Re: New alarming test results/SImon

[Guest guest]

The funny thing is, just last week I was thinking I was hypo then hyper and

then not sure. I thought by lowering a few mgs on my own I had contributed

to a see-saw effect and vowed never to do it again. But when I see I'm

border-line hypo according not only to my symptoms but on test results, I

have to wonder. So confusing.

I've been using my eyes as a barometer since they are first and foremost to

react.

They were sore when hyper and then okay and then really sore when approaching

hypo. Other than that I have no other clues. I'm not getting much sleep

again and I thought that was purely a hyper symptom but apparently I'm wrong

there.

I understand it is not good to drop more than 5 mgs in one shot but what if

you find yourself stranded at almost hypo levels (based on my FT4) and taking

30 mgs one day and 20 the next and still wondering if 20 is too high! It

seems as if there are exceptions to the " no more than 5mg drops at a time

rule " . Are there any standard procedures to lowering when was is tinkering

on the edge of hypo? Is the " settling " into a dose period over and do you

switch immediately to maintainance levels? I want to believe my endo and

stay on 20 till I see him again but at what expense to my eyes?

Thank you, Simon, and everyone else, for your insight and sharing your

experience with me. I appologize for all the questions I feel like I'm

constantly filling everyones email up with. I keep thinking " just one more

issue and I'll be done asking for help " but every single day offers up a

different nuance of some problem relating to having

Graves. I know one day I'll be over this but in the meantime it is

frustrating.

Thanks again,

[Guest guest]

The funny thing is, just last week I was thinking I was hypo then hyper and

then not sure. I thought by lowering a few mgs on my own I had contributed

to a see-saw effect and vowed never to do it again. But when I see I'm

border-line hypo according not only to my symptoms but on test results, I

have to wonder. So confusing.

I've been using my eyes as a barometer since they are first and foremost to

react.

They were sore when hyper and then okay and then really sore when approaching

hypo. Other than that I have no other clues. I'm not getting much sleep

again and I thought that was purely a hyper symptom but apparently I'm wrong

there.

I understand it is not good to drop more than 5 mgs in one shot but what if

you find yourself stranded at almost hypo levels (based on my FT4) and taking

30 mgs one day and 20 the next and still wondering if 20 is too high! It

seems as if there are exceptions to the " no more than 5mg drops at a time

rule " . Are there any standard procedures to lowering when was is tinkering

on the edge of hypo? Is the " settling " into a dose period over and do you

switch immediately to maintainance levels? I want to believe my endo and

stay on 20 till I see him again but at what expense to my eyes?

Thank you, Simon, and everyone else, for your insight and sharing your

experience with me. I appologize for all the questions I feel like I'm

constantly filling everyones email up with. I keep thinking " just one more

issue and I'll be done asking for help " but every single day offers up a

different nuance of some problem relating to having

Graves. I know one day I'll be over this but in the meantime it is

frustrating.

Thanks again,

[Guest guest]

The funny thing is, just last week I was thinking I was hypo then hyper and

then not sure. I thought by lowering a few mgs on my own I had contributed

to a see-saw effect and vowed never to do it again. But when I see I'm

border-line hypo according not only to my symptoms but on test results, I

have to wonder. So confusing.

I've been using my eyes as a barometer since they are first and foremost to

react.

They were sore when hyper and then okay and then really sore when approaching

hypo. Other than that I have no other clues. I'm not getting much sleep

again and I thought that was purely a hyper symptom but apparently I'm wrong

there.

I understand it is not good to drop more than 5 mgs in one shot but what if

you find yourself stranded at almost hypo levels (based on my FT4) and taking

30 mgs one day and 20 the next and still wondering if 20 is too high! It

seems as if there are exceptions to the " no more than 5mg drops at a time

rule " . Are there any standard procedures to lowering when was is tinkering

on the edge of hypo? Is the " settling " into a dose period over and do you

switch immediately to maintainance levels? I want to believe my endo and

stay on 20 till I see him again but at what expense to my eyes?

Thank you, Simon, and everyone else, for your insight and sharing your

experience with me. I appologize for all the questions I feel like I'm

constantly filling everyones email up with. I keep thinking " just one more

issue and I'll be done asking for help " but every single day offers up a

different nuance of some problem relating to having

Graves. I know one day I'll be over this but in the meantime it is

frustrating.

Thanks again,

[Guest guest]

mercai@... wrote:

> Other than that I have no other clues. I'm not getting much sleep

> again and I thought that was purely a hyper symptom but apparently I'm wrong

> there.

Irritating isn't it, I don't sleep much hyper or hypo, just a

small range in between where I sleep 7 or 8 hours a night - pure

bliss.

I also seem to be getting weird effects due (perhaps) to fT3

being high and fT4 being low, I'm having a productive week of

work at the moment with dry elbows. The dry elbows only ever

turned up before when I was hypo, and I never got anything

productive done when hypo before. Indeed I really wonder how so

many mothers cope at all with kids, a job, and a thyroid

problem.

So sometimes mixed symptoms can indicate a mixed up hormone

system, if there is doubt insist on a blood test before changing

dose. I would have sworn I was hypo earlier in the year, turned

out I had a viral infection .

> I understand it is not good to drop more than 5 mgs in one shot but what if

> you find yourself stranded at almost hypo levels (based on my FT4) and taking

> 30 mgs one day and 20 the next and still wondering if 20 is too high! It

> seems as if there are exceptions to the " no more than 5mg drops at a time

> rule " .

Maybe I'm cavalier but it is just finding the right dose,

without ill effects.

If I miss a dose or drop too low within hours my thyroid is

swollen, I'm having hot flushes, and headaches, this can be as

little as 25mg PTU, or about 2.5mg of methimazole. My aunt on

the other hand would ween down quickly, and have a month or

serveral drug free before it was obvious she was going hyper.

You don't want to have a reaction like mine, it isn't good for

you and you want to encourage the thyroid to settle down and be

mellow. Swelling of the thyroid also occurs when hypo, this will

indicate you are too hypo, and you are finally producing TSH.

> Are there any standard procedures to lowering when was is tinkering

> on the edge of hypo?

Closest to a procedure would be the algorithmns at

http://www.thyroidmanager.org/

As suggested people vary, so you have to interpret these with a

pinch of salt, they suggest cutting back if the TSH goes

" normal " (spot the arbitary border, why should the lower level

of normal TSH range matter to Graves' patients?). Don't get me

wrong I think they are good advice, just some of it is based on

expert opinion not rigorous scientific testing of protocols.

Your, and your doctor's opinion, may also be as valid for your

specific case.

> Is the " settling " into a dose period over and do you

> switch immediately to maintainance levels? I want to believe my endo and

> stay on 20 till I see him again but at what expense to my eyes?

As you switched down recently, a couple of weeks at 20 is

probably in order, but if you still have the same hypo symptoms

let the office know, and if your feeling educated suggest

another smaller dose to them. Your body won't wait around for

endo appointments.

Whilst TSH suppression in Graves' is well recognised to persist

beyond the initial hyper stage in some people, it is also

possible the TSH is suppressed by disproportionately high levels

of fT3. This is one of the reasons we encourage everyone to get

TSH, fT4 and fT3 as the basic measure of their thyroid function

(regard them as 'necessary but not sufficient' to borrow a

phrase from my maths classes), these should be done monthly at

first, and during problem periods, once things settle you can

look at less frequent tests.

Some doctors insist on blood tests with every cut in dose, mine

insists on not wasting a blood test if I've only just switched

dose, but postpones tests to give me a month on the same dose.

Early on it was easy, I'd been overdosed by my previous doctor,

so it was cut/cut/cut, but now I find it harder to tell.

Anyway sounds like you'll recognise and report your hypo

symptoms in a timely manner, so the doctors will have no excuse

not to get it right with you ;-)

Simon