Re: Re: self-med tap/carb etc

[Guest guest]

Hello - thank you so much for your thoughtful reply. I'm in the situation

where I think that starting ATDs now means the same as it did back at the

beginning when first diagnosed, and I'm starting all over again - only this time

I'm much better informed - so it's not a case of off and on and off... I spent

months weaning off ATDs and have been off them completely for a few months now

and now I've gone hyper again. I daren't go to the doc or the endo - I don't

want them to know I've gone hyper again or I'll come under a lot of pressure to

go the RAI route and I'm not going to do that - I have no intention of giving

myself the stress of dealing with their problems.

I obviously weaned off too early but I was hypo all the time even on the tiniest

amount of ATD so I thought it was safe. There is nowhere that I know of to get

TSI testing here (UK).

I've been dithering for some time about whether I'm actually hypo or hyper but

suddenly I know I'm hyper because of breathlessness, head thumping and the type

of bad temper I'm in... - not too mention strange wrist pains which may indicate

carpel tunnel.

I don't think that other things have come into play here. I had my menopause

very suddenly as a I had a total hysterectomy in 1997 and I'm not on HRT. (I

don't like to think that my binge-out on chocolate, cakes and heaven knows what

evil stuff last week is responsible for this (I'm thinking it's more of a

symptom than a cause), but I'm definitely going to be a great deal more

disciplined this time around about my lifestyle. Although I have to say that I

am a lot more laid back about things now than I have been in my entire life -

because I've been trying hard to be like that since diagnosis.)

I shall try to get tests done when I can but it's not easy here to do that - and

it is quite expensive. But I have to do something before then to make myself

feel better so I have started back, today, on the Carbimazole 2.5mg twice a day

and a mug of bugleweed tea. I have been wondering whether I should start on a

higher dose than that and reduce after a couple of days, but shall stick with

this for the time being unless someone comes on with a good reason to up it in

the first instance.

Again, thank you very much for your reply.

Re: self-med tap/carb etc

Hi :

There was a period of time where I tried to modulate my own ATD

dosage. What I learned was that although I did ok with small

incremental lowering of my dosage at the tail end of being hyper, once

I was in normal range, going on and off would actually make the

situation worse for me - it got really confusing.

I would definitely get labs before going on ATDs again. The times

that I was feeling hyper were not actually because my thyroid levels

were off, sometimes it was because of my menopausal fluctuations, and

sometimes just stress and anxiety, and dosing myself with PTU actually

made me hypo. It may be worthwhile for you to run a full hormone

panel if you are pre-menopausal.

I have found that in those times where I feel very hyper (fast resting

heartrate, hyper-emotional, jittery, lack of focus, fast digestion,

heat, etc.,), taking small and short doses of a beta blocker could

solve the problem quickly. I checked with my endo and she said that

was ok to do, but I do it very rarely and carefully.

Once I was off ATDs because my levels were normal (not borderline

normal, really well within range), there were and still are a lot of

lessons to learn about monitoring how I feel and checking that against

labs - one without the other is too uncertain in my case.

If your labs are hyper or borderline hyper, there may be a case for

starting the ATDs again, but if you decide to do so, it would be good

to do labs first, and then be regular and precise in the dosage,

giving it time to work before changing it, otherwise it can be a bit

of a mess. The lab results should give you an indication of dosage,

which you could decide with your doctor, and monitor with frequent lab

tests. With PTU, keep an eye out for a rash, which could indicate a

problem with the meds.

Have you tried other things to change how you feel, such as exercise

like yoga, meditation, adjusting your diet (more cruciferous

vegies, less sugar, carbs and stimulants), herbs (I like lemon balm

tea)? If the hyperness is more emotional, sometimes I still take an

anti-anxiety med.

Good luck,

I've been off ATDs for a few months and had thought I was still hypo,

but have now decided I'm hyper and need to start ATDs again - do you

start with a small, divided dose?

[Guest guest]

> I don't think that other things have come into play here. I had my

> menopause very suddenly as a I had a total hysterectomy in 1997 and

> I'm not on HRT.

Then I would definitely get labwork done. If you do have any sort of

hyperthyroidism that could lead to bone loss, exacerbated by not having

whatever bone protection HRT offers. Or are you on any medication for

your bones? And do you take a lot of good calcium?

The symptoms I had my first year off ATDs weren't as clearcut as yours;

still I got bloodwork done every 2/3 months since I was so nervous about

whatever symptoms I did have - excessive, deep sleep (for a few weeks

following the production of a happy, though stressful, family gathering),

insomnia, weight gain (along with a glucose tolerance test). Yet my

levels were amazingly stable and healthy throughout.

Take care, Fay

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[Guest guest]

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Alison wrote:

>

> I daren't go to the doc or the endo - I don't want

> them to know I've gone hyper again or I'll come under a lot of

> pressure to go the RAI route and I'm not going to do that - I have no

> intention of giving myself the stress of dealing with their problems.

Hi ,

I know this doctor/patient thing can be trying, but as I've said before

I think it important to have a properly qualified observer, even if they

aren't terribly involved in your treatment.

It's all too easy with thyroids to blame everything on the thyroid, and

assume every time you feel ill it is the thyroid levels, but this isn't

always the case, and your GP needs as complete a picture as you can give

him.

> I've been dithering for some time about whether I'm actually hypo or

> hyper but suddenly I know I'm hyper because of breathlessness, head

> thumping and the type of bad temper I'm in... - not too mention

> strange wrist pains which may indicate carpel tunnel.

Now for me carpal tunnel is hypo, everytime, symptoms can be so fickle.

Simon

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[Guest guest]

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Alison wrote:

>

> There is nowhere that I know of to get TSI testing here (UK).

Did you ask if the local pathology department the NHS uses does private

testing. I've heard of this mentioned in places, and given the current

state of the NHS I can believe it would work, but probaby depends on

whether the lab is state owned or not.

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[Guest guest]

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Aldyth Rae wrote:

>

> I'm probably showing my terrible ignorance here about antibodies,

which I'm still embarrassingly ignorant about.....but they said at my

local hospital lab that they do TRAb and not TSI, would this be worth

having done I wonder?

Yes, it is the same test as far as I can ascertain. I don't know what

the results look like for the TRAb test, I assume the antibodies are

broken down by type.

> The Endo I saw last week said that antibodies don't play any part in

Graves after it has been triggered, thereafter it is a thyroid problem.

So I guess I can't rely on him to give into any pressure from me to

have my anitbodies tested. Have to find another route.

If that is really what he said I think a new endo might be a more urgent

requirement.

There are some arguments for not testing antibody levels regularly,

mainly because we don't know how to adjust treatment in the light of the

results, the main exceptions being to confirm diagnosis, and more

controversially on deciding whether to withdraw antithyroid drugs.

If the results of a test won't alter your treatment, then save your money.

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[Guest guest]

Thanks for your thoughts, Fay. Ref bones - I take calcium and try to exercise

regularly (not always successful) and watch my diet (most of the time). I think

the thing is that a couple of symptoms that I associate only with hypER as

against hypO became quite alarming ie the breathlessness and head thumping.

Anyway, I have started back on Carbimazole 2.5mg twice a day and 1 mug of

bugleweed tea daily and will get labs done when I can. I'm fairly happy that

I'm doing the right thing - after all, I've now spent a couple of years trying

hard to listen to my body and get to know it well - but I will get labs soon -

trouble is that I can't get them done through the 'proper' channels and getting

them done elsewhere is a hassle - an expensive hassle, too. Thanks again.

Re: Re: self-med tap/carb etc

> I don't think that other things have come into play here. I had my

> menopause very suddenly as a I had a total hysterectomy in 1997 and

> I'm not on HRT.

Then I would definitely get labwork done. If you do have any sort of

hyperthyroidism that could lead to bone loss, exacerbated by not having

whatever bone protection HRT offers. Or are you on any medication for

your bones? And do you take a lot of good calcium?

The symptoms I had my first year off ATDs weren't as clearcut as yours;

still I got bloodwork done every 2/3 months since I was so nervous about

whatever symptoms I did have - excessive, deep sleep (for a few weeks

following the production of a happy, though stressful, family gathering),

insomnia, weight gain (along with a glucose tolerance test). Yet my

levels were amazingly stable and healthy throughout.

Take care, Fay

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!