Re: Anyone felt worse on hydrocortisone?

July 7, 2011

Yeah, me:

thyroid treatment/message/69878

how much are you taking? you might not need it or you migth be taking too much.

or like the article i reference, your receptors may be too sensitive?

c

>

> Hi,

>

> Just trying to find someone else like me. I feel really lethargic, tired and

" drugged " when taking hydrocortisone, especially in the afternoon. I have tried

lots of different dosing amounts and schedules.

>

July 7, 2011

Hi Mark,I didn't feel exactly worse but also not better - which has been a surprise as everyone said I'd feel lots better on it.My experience was that for the first week I had a fraction more energy (but I think a lot of that was me feeling positive and buoyant for a change). I did feel tired - but it wasn't an unpleasant tired - it was the sort of very tired after a very long walk or physical exercise - which of course I haven't done for ages.Gradually I've gone back to being in bed all the time - I have thyroid probs too but the hc isn't doing all that it should for me - I'm seeing Dr P tomorrow and hopefully he'll shed some light on it - in which case I can tell you more at the weekend.What dose are you on?All best, Alison>

July 7, 2011

Hi

Thanks for the reply and interesting link. Are you the same who posted

this:

http://forums.realthyroidhelp.com/viewtopic.php?f=5 & t=20860

I replied there too. I was taking HC based on my saliva results:

Sample 1: 9.5 (12-22)

Sample 2: 5.0 (5.0-9.0)

Sample 3: 4.6 (3.0-7.0)

Sample 4: 1.5 (1.0-3.0)

Total Daily Cortisol: 20.6 (21-41)

I am being treated by Dr P for thyroid resistance, on T3 only. He says adrenal

insufficiency is caused mainly by hypothyroidism/thyroid resistance. I haven't

had the STIM test.

What I plan on doing is another saliva test soon, so I can determine whether or

not the HC has suppressed more than it has supplied - i.e. to see if my

symptoms are the result of lower cortisol rather than higher. Then I will be in

a better position to think about the increased receptor sensitivity stuff. Have

you ever thought of doing the same? What I don't understand is that if my cells

are more receptive then why did I not get any positive benefits??

Can I also ask how long the bad symptoms last for when you come off HC and how

you come off (i.e. taper down or just stop straight)?

Cheers,

Mark

>

> Yeah, me:

thyroid treatment/message/69878

>

> how much are you taking? you might not need it or you migth be taking too

much.

>

> or like the article i reference, your receptors may be too sensitive?

July 7, 2011

Sorry you also asked how much I was on. I have tried different doses ranging

from 5 to 35mg. Tried 47.5 on one day.

The other thing to add is have you tried absorbing through your skin instead? I

have read that this is better (with bio identical hormones) because this way

they don't pass through the liver. Potentially it could be going through the

liver that causes problems...just a thought.

Cheers,

Mark

> >

> > Hi,

> >

> > Just trying to find someone else like me. I feel really lethargic, tired and

" drugged " when taking hydrocortisone, especially in the afternoon. I have tried

lots of different dosing amounts and schedules.

> >

>

July 7, 2011

Hi Alison,

Thanks for your reply. At the moment I am down to 2.5mg, but I have been much

higher (see previous post).

Best wishes,

Mark

>

> Hi Mark,

> I didn't feel exactly worse but also not better - which has been a

> surprise as everyone said I'd feel lots better on it.My experience was

> that for the first week I had a fraction more energy (but I think a lot

> of that was me feeling positive and buoyant for a change). I did feel

> tired - but it wasn't an unpleasant tired - it was the sort of very

> tired after a very long walk or physical exercise - which of course I

> haven't done for ages.Gradually I've gone back to being in bed all the

> time - I have thyroid probs too but the hc isn't doing all that it

> should for me - I'm seeing Dr P tomorrow and hopefully he'll shed some

> light on it - in which case I can tell you more at the weekend.What dose

> are you on?

> All best, Alison

>

> >

>

July 7, 2011

No, he's a different one - we're pretty common...

Maybe you need other hormones - have you done the hertoghe questionnaire in the

files? some say dhea is needed to balance out hc, some say it's not.

suggest you do the questionnaire and see wht it shows - i'd be interested to

see. i'm wondering if other things are low now? dhea, progesterone ?

might it not be the hc that is doing this, but rather t3 only? some t4 is

needed (i would argue, others would argue not) for brain functions. perhaps you

need some t4? have you thought about that? when i tried t3, i felt hit by a

truck, actually made me sleep at 10am for hours.

if money is no object can you get a 24 hr urinary free cortisol? that'll show

you how much over 24 hrs, not just at different times. also i wonder what your

cbg levels are like - if it's high yo'll have low free cortisol, if low, high

free cortisol with small doses? (another thought)

>> Can I also ask how long the bad symptoms last for when you come off HC and

how you come off (i.e. taper down or just stop straight)?

do you mean thatyou feel crap now and are thinking of coming off and wonder how

long it'd take to feel better to see if iti s the HC? For me i felt beter in a

few days. but, i can now tolerate 20-30mg no problem. too much and too

little are said to cause problems.

that was my point - i felt bad at first, came off it in a few days, a month or

so later stopped taking it then i could tolerate it and it made me feel better.

something else was going on, dunno what - receptors? thyroid?

who knows really?

>

> Hi

>

> Thanks for the reply and interesting link. Are you the same who posted

this:

>

July 7, 2011

so none of these doses have made you feel better? (what does that tell you?

it's not needed or you need something else too, or something else is making you

feel bad not hc?), or if you did feel better on a certain dose of hc, what dose

was that? higher or lower?

i'm guessing you started hc just before t3 - is it hc or t3 making you feel bad

- objectively? (see previous reply)

what else has made you feel better/worse, previously? perhaps you have a

vit/min deficiency or other hormone deficiency ? what have you checked

previously?

you say you feel worse in the afternoon? what might be causing that?

hmmm do you think the skin thing is relevant ? you've tried 5-47.5 mg a day, do

you really think it's an absorptioin / liver issue? it could be but (don't

discount it) i'd have thought you'd get some benefit from 47.5mg in a day at

least briefly? you can take hcl /betaine to get better absorpbion of HC, have

you tried that? (see stop thyroid madness website). i tried hc cream before,

don't know if it worked or not. just over the counter stuff...

some drs would never put people on hc without putting them on dhea, too, to

counter it's effects (i'm on 37.5mg dhea), some people think that lowers

cortisol to put you on dhea....

47.5 mg is also i think too high a dose (my non qualified opinion tho i briefly

went higher, when ill) mind you i also was on 40mg for a while but when i took

something for gut problems (slippery elm, glutamine) i came right down to 30mg i

think. NHS physiological replacemnt dose for suspected addisons was 30mg a day,

for me at 19st. too much isn't good eithr...

i always remember the prhase 'push where it moves' as a way of finding what's

working (it's not instant of course) - is it moving at the moment when you push?

if not, where else can you push? is it wise to keep pushing harder in the same

place? (though i hear t3 resistance can take some time to resolve, but what if

that isn't the problem or only problem?) do you need something else, does t4 do

anything, say? do you have low testosterone symptoms, say?

it could be more than just two things at work here - hc and thyroid - what else

do your symptoms match

also suggest speaking to dr peatfield to see what he thinks.

i never got t3 to work for me, felt dreadful on it, mentally as much as

anything. t4, surprisingly, helped my mood and fatigue. just trying to ask

some diffferent questions to see what else might be going on.

C

>

> Sorry you also asked how much I was on. I have tried different doses ranging

from 5 to 35mg. Tried 47.5 on one day.

>

July 8, 2011

i sent another reply to, it doesn't seem to have come through

chris

>

> No, he's a different one - we're pretty common...

>

> Maybe you need other hormones - have you done the hertoghe questionnaire in

the files? some say dhea is needed to balance out hc, some say it's not.

>

> suggest you do the questionnaire and see wht

July 8, 2011

2.5! That's fantastic. Did you manage to lower easily? How long did it take?Alison>> Hi Alison,> > Thanks for your reply. At the moment I am down to 2.5mg, but I have been much higher (see previous post).

July 8, 2011

Hi Mark,

Look on the Stop the Thyroid Madness site. There is advice for taking HC there.

I think the general wisdom in this area is that men need around 35mg per day and

that it is better to start on a full replacement dose rather than build up. I

did it by building up and started feeling really bad around 20 mg. My adrenals

had stopped making cortisol because there was a lot in my blood stream but I

hadn't reached optimum dosage, so there was a shortfall of about 5 mg. Have you

tried taking Celtic Sea Salt as well as HC?

MacGilchrist

>

> >

July 8, 2011

also

maybe you don't need HC? if it's not making you feel better but worse?

chris

July 8, 2011

Even on T3 chris your body still produces some T4, im on 125mcg of T3 and my

body still produces a FT4 of 4 (11-22)

Steve

> might it not be the hc that is doing this, but rather t3 only? some t4 is

needed (i would argue, others would argue not) for brain functions. perhaps you

need some t4? have you thought about that? when i tried t3, i felt hit by a

truck, actually made me sleep at 10am for hours.

July 8, 2011

yes but the point is that such a low level may not be sufficient!

don't throw the baby out with the bathwater!

>

> Even on T3 chris your body still produces some T4, im on 125mcg of T3 and my

body still produces a FT4 of 4 (11-22)

>

> Steve

>

July 8, 2011

Hi Chris>> No, he's a different one - we're pretty common...> > Maybe you need other hormones - have you done the hertoghe questionnaire in the files? some say dhea is needed to balance out hc, some say it's not.Yeah I just did that questionnaire and came up possible/probable in every one (but one), so it isn't that helpful for me and I think I'm gonna have to get some more blood tests done. Interesting what you say about DHEA as obviously I am low on that too and initially I did supplement with it, and I didn't feel as bad as I do now. Trouble is the NTHAdrenals people say not to, as you know...> > suggest you do the questionnaire and see wht it shows - i'd be interested to see. i'm wondering if other things are low now? dhea, progesterone ?> > might it not be the hc that is doing this, but rather t3 only? some t4 is needed (i would argue, others would argue not) for brain functions. perhaps you need some t4? have you thought about that? when i tried t3, i felt hit by a truck, actually made me sleep at 10am for hours.Pretty sure it's not the T3 because it started before I started T3. I just happened to have a T4 blood test done and the result was 17.1 pmol/l (12.0 - 22.0) so clearly I still have enough (only been on T3 for 3 weeks). It is interesting what you say though about being hit by a truck, maybe the T3 is only making things worse as I am certainly not improving after having come down to 2.5mg HC. What did Dr P say about your reaction to T3 ?> > if money is no object can you get a 24 hr urinary free cortisol? that'll show you how much over 24 hrs, not just at different times. also i wonder what your cbg levels are like - if it's high yo'll have low free cortisol, if low, high free cortisol with small doses? (another thought)Yeah I will have to spend some money to figure this out but I will start with a saliva test (got the kit today, probably spit Monday/Tues).> >> Can I also ask how long the bad symptoms last for when you come off HC and how you come off (i.e. taper down or just stop straight)?> > do you mean thatyou feel crap now and are thinking of coming off and wonder how long it'd take to feel better to see if iti s the HC? YesFor me i felt beter in a few days. but, i can now tolerate 20-30mg no problem. too much and too little are said to cause problems.> > that was my point - i felt bad at first, came off it in a few days, a month or so later stopped taking it then i could tolerate it and it made me feel better. something else was going on, dunno what - receptors? thyroid?interesting, cheers.> who knows really? >

July 8, 2011

maybe it is that simple but my saliva results suggest I do!

>

> also

>

> maybe you don't need HC? if it's not making you feel better but worse?

>

> chris

>

July 8, 2011

> so none of these doses have made you feel better?no (what does that tell you? it's not needed or you need something else too, or something else is making you feel bad not hc?), or if you did feel better on a certain dose of hc, what dose was that? higher or lower?> > i'm guessing you started hc just before t3 - is it hc or t3 making you feel bad - objectively? (see previous reply)started about 25 days before T3, so I know it was the T3. But the T3 could be the reason I'm not getting better I suppose..> what else has made you feel better/worse, previously? perhaps you have a vit/min deficiency or other hormone deficiency ? what have you checked previously?just got my ferritin results today and they are low, will make a post about it and my other tests further down.> you say you feel worse in the afternoon? what might be causing that?on the NTHAdrenals lots of people complain of afternoon fatigue so I thought that backed up the idea it was a cortisol thing> hmmm do you think the skin thing is relevant ? you've tried 5-47.5 mg a day, do you really think it's an absorptioin / liver issue? it could be but (don't discount it) i'd have thought you'd get some benefit from 47.5mg in a day at least briefly? you can take hcl /betaine to get better absorpbion of HC, have you tried that? (see stop thyroid madness website). i tried hc cream before, don't know if it worked or not. just over the counter stuff...don't think it's an absorption issue, but it could potentially be a lover issue. One way to find out is to try the cream, but first I need to get back to "normal" (as in normally fatigued).> some drs would never put people on hc without putting them on dhea, too, to counter it's effects (i'm on 37.5mg dhea), some people think that lowers cortisol to put you on dhea....Thanks interesting. I met a guy on a CFS forum who said he accidentally went up to 150mg DHEA one day and felt amazing. He's been on it ever since and it's the only hormone he takes.> 47.5 mg is also i think too high a dose (my non qualified opinion tho i briefly went higher, when ill) mind you i also was on 40mg for a while but when i took something for gut problems (slippery elm, glutamine) i came right down to 30mg i think. NHS physiological replacemnt dose for suspected addisons was 30mg a day, for me at 19st. too much isn't good eithr...> > i always remember the prhase 'push where it moves' as a way of finding what's working (it's not instant of course) - is it moving at the moment when you push? if not, where else can you push? is it wise to keep pushing harder in the same place? (though i hear t3 resistance can take some time to resolve, but what if that isn't the problem or only problem?) do you need something else, does t4 do anything, say? do you have low testosterone symptoms, say?think I need a testosterone blood test. but this came on suddenly after starting the HC.> > it could be more than just two things at work here - hc and thyroid - what else do your symptoms match> > also suggest speaking to dr peatfield to see what he thinks. I mentioned it to him on our phone check up and he basically said don't worry everyone responds differently. > i never got t3 to work for me, felt dreadful on it, mentally as much as anything. t4, surprisingly, helped my mood and fatigue. just trying to ask some diffferent questions to see what else might be going on.> > CCheers

July 8, 2011

Cheers Alison, would be great to hear back on what Dr P has to say.