Graves disease General info Community Group
This is a collection of information gathered for our members.
HypOhell.
It sounds scary because it is scary.
I know....I've been there....too many times.
How did this happen?
I had doctors that didn't know how to medicate me properly
I want to help prevent this from happening to people.
If a person chooses ATD's as their treatment choice, a doc that doesn't medicate properly will prescribe too high a dose that will bring on hyPO symptoms for the patient.
If a person chooses RAI or surgery, there is no thyroid left to produce the thyroid hormones the body needs to function. A doc that doesn't medicate properly will not prescribe enough thyroid hormone replacement medication and that will bring on hyPO symptoms for the patient.
I found a site that has a pretty comprehensive list of hyPO symptoms.....there are more lists out there with additional symptoms.
Things got to a point during my treatment that I took to Googling any new symptom and hyPOthyroidism.....and I always found the symptom on one of "the lists".
Now, I've always tried to be positive during my Graves' journey and always worked to move forwards - the docs didn't make it easy for me but I refused to give up.
I didn't realize how bad things were for me until yesterday, when I decided to count up how many symptoms I've had.
I have had as many as 60 hyPO symptoms at one time - that was during my worst-ever trip to hyPOhell.
A "short trip" to hyPOhell could easily bring on 10-15 symptoms.
It's called hyPOhell for a reason.
Here's a link to the site:
http://www.stopthethyroidmadness.c...
The title of the site gives an indication of just how bad things are out there for thyroid patients, not just those of us with Graves' disease.
The worst part is that it is COMPLETELY PREVENTABLE!!!!!
You're probably saying to yourself.....what is the answer? How can I prevent a trip to hyPOhell?
The answer is suprisingly simple.
You've heard many of the "regulars" on here tell you to dose to achieve at least mid-range FT4 (Free T4)
THIS IS CRUICIAL TO YOUR WELL-BEING!!!
FT4 is a thyroid hormone level and it is the most reliable indicator of thyroid function.
Thyroid hormone levels are like shoe sizes.....each of us has his/her own "best fit".
We are not comfortable wearing someone else's shoes. Therefore, we won't be comfortable "wearing" someone else's thyroid level.
Most people wear a shoe size somewhere in the middle of the range of the most common sizes.....this same concept applies to thyroid hormone levels.
I dunno about you, but if I had to choose, I'd rather wear a slightly-too-large shoe than try to jam my foot into a too-small shoe.
Same thing with thyroid hormone levels.
We didn't know our "thyroid hormone level shoe size" before we got sick.
So, it's best to "try on" the most common thyroid hormone level.....and the most "commonly comfortable" level is at least mid-range FT4.
Your starting meds dose should bring you into mid-range FT4.....then, your dose should be adjusted to keep you there.
You can then "wear" that mid-range FT4 for a little while to make sure you're comfortable.....if it doesn't feel completely comfortable, your dose can be tweaked just a little bit.
Docs seem to dose in such a way that we are crammed into shoe sizes (thyroid hormone levels) that are too small, too low for our body's needs.....and that's when we get those hyPO symptoms
How does this happen?
The docs are looking at the leather the shoes are made of when they should be helping us find the right size.
In thyroid terms, this means our docs are looking at our TSH (an irrelevant factor in Graves' disease) when they should be helping us find our "best place" FT4 level.
So, if you want to avoid a trip to hyPOhell, you MUST do everything you can to get your FT4 to mid-range, at least and STAY there.
It is possible....I've learned how to do it.....I don't even need a doctor to help me now.
I've seen 3 endos since my Dx in June 2007......the first two pushed RAI....the third pushed surgery. All during my very first appointment.
It frightens me to think that these same doctors that didn't medicate me properly on ATD's would be the same doctors that wouldn't have medicated me properly after RAI or surgery.
I would probably have wound up living in hyPOhell - some peeps on here have visited hyPOhell for as long as a year - absolutely frightening.
This doesn't have to happen to anyone......we are giving you the tools to prevent it from happening to you.
Use the knowledge you've gleaned on here to advocate for the care you deserve.
Get your FT4 to mid-range, at least and keep it there.
It sounds scary because it is scary.
I know....I've been there....too many times.
How did this happen?
I had doctors that didn't know how to medicate me properly
I want to help prevent this from happening to people.
If a person chooses ATD's as their treatment choice, a doc that doesn't medicate properly will prescribe too high a dose that will bring on hyPO symptoms for the patient.
If a person chooses RAI or surgery, there is no thyroid left to produce the thyroid hormones the body needs to function. A doc that doesn't medicate properly will not prescribe enough thyroid hormone replacement medication and that will bring on hyPO symptoms for the patient.
I found a site that has a pretty comprehensive list of hyPO symptoms.....there are more lists out there with additional symptoms.
Things got to a point during my treatment that I took to Googling any new symptom and hyPOthyroidism.....and I always found the symptom on one of "the lists".
Now, I've always tried to be positive during my Graves' journey and always worked to move forwards - the docs didn't make it easy for me but I refused to give up.
I didn't realize how bad things were for me until yesterday, when I decided to count up how many symptoms I've had.
I have had as many as 60 hyPO symptoms at one time - that was during my worst-ever trip to hyPOhell.
A "short trip" to hyPOhell could easily bring on 10-15 symptoms.
It's called hyPOhell for a reason.
Here's a link to the site:
http://www.stopthethyroidmadness.c...
The title of the site gives an indication of just how bad things are out there for thyroid patients, not just those of us with Graves' disease.
The worst part is that it is COMPLETELY PREVENTABLE!!!!!
You're probably saying to yourself.....what is the answer? How can I prevent a trip to hyPOhell?
The answer is suprisingly simple.
You've heard many of the "regulars" on here tell you to dose to achieve at least mid-range FT4 (Free T4)
THIS IS CRUICIAL TO YOUR WELL-BEING!!!
FT4 is a thyroid hormone level and it is the most reliable indicator of thyroid function.
Thyroid hormone levels are like shoe sizes.....each of us has his/her own "best fit".
We are not comfortable wearing someone else's shoes. Therefore, we won't be comfortable "wearing" someone else's thyroid level.
Most people wear a shoe size somewhere in the middle of the range of the most common sizes.....this same concept applies to thyroid hormone levels.
I dunno about you, but if I had to choose, I'd rather wear a slightly-too-large shoe than try to jam my foot into a too-small shoe.
Same thing with thyroid hormone levels.
We didn't know our "thyroid hormone level shoe size" before we got sick.
So, it's best to "try on" the most common thyroid hormone level.....and the most "commonly comfortable" level is at least mid-range FT4.
Your starting meds dose should bring you into mid-range FT4.....then, your dose should be adjusted to keep you there.
You can then "wear" that mid-range FT4 for a little while to make sure you're comfortable.....if it doesn't feel completely comfortable, your dose can be tweaked just a little bit.
Docs seem to dose in such a way that we are crammed into shoe sizes (thyroid hormone levels) that are too small, too low for our body's needs.....and that's when we get those hyPO symptoms
How does this happen?
The docs are looking at the leather the shoes are made of when they should be helping us find the right size.
In thyroid terms, this means our docs are looking at our TSH (an irrelevant factor in Graves' disease) when they should be helping us find our "best place" FT4 level.
So, if you want to avoid a trip to hyPOhell, you MUST do everything you can to get your FT4 to mid-range, at least and STAY there.
It is possible....I've learned how to do it.....I don't even need a doctor to help me now.
I've seen 3 endos since my Dx in June 2007......the first two pushed RAI....the third pushed surgery. All during my very first appointment.
It frightens me to think that these same doctors that didn't medicate me properly on ATD's would be the same doctors that wouldn't have medicated me properly after RAI or surgery.
I would probably have wound up living in hyPOhell - some peeps on here have visited hyPOhell for as long as a year - absolutely frightening.
This doesn't have to happen to anyone......we are giving you the tools to prevent it from happening to you.
Use the knowledge you've gleaned on here to advocate for the care you deserve.
Get your FT4 to mid-range, at least and keep it there.
http://www.stopthethyroidmadness.com/long-and-pathetic/
I was thinking about this thread and realized it might be a good idea to share my story and explain why I am so motivated in "getting the word out" about "trying on" mid-range FT4
I took Methimazole for 27 months and went off 1.25mg after going hyPO......my FT4 rose to mid-range after a month off meds....and it stayed there.....I feel awesome !! Since I am off meds and euthyroid, that means I'm in remission!!! I wish the same for everyone (without the trips to hyPOhell :)
Here's my story:
http://www.dailystrength.org/c/Graves_Disease/forum/8823547-my-biggest-mistake