and believing how you feel, and your future health is worth that amount of money.

No matter what treatment we do, this is the same. Treating after surgery or RAI is NOT simple or easy. What would you do if you spend another couple years hypo like you were, and no doctor lets you purchase enough replacement hormone ?

I can tell you what happened to me when I needed T4 pills back hen I slid hypo for a couple years. I had to pay new doctors, more new doctors, till I found one that would help. Then I had to come up with the $$$ for more and more labs, then the pills,then wait 8 weeks for the pills to work. replacement hormone pills are much slower than our ATDs.This is part of the talk with your husband when you explain you need the money for the FT4 labs. He was there the whole time you were so sick and miserable being hypo.

For self pay, a life time of this on replacement is TONS more expensive.

I agree whole heartedly with Pam...I also was kept in hypo hell for over a year by my docs before I took charge...it was a lesson learned the hard way. This is your health...28$ per month is not a lot when you look at the big picture. I would hate to think how these docs would treat you if you had your thyroid ablated. If they cant dose your ATD's correctly how on earth can you believe they would with replacement hormones. I've been on replacement hormones for a little over a year and like ATD's....there is tweaking, regular labs and keeping track on how your feeling. Its really not any different other than with ATD's you still have the chance of going into remission. Some people here have been on ATD's for years and go into remission.

Labbing regularly is the key. You can not possibly be on top of things without it. I labbed every 4 weeks regardless of how I was feeling. Its only been this last 11/2 years that I now lab every 8 weeks and I've been in remission now for over 3 years. In Dec I will start to lab every 12 weeks.

I know things are different in the States compared to Canada. Even though we have social medical...its still hard to find a doc that will dose correctly but they are out there. Dont give up snippy...you will find yours...Big Hugs...Kathy

Hi again Snippy,

I'm still thinking about this. I really think there is some way you can work this, useing the hospital for the bulk of the labs and then adding the 4 week FT4 at a regular doctors office. Then it' a matter of finally learning exactly where within the reference range is the optimal spot for you.

So by January you would be having the bulk labs done at the hospital, and the follow up appt would be much easier to explain..since I'm at good levels and feel good, I do not choose to undergo any radical treatment at this time. That puts them in the position of needing to say..well..think about it, so for today here is your new scrip, see you in the spring.

It is simply not legal to force a patient to RAI or surgery. They are obligated to yell when your levels are way off, like they are now. They did do something. They told you to overdose yourself..but you know better now. If you were on 20 for two weeks, then 10, a lab will tell you then how it's going. If you went 10 mg for the next four weeks instead, that would work too. your choice.

Remember, the standard starting dose is 20 mg. higher and more risk of side effects.

Somehow you need to find the money to get those FT4 tests done, and done on time. Maybe tell hubby" it would probably cost less than my legal defense when I finally snap".

I find most doctors are sympathetic and will work with me when I need help, but I have to be the one that knows exactly what each thing costs, and when I need it, and when I don't need it right now. A new doctor needs a lot of explaining, established doc need constant reminders..but they do cooperate.

With an established family doc, it will be easiest. You will need one appt cost to set it up. Explain what's going on as far as the hospital not running the needed testing of the FT4, and could he please supplement this lab, so you can use the medication correctly.

Then on the following months you call his office and request a lab request. Then you need to be sure he signs it " Mail copy to patient " he will tell you how often he needs to see you. That will probably be 3 months this time, then each 6 months..becasue he knows this is only a supplemental lab to help you stay on track.

You need a folder with all your labs, and a calendar on the desk. You are the one taking the responsibility to track all this, and help yourself. Be sure to plan everything ahead of time, so you don't start over looking labs when they re needed. Be sure you are getting the refills and try to keep a stash for just in case. No matter what treatment is picked, this still needs to happen for each of us.

So now you figure out what this extra is going to cost. Say the FT4 is $50 now, add the doctors cost... count the months and find a figure. That's what you need extra each month. So say starting 1/3 of the doctors visit is $41( .that's the highest, yours is probably less.), plus the $50... two months the third month the hospital pays.

We need $141 every three months. Which is $47 a month, starting..less later. If you picked up a job working a few hours every other Saturday afternoon, you would need to earn 23.50 plus the taxes that need to be paid.

Or... $47 dollars a month divided by 4 1/3 weeks is $14.24 you and hubby need to pull from the household account, and give up something. This is all doable.

oh oh.. I lost my head back there in the numbers.

Starting over.

Cost for the first three months.
50 labs ( FT4 allowing for inflation)
50 labs
125 doctor

total $252

Cost per month $75
Cost per week $17.44

Sorry..I was thinking too far ahead of where I was typing. :)

typed total wrong but cost per month is still correct.
Distracted but worried about you.