RE: anyone else out there had ups & downs with their recovery from thyroid problems?

[Guest guest]

Hi hon

Well I won't go on about how I have yoyo ed up and down. More down

than up as yet. I gets so you darne't post your improvements in case

of the drops lol.

As I haven't yet got your level of improvement, I cannot offer any

advice except maybe that you could be overdoing it as your body is

still going through the healing process? Just a thought hon. Take

care. Keep going, write your journal so you can go back to see what

you were doing when you felt well etc and what you did beside being

attacked by cake before you felt worse.

Hope to see some posts saying you have come back up soon

lotsa luv

Dawnx

[Guest guest]

> Have others out there had a similar experience where you THINK you

are

> finally getting better and then things go backwards again? What

did

> you do to try and improve your health again?

Hi P

Yes, many times. Basically all I kept on doing was what I was doing

before I hit the downer. That's probably just what you don't want to

hear because at such a time you feel you want to do something extra

top get back on track and beyond.

Sounds as if it's your adrenals taking up the slack from your little

gluten error. I still find that however well I'm doing, if I slip up

somewhere I often pay for it adrenal wise over and above anything I

would expect to and for much longer than I would have anticipated.

As unhelpful as it sounds, what it takes is patience and a return to

what you were doing before that brought the improvement. Perhaps

rest a bit more, do whatever helps you relax and tell yourself it's

just a blip, you'll soon be back where you were. Easier said than

done I know! :0)

Take care

x

[Guest guest]

Yes, me too. I've had CFS for 5 years and it has totally altered my

life. I cant work, and cannot do all the fun things I used to do,

like horseriding, mountain biking, hiking on Exmoor. I had to sell my

beloved horse, which just about broke my heart. I could go on....

In those 5 years I've had moments when I've felt like I was finally

about to beat this thing, only for it all to go belly up again.

Like Dawn said, it gets so you darent even hope that the latest

improvement means you're on the mend. The disappointments are ...

well... soul destroying. And its not just for myself; its just as

tough on my husband, so I feel like I have to shelter him from the

disappointments too.

I cant offer much by way of advice other than to reiterate what

said about the adrenals. With what I know now, I believe that

all my previous failures were direcetly caused by adrenal problems.

And if I'd known enough, or found a doc who knew enough, I probably

would have overcome this illness years ago.

Have you done the necessary adrenal testing or are you taking the

recommended adrenal supplements (HC, DHEA, NAX, etc) as appropriate to

you.

When I saw Dr P for the first time recently he told me he thought the

root cause of my problems was when I had a thyroidectomy 20 years ago.

The idea that my problems were 15 years brewing nearly knocked me to

the floor. All the things I could have done differntly, if only I'd

knowns.... Aint hindsight grand ???

However, onward and upward. I do believe I will get better; what I

dont know is how long that will take. I think its a case of finding

the right solution, so to speak. That doesnt mean there havent been

times when I have felt utterly despondent, because I have. But I also

recognise that eventually the despair will pass. Nothing lasts

forever, even crappy health!!

The other thing to recognise is that whatever good things you're doing

for yourself now, be it taking supplements, or doing something that

brings you pleasure, those things are ALWAYS worthwhile, even if it

feels right now like they're doing nothing for you. Our pool ole

bodies are already so low that after a set-back they take time to

regain equilibrium

All I can say by way of encouragement, is nothing stays the same.

Eventually this too will pass.

Get your adrenal status checked and start taking whatever is required

to support them.

I hope you get over this hump really soon.

Marie

[Guest guest]

......Have others out there had a similar experience where you THINK you

are finally getting better and then things go backwards again? What did

you do to try and improve your health again?

Oh yes...with bells on! We've been poorly for a long time and it seems

to be constantly two steps forward and one step back. We're all

different and so it will all be a bit hit and miss until we find the

right " mix " for our needs. But we will get there, and the grotty days

do gradually become less frequent.

I've had really good days and then crashed, which is soul destroying,

but each time I've just thought about what I may have changed and

through a process of elimination (and a bit of trial and error) and

help from this site and Dr P, the bad times have helped me figure out

what helped and what didn't.....and now I'm definitely on the right

path.

Sorry if that was a bit long and convoluted..but the real point is

we're all in a better place now than we were when we were relying on

GPs who don't have the first clue how to treat us!

Take care...you will get better!

Pen x

[Guest guest]

Hi

Pat

Could

it be that you are simply not taking enough thyroid hormone replacement - even

though you cannot tolerate any increase, this could be a problem. You need to

find the reason why you can't tolerate T3 or an increase in T4 and take it from

there. Are you allergic to the fillers or do you have thyroid hormone

resistance?

luv -

Sheila

Have others out there had a similar experience where you THINK you are

finally getting better and then things go backwards again? What did

you do to try and improve your health again?

I take numerous supplements, eat healthy food, take thyroxine (can't

tolerate T3 in any form), use very simple soaps/shampoos/conditioners,

etc.

P

[Guest guest]

Hi Penny,

Don't know enough about this, but I remember Dr P mentioning

something about a crossover between allergy to wheat and damage to

the thyroid. If this all worsen during an episode when you ingested

gluten, could it be that you have just had a worsening of your thyoid

condition at the same time, and nee dmore meds?

Leah x

>

> Hi Pat

>

>

>

> Could it be that you are simply not taking enough thyroid hormone

> replacement - even though you cannot tolerate any increase, this

could be a

> problem. You need to find the reason why you can't tolerate T3 or an

> increase in T4 and take it from there. Are you allergic to the

fillers or do

> you have thyroid hormone resistance?

>

>

>

> luv - Sheila

>

> Have others out there had a similar experience where you THINK you

are

> finally getting better and then things go backwards again? What did

> you do to try and improve your health again?

>

> I take numerous supplements, eat healthy food, take thyroxine

(can't

> tolerate T3 in any form), use very simple

soaps/shampoos/conditioners,

> etc.

>

> P

>

[Guest guest]

Hi Marie

I am sure

that once you get your adrenals sorted and you start on thyroid hormone

replacement that your symptoms will disappear and you will regain normal

health. What did Dr P suggest regarding a thyroid problem, or doesn't he think

this is a problem with you and that it is just your adrenals. Sorry if you have

already told us this, I cannot remember each and every individual members story

and need to be reminded constantly.

Luv -

Sheila

I cant offer much by way of advice other than to reiterate what

said about the adrenals. With what I know now, I believe that

all my previous failures were direcetly caused by adrenal problems.

And if I'd known enough, or found a doc who knew enough, I probably

would have overcome this illness years ago.

Have you done the necessary adrenal testing or are you taking the

recommended adrenal supplements (HC, DHEA, NAX, etc) as appropriate to

you.

_

[Guest guest]

Thanks ,

I've resumed my previous regime, and yes I was thinking about what

else I could do to try and help myself. Trouble is, if I take any

more supplements I will start to rattle, so I'm sticking to what I

was doing before, but still don't have the energy for a short daily

walk. I'm going to take your advice and call it a 'blip' - makes me

feel better about the setback. Thanks for replying (=

P

>

......Basically all I kept on doing was what I was doing

before I hit the downer....Sounds as if it's your adrenals taking up

the slack from your little gluten error. I still find that however

well I'm doing, if I slip up somewhere I often pay for it adrenal

wise over and above anything I would expect to and for much longer

than I would have anticipated...As unhelpful as it sounds, what it

takes is patience and a return to what you were doing before that

brought the improvement. ....do whatever helps you relax and tell

yourself it's just a blip....

[Guest guest]

Hi Marie,

Gee, it sounds like you have been through hard times with your

health. I hope that you are feeling better soon. Really sorry to

hear that you had to sell your horse because of your ill health -

that is pretty sad. I love my animals and can imagine how hard it

was for you to part with your horse.

I have a lab request from the doctor for an adrenal test, so I will

get that done soon after xmas. Thanks for prompting me about that!

I will get it done.

You wrote words of wisdom when you stated, " Eventually this too will

pass " . Reminds me of the story about the emperor and the ring. I

often say those words to myself, to comfort myself. The words

relate to just about everything in life.

P

>

Yes, me too. I've had CFS for 5 years and it has totally altered my

life....In those 5 years I've had moments when I've felt like I was

finally about to beat this thing, only for it all to go belly up

again.....I cant offer much by way of advice other than to reiterate

what said about the adrenals. With what I know now, I

believe that all my previous failures were direcetly caused by

adrenal problems.....Have you done the necessary adrenal testing or

are you taking the recommended adrenal supplements.....All I can say

by way of encouragement, is nothing stays the same. Eventually this

too will pass.

[Guest guest]

Penny,

Very true!

P

.......but the real point is we're all in a better place now than we

were when we were relying on GPs who don't have the first clue how to

treat us!......Pen x

[Guest guest]

Hi Sheila,

Nice to hear from you. I doubt that it has to do with too little

thyroid replacement because I felt SO GOOD before. It felt like the

thyroid stuff was finally kicking in and working. I felt about 90%

great. Energy was great, thinking was much clearer (although memory

was still terrible) and people told me that I looked really

healthy. Everything went belly up after I ate the icecream cake

with the gluten in it. I'm not saying that I'm still being affected

by the gluten now, but I suspect that ingesting it may have set off

a bit of a chain reaction. I will have another set of lab tests

after xmas, so that might shed some light on the situation. Also

going to have adrenal testing done. I don't have any problems with

the fillers (checked this out a while back to make sure). Nobody

seems to be able to explain why I can't tolerate taking T3. I think

that might be because nobody really knows! I felt dreadful when I

took 150mcg of thyroxine (very unwell), and 125mcg seems to be

tolerated a bit better. Not sure about thyroid hormone resistance.

I have to remind myself about what that is!! Back to the books for

me!!!!

P

>

Hi Pat

Could it be that you are simply not taking enough thyroid hormone

replacement - even though you cannot tolerate any increase, this

could be a problem. You need to find the reason why you can't

tolerate T3 or an increase in T4 and take it from there. Are you

allergic to the fillers or do you have thyroid hormone resistance?

[Guest guest]

Hi Leah,

Yes, a lot of coeliacs have problems with their thyroids, so maybe

that is what Dr P was referring to. I'm not sure - just guessing that

might be what he meant. I'm going to have some more blood tests after

xmas, so hopefully I'll have more idea of what is going on inside.

P

>

......I remember Dr P mentioning something about a crossover between

allergy to wheat and damage to the thyroid. If this all worsen during

an episode when you ingested gluten, could it be that you have just

had a worsening of your thyoid condition at the same time, and nee

dmore meds?

Leah x

[Guest guest]

Thanks hon

Doc very pleasant,came out to see me, said he wasnt too worried about

my bp as it goes up and down throughout the day usually anyway, hmm. I

had to confess about the hc, he expressed concern about blood sugars,

bp, crisis if I couldn't get it, terrors of getting off it etc etc.

Said he is going to try and orchestrate some blood tests for a nurse

to come and get the blood. I said not good as I have taken my armour

today, he said my own metobolism will deal with it so it shouldn't

matter. I still think I should wait till tomorrow for them, as long as

my head isn't about to pop from a stroke I should be ok if I can keep

my sugars steady. Oh he didn't test the bs either.

Wierd about the blood sugars thing because I was already starting to

get a problem with it before I went on armour, getting confused took

me into hospital in the first place agghhh. Anyway. I had managed to

make myself feel comfortable before he arrived via eating, stress

dosing hc (thanks to Val), and armour, but I feel as though I might

have a problem I am not quite getting at, and I certainly don't think

the doc will find it. However he did say he thought from the tablets I

was on there was room for manouvre (the ones he had listed on his

list) I have no idea what he means cos I only take 3 others besides my

armour and hc and my supplements.

Anyway I digress, he didn't listen to my heart or check eyes or

anything like that lol, I kinda expected something. Just suggested

TFT, I suggested liver too as I have been getting pains over there. He

did emphasise that they have had 10 years of training during which

they learned about the dangers of steroid drugs oops. I might be in

for trouble when I get to see my own doc tomorrow if I can get there.

He never offered any ideas about the confusion nor unresponsiveness

last night. Ah well, who knows eh? At least he was pleasant.

God bless you for your advise

lotsa luv

Dawnx

[Guest guest]

Hi Hun,

You will not be able to tolerate the t3 if you have adrenal fatigue,

t3 is tough on the old adrenals see drrind website. I have adrenal

fatigue (very low cortisol conf. via ASI test) and this means my

thyroid hormones are having difficulty reaching my cells.

Also, it says in the book adrenal fatigue, if you have any

allergies to foods you need to cut those out as if you have adrenal

fatigue this will make it worse. Sugar, refined carbs such as white

rice (which rapidly turn to sugar in your body)and fruit with a high

sugar content e.g tropical fruit etc is worth avoiding. I really

reccomend the book, I got it from Library, you may be able to order

it if they do not have it in.

I cannot tolerate any more T3 than 12.5 mcg until my adrenals are

back online (cortisol raised) Hope this helps.

Incidentally I have been trying really hard to avoid certain things

out of my diet: but slipped on weds eve and had a few glasses of wine

along with a pannacotta dessert, this was the first time I had

dessert/sugar for about two months. That night I had the worst ever

nightmare, so have had my fingers burnt! And will be avoiding a load

of stuff at Crimbo.

Take care,

Love Ali xx

<patersonia@...> wrote:

>

> Hi Sheila,

> Nice to hear from you. I doubt that it has to do with too little

> thyroid replacement because I felt SO GOOD before. It felt like

the

> thyroid stuff was finally kicking in and working. I felt about 90%

> great. Energy was great, thinking was much clearer (although

memory

> was still terrible) and people told me that I looked really

> healthy. Everything went belly up after I ate the icecream cake

> with the gluten in it. I'm not saying that I'm still being

affected

> by the gluten now, but I suspect that ingesting it may have set off

> a bit of a chain reaction. I will have another set of lab tests

> after xmas, so that might shed some light on the situation. Also

> going to have adrenal testing done. I don't have any problems with

> the fillers (checked this out a while back to make sure). Nobody

> seems to be able to explain why I can't tolerate taking T3. I

think

> that might be because nobody really knows! I felt dreadful when I

> took 150mcg of thyroxine (very unwell), and 125mcg seems to be

> tolerated a bit better. Not sure about thyroid hormone

resistance.

> I have to remind myself about what that is!! Back to the books for

> me!!!!

> P