Re: Have I stopped my T4 for too long?

[Guest guest]

Hi

You certainly dont need to stay off T4 for 4 weeks before starting HC, I stayed off mine for 9 days, then started the HC for 2 weeks on its own and have just re started the T4 at a lower dose than before, in total I was off the T4 for 3 weeks. You will be feeling pretty awful, I was ok for most of the time I was off it because we still have some T4 in our blood and its half life is long but eventually and even now I felt not right and have/had symptoms returning. Dr P will tell you to take HC for 2 weeks before restarting the T4, this is to avoid any thyroid dump from quick conversion that HC can induce, didnt happen to me, you may find you dont need as muchT4 while you are taking HC--- On Thu, 4/9/08, janemccormicksmith <cordeliajane@...>

....Or not long enough? I have been off T4 for around four weeks now,excluding a three day window where I went back on it (that was 20 daysago).I have been taking NAE and I am going to start on HC. Can anyone advise please?Thanks, Jane

[Guest guest]

Are you intending to take the corlan pellets for a while or have you ordered some proper HC and just using the pellets as a stop gap?--- On Thu, 4/9/08, janemccormicksmith <cordeliajane@...>

....Or not long enough? I have been off T4 for around four weeks now,excluding a three day window where I went back on it (that was 20 daysago).I have been taking NAE and I am going to start on HC. I thought I read here that I need to stay off T4 for six weeks beforestarting HC but I can't find the post where I read that now.Can anyone advise please?Thanks, Jane

[Guest guest]

Hi ,

Thanks for your reply. I thought it was in a post from Sheila that I

read stay of T4 for six weeks before starting HC.

I was happy to stop my T4 in fact because I had decided it wasn't

working as it should. I even feared that it might be doing me more

harm that good as I didn't seem to be converting it properly.

Now I have been off it for a while I can see that it was doing some

good because I have become a wreck without it.

I need to start HC so I can plan to get back on the T4 in two weeks.

Thanks again for replying.

Jane

>

> Hi

> You certainly dont need to stay off T4 for 4 weeks

[Guest guest]

Hi again,

I was hoping to get the corlan pellets to make a start this week but

my local chemist hasn't been able to get them. I will try Boots or

something. I was going to use them for a start then order some HC

online.

I saw a lot of suggestions about where to buy HC online. I was going

to leave it for the weekend to dredge up the posts with different

suggestions on and make an order. Maybe I should do it now. In fact I

am going to do it now.

Thanks again

Jane

Are you intending to take the corlan pellets for a while or have you

ordered  some proper HC and just using the pellets as a stop gap?

>

[Guest guest]

No I am pretty sure you dont need to be off it for 6 weeks, I certainly wasnt. Sheila may have been refering to stopping HC for 6 weeks before having an adrenal profile done, you may have mixed things up a bit. She may be along soon anyway to clarify

Hi ,Thanks for your reply. I thought it was in a post from Sheila that I read stay of T4 for six weeks before starting HC.I was happy to stop my T4 in fact because I had decided it wasn't working as it should. I even feared that it might be doing me more harm that good as I didn't seem to be converting it properly. Now I have been off it for a while I can see that it was doing some good because I have become a wreck without it.I need to start HC so I can plan to get back on the T4 in two weeks.Thanks again for replying.Jane>> Hi> You certainly dont need to stay off T4 for 4 weeks

[Guest guest]

I would get it ordered now, took ten days for mine to arrive from international pharmacys in the US, not sure you should take corlan pellets for that long--- On Thu, 4/9/08, janemccormicksmith <cordeliajane@...>

Hi again,I was hoping to get the corlan pellets to make a start this week but my local chemist hasn't been able to get them. I will try Boots or something. I was going to use them for a start then order some HC online. Thanks againJaneAre you intending to take the corlan pellets for a while or have you ordered some proper HC and just using the pellets as a stop gap?>

[Guest guest]

Thanks , I just went and hastily ordered some HC from

International Pharmacy, then realised I could have ordered some

Westhroid or something at the same time to save on shipping costs.

I should have thought of that before I ordered, instead of immediately

after. I am just not with it at the moment.

I have been meaning to order some glandular extracts because I expect

to switch from T4 to Armour/Westhroid (or one of them) in due course.

Anyway I am glad to have placed an order for HC. I feel a bit better

already.

Thanks again for all your help.

Jane

> No I am pretty sure you dont need to be off it for 6 weeks

[Guest guest]

Hi Jane

I think you might be getting mixed up with our recommendation that you stay of HC for 6 weeks before having a 24 hour salivary adrenal test profile done, or the synacthen test. Remember that you should stop your thyroiod hormone replacement for at least 24 hours before having your blood drawn.

Corlan pellets are used for mouth ulcers, so you shouldn't ahve trouble finding some, and you should be OK to start taking them this weekend.

Luv - Sheila

I thought I read here that I need to stay off T4 for six weeks beforestarting HC but I can't find the post where I read that now.My local chemist is having trouble getting corlan pellets but if I canget them somewhere else would it be ok to start taking them this weekend?I am feeling pretty awful and I feel like I should be taking one thingor another.I have got my first appointment with Dr P on 18th Sept (two weeks fromnow) and I have got a blood test scheduled for 10 Sept as apre-screening to see another NHS endo.Can anyone advise please?Thanks, Jane

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[Guest guest]

Can't you cancel the order Jane and start again.

Luv - Sheila

Thanks , I just went and hastily ordered some HC from International Pharmacy, then realised I could have ordered some Westhroid or something at the same time to save on shipping costs. I should have thought of that before I ordered, instead of immediately after. I am just not with it at the moment. I have been meaning to order some glandular extracts because I expect to switch from T4 to Armour/Westhroid (or one of them) in due course.Anyway I am glad to have placed an order for HC. I feel a bit better already.Thanks again for all your help.Jane> No I am pretty sure you dont need to be off it for 6 weeks

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[Guest guest]

Hi Sheila,

There wasn't an easy way of cancelling it - I would have had to email

them and possibly wait for their reply and it was already past my

bedtime and I was too tired to cope with anything more.

Also I didn't want to risk causing a delay the delivery of my HC so I

just decided to leave it.

I haven't seen Dr P yet so I don't know what he will recommend so

might

be best to wait and see anyway.

By the way, will it be ok to use Corlan Pellets for the several days

until my HC arrives? Is there some reason to limit the amount of time

on Corlan Pellets (other than cost)?

Jane

>

> Can't you cancel the order Jane and start again.

>

> Luv - Sheila

[Guest guest]

Hi Shelia,

I am planning to start my HC in the form of Corlan Pellets and then the

proper HC when it arrives, so by the time my blood test comes around

(in five days) I will have been off my thyroxine for several weeks.

I hope this means I will get a meaninful result.

Jane

Remember that you should stop your thyroiod hormone replacement for at

least 24 hours before having your blood drawn.

[Guest guest]

I personally can't see a reason why you shouldn't use the Corlan pellets until your HC arrives, as they sold without prescirption for mouth ulcers etc.

Luv - Sheila

By the way, will it be ok to use Corlan Pellets for the several days until my HC arrives? Is there some reason to limit the amount of time on Corlan Pellets (other than cost)?Jane>

..

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[Guest guest]

Hi Jane

Dr P told me to take the HC on its own for at least 2 weeks and thats what I did, I am back on the thyroxine now but feel all my old hypo symptoms are back, bloated painful stomach, anxiety, depressed mood sometimes and generally think why did I bother stopping the T4 when infact I feel worse for doing it and the HC hasnt made a great deal of difference?

I now feel daunted at the fact that I am only on 50mcg of T4 and feel like I am starting all over again with it and have to wait inbetween dose increase. I am on 15mg of HC but you can go higher depending on how you feel, I personnaly dont want to go above 20mg, but sometimes I feel like its not helping and want to stop it. I dont think taking one or two doses of T4 will help you or make any difference, and remember when you do go back on it you must start at a lower dose than what you were on. I was on 150mcg and personally think I have started back too low.--- On Sat, 6/9/08, janemccormicksmith <cordeliajane@...>

Hi Sheila,I am really feeling the lack of T4 now and I'm wondering if I havedone myself a mischief by stopping it for so long (four weeks). I havebeen getting the heart racing thing again which has made me wonder ifmy adrenals might be suffering from the lack of TH. That would beironic as my aim is to try to support my adrenals at the moment. Alsoextreme fatigue constipation anxiety all very bad.I am still taking the NAE between 3-5 a day.Jane

[Guest guest]

HI Jane

Did you speak with the pharmacist where you bought your Corlan pellets and tell him your intended plan of action to use them to boost your adrenals. I know nothing about Corlan pellets and wonder why, if there is 2.5mg of HC in each tablet that they are available over the counter. I have said before I know little regarding HC therapy, I can post the papers about dosing with NAE, Isocort, and all the various forms of HC, but not about Corlan. You can read about Corlan pellets here http://www.netdoctor.co.uk/medicines/100000608.html

It is recommended people stay off thyroid hormones as long as possible before they have the 24 hour salivary test to get a true reading, but not to stay off them for 6 weeks before actually starting treatment. I see no reason why you should not start back on your L-thyroxine immediately as you are now getting back your hypo symptoms. I thought we had sorted this the other day.

Any form of HC therapy should be undertaken with a medical practitioner, and you must not go ahead on your own to increase the Corlan Pellets "a bit faster" in the belief that you will get the effect faster. Remember, these tablets were designed for specific mouth ulcers only . Anyway, only 2 weeks to see Dr P.

Luv - Sheila

In two weeks it will be time for my appointment with Dr P.Should I really not take *any* T4 while I take HC? I wonder if takinga little bit might make me feel better.I am still taking the NAE between 3-5 a day.Jane

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[Guest guest]



Hi

As you were taking 150 mcgs L-thyroxine before, I see no reason not to increase it by another 25 mcgs up to 75 mcgs. You need to get your thyroid hormones back to where they were as soon as possible. If you have any adverse effects, then you can drop back again, but I honestly doubt it.

Luv - Sheila

I now feel daunted at the fact that I am only on 50mcg of T4 and feel like I am starting all over again with it and have to wait inbetween dose increase. I am on 15mg of HC but you can go higher depending on how you feel, I personnaly dont want to go above 20mg, but sometimes I feel like its not helping and want to stop it. I dont think taking one or two doses of T4 will help you or make any difference, and remember when you do go back on it you must start at a lower dose than what you were on. I was on 150mcg and personally think I have started back too low.

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[Guest guest]

Yes I am thinking of doing that soon Sheila, maybe after a week on 50mcg?--- On Sun, 7/9/08, sheilaturner <sheilaturner@...>

 Hi

As you were taking 150 mcgs L-thyroxine before, I see no reason not to increase it by another 25 mcgs up to 75 mcgs. You need to get your thyroid hormones back to where they were as soon as possible. If you have any adverse effects, then you can drop back again, but I honestly doubt it.

Luv - Sheila

I now feel daunted at the fact that I am only on 50mcg of T4 and feel like I am starting all over again with it and have to wait inbetween dose increase. I am on 15mg of HC but you can go higher depending on how you feel, I personnaly dont want to go above 20mg, but sometimes I feel like its not helping and want to stop it. I dont think taking one or two doses of T4 will help you or make any difference, and remember when you do go back on it you must start at a lower dose than what you were on. I was on 150mcg and personally think I have started back too low.

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[Guest guest]

Hi Sheila,

Thanks for your reply. I'm a bit mixed up at the moment, and it is

entirely my fault for thinking I had to stay off Thyroxine for six

weeks before starting HC. That is where it all went wrong.

I thought I had straightened it out now, though, and I was under the

impression that I needed to stop my thyroxine while starting adrenal

support and in addition to that to stop adrenal support prior to

taking the saliva test. I didn't understand that I needed to stop my

thyroxine prior to taking the saliva test. As it happens I had stopped

it, with view to commencing NAE, but then went back on it for a few

days before the test.

I am wondering if when you said " It is recommended people stay off

thyroid hormones as long as possible before they have the 24 hour

salivary test to get a true reading " did you mean adrenal support

rather than thyroid hormones? I suspect it doesn't matter as my

adrenal results came back drastically low anyway.

As for the corlan pellets, they are only for sale when they have been

recommended by a practitioner but in fact they didn't ask when I

bought them. I didn't discuss what I was planning to use them for

because I suspected they might not want to sell them to me under those

circumstances and having read the patient information leaflet I think

I was right about that.

Reading what has written it sounded to me like HC should not be

taken at the same time as thyroxine but again I think I have got the

wrong end of the stick there too, in spite of having read Dr P's book

as well.

I think in fact that one is advised to stay off thyroxine for a while

before starting HC in order to avoid getting a sudden conversion. I

don't think I am in danger of that happening because I have been off

it for so long. Nevertheless I agree with what you say that HC dosing

should be supervised so I won't be increasing the pellets or starting

on the proper HC I have ordered until I see Dr P.

I got my questionnaire in the post from him today (well it must have

been delivered yesterday but I only checked the post today).

I am still taking the NAE.

I will keep you posted.

Jane

[Guest guest]

OMG! Did I actually say that, why didn't somebody pull me up at the time ( I cannot imagine how I wrote that apart from being in cloud cuckoo land! I would have meant to say "...before they have their thyroid function tested. I would not have meant the 24 hour adrenal because that needs your NAE stopping for at least a week before the test, or at least 6 weeks if you are taking Hydrocortisone before that test.

Was this written in a message on the forum or is it in one of the documents in the files on the forum?

I offer my sioncerest apologies if this was the case.

One should stay off thyroid hormone replacement when starting using HC for at least a couple of weeks to boost your adrenals before starting them again slowly.

Luv - Sheila

I am wondering if when you said "It is recommended people stay offthyroid hormones as long as possible before they have the 24 hoursalivary test to get a true reading" did you mean adrenal supportrather than thyroid hormones? I suspect it doesn't matter as myadrenal results came back drastically low anyway.As for the corlan pellets, they are only for sale when they have beenrecommended by a practitioner but in fact they didn't ask when Ibought them. I didn't discuss what I was planning to use them forbecause I suspected they might not want to sell them to me under thosecircumstances and having read the patient information leaflet I thinkI was right about that.Reading what has written it sounded to me like HC should not betaken at the same time as thyroxine but again I think I have got thewrong end of the stick there too, in spite of having read Dr P's bookas well. I think in fact that one is advised to stay off thyroxine for a whilebefore starting HC in order to avoid getting a sudden conversion. Idon't think I am in danger of that happening because I have been offit for so long. Nevertheless I agree with what you say that HC dosingshould be supervised so I won't be increasing the pellets or startingon the proper HC I have ordered until I see Dr P. I got my questionnaire in the post from him today (well it must havebeen delivered yesterday but I only checked the post today).I am still taking the NAE.I will keep you posted.Jane

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[Guest guest]

Hi Jane

I havent/didnt experience the 'thyroid dump' and I stayed off thryoid meds for 9 days before starting HC and 2 weeks while I just took the HC, in total I was off thyroid meds for 3 weeks. I started back on 50mcg of thyroxine last wed night, I now think I could have started back on more because a lot of my old hypo symptoms are back now, tearful, tired and if I didnt know better I would think I was depressed, I never wanted to feel like this again but I am afraid its back.--- On Sun, 7/9/08, sheilaturner <sheilaturner@...>

Luv - Sheila

I am wondering if when you said "It is recommended people stay offthyroid hormones as long as possible before they have the 24 hoursalivary test to get a true reading" did you mean adrenal supportrather than thyroid hormones? I suspect it doesn't matter as myadrenal results came back drastically low anyway.As for the corlan pellets, they are only for sale when they have beenrecommended by a practitioner but in fact they didn't ask when Ibought them. I didn't discuss what I was planning to use them forbecause I suspected they might not want to sell them to me under thosecircumstances and having read the patient information leaflet I thinkI was right about that.Reading what has written it sounded to me like HC should not betaken at the same time as thyroxine but again I think I have got thewrong end of the stick there too, in spite of having read Dr P's bookas well. I think

in fact that one is advised to stay off thyroxine for a whilebefore starting HC in order to avoid getting a sudden conversion. Idon't think I am in danger of that happening because I have been offit for so long. Nevertheless I agree with what you say that HC dosingshould be supervised so I won't be increasing the pellets or startingon the proper HC I have ordered until I see Dr P. I got my questionnaire in the post from him today (well it must havebeen delivered yesterday but I only checked the post today).I am still taking the NAE.I will keep you posted.Jane

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[Guest guest]

Hi Sheila,

Yes, I copied and pasted that from your reply to this thread sent at

9.11am today (message no 21065).

Its been a very difficult decision to make but I have decided to

abandon my attempt to treat myself with HC for now and start back on

thyroxine. I expect that Dr P will advise HC when I see him in two

weeks, and I will pause my thyroxine for however long he recommends at

that time.

I feel quite relieved to be going back on thyroxine after so long

without it.

I have got a holiday planned in several weeks time (like ) but I

am thinking hard about whether now is really a good time to be

planning a holiday. Maybe I should wait until my treatment plan is

sorted out first. I haven't booked my flights or anything so I can put

it off.

Don't worry about the mix up.

Jane

>

> OMG! Did I actually say that, why didn't somebody pull me up at the

time ( I cannot imagine how I wrote that apart from being in cloud

cuckoo land! I would have meant to say " ...before they have their

thyroid function tested. I would not have meant the 24 hour adrenal

because that needs your NAE stopping for at least a week before the

test, or at least 6 weeks if you are taking Hydrocortisone before that

test.

[Guest guest]

Hi Jane

Are you going back on your old dose of thyroxine or re starting low and building up again.

I hope I havent put you off the HC? I have been having periods of a racing pulse and am wondering if its the reintroduction of the thyroxine or just plain old anxiety, I dont think I am going to go up on the HC and stick at 15mg. Like you I am/was desperate to have this sorted before I go away and in someways wish I had postponed things until after my holiday--- On Sun, 7/9/08, janemccormicksmith <cordeliajane@...>

Hi Sheila, Yes, I copied and pasted that from your reply to this thread sent at9.11am today (message no 21065).Jane>> OMG! Did I actually say that, why didn't somebody pull me up at thetime ( I cannot imagine how I wrote that apart from being in cloudcuckoo land! I would have meant to say "...before they have theirthyroid function tested. I would not have meant the 24 hour adrenalbecause that needs your NAE stopping for at least a week before thetest, or at least 6 weeks if you are taking Hydrocortisone before thattest.

[Guest guest]

Hi ,

Its been a tricky weekend for making decisions, we have decided to put

off going on holiday until November.

You haven't put me off HC, I think I was just feeling cautious about

treating myself without any supervision.

I think I will wait until after my blood tests (which are scheduled

for Wednesday) to restart my thyroxine. I am feeling quite indecisive

at the moment, I may still change my mind again.

Thanks for keeping in touch,

Jane

>

> Hi Jane

> Are you going back on your old dose of thyroxine or re starting low

and building up again.

> I hope I havent put you off the HC?

[Guest guest]

Hi Jane

I totally understand where you are coming from, I am thinking of reducing my HC to 10mg a day and see if that makes me feel any better, something isnt right, I have high anxiety, tiredness and feel low and totally fed up with it all. My chest feels heavy and I have a racing pulse sometimes, it may just be the reintroduction of the thyroxine and it needs to settle but I just dont know, I really wish I did. I just want some relief, nothing I do seems to work and I just worry and worry and worry and spend all my time looking for answers and to be honest it wears me out--- On Sun, 7/9/08, janemccormicksmith <cordeliajane@...>

Hi ,Its been a tricky weekend for making decisions, we have decided to putoff going on holiday until November.Thanks for keeping in touch,Jane>> Hi Jane> Are you going back on your old dose of thyroxine or re starting lowand building up again.> I hope I havent put you off the HC?

[Guest guest]

, I am the same! Its the anxiety in overdrive.

I trust that we will both get better, with our adrenal support and our

thyroxine or armour or whatever we end up on. It just takes quite a

long time and we are both impatient because we have been ill for some

time already.

I am still in two minds about what to do and the indecision is exhausting.

Jane

I just worry and worry and worry and spend all my time looking for

answers and to be honest it wears me out

>

>

>

[Guest guest]

Its horrid isnt it? I have just had to put the laptop down and try and relax and not think anything else, even nodded off for a few mins, the worry is exhausting. Its 2 yrs since I was diagnosed and these last few days have reminded me how I felt before I was diagnosed and I never wanted to feel like that again, it has to be because I stopped the T4 for too long, I sometimes feel like giving in but I know I cant--- On Sun, 7/9/08, janemccormicksmith <cordeliajane@...>

, I am the same! Its the anxiety in overdrive.I am still in two minds about what to do and the indecision is exhausting.JaneI just worry and worry and worry and spend all my time looking foranswers and to be honest it wears me out> > >