RE: Scan results - Now being treated but still confused

[Guest guest]

Hi Leigh,

It isn't unusual to swing from one to the other if you have hashimotos

thyroiditis. Has your endocrinologist checked your thyroid antibody levels

recently? If not he really does need to do so. Hopefully another TPA person will

be able to explain the rationale behind this a bit better than I can.

Tracey

[Guest guest]

Hi Leigh, I've had a sub total thyroidectomy for Graves and swing from one state

to another hper to hypo but it does seem to baffle the endocrinologists I've

seen. I've had free prescriptions for many years and been prescribed both

carbimazole then thyroxine and have never been told that I will lose my

exemption certificate.

Helen

[Guest guest]

Hi Leigh - read the following from the about.com web site http://thyroid.about.com/cs/hypothyroidism/a/hypoandhyper.htm

Luv - Sheila

I did think that he must be wrong about it being unusual to go from Hypo to

Hyper, but the chemist commented when I picked my script up that it was unusual

and said that if it continued I wouldn't get free prescriptions any more. I

can't be that weird, surely other TPA'ers have had this?

Thanks

Leigh

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18:35:00

[Guest guest]

Thanks for that link Shelia, it was very useful.

To be honest though I am still very confuddled. Ninety percent of the Hyper

symptoms do fit, but some very key ones don't. For example my blood pressure is

(and always has been) appallingly low. And I don't have racing heart sensations

/ palpitations. Still the Endo was absolutely unbudging on the Graves diagnosis,

on the basis of my scan.

Can I ask, do you know if Dr P would have a better grip on what is going on with

me? I am one step away from cutting my NHS losses and going down that route, but

if he specialises mainly in Hypothyroidism perhaps I need someone else?

Thanks once again to all TPA'ers for your support. It is always very much

appreciated.

Leigh

>

> Hi Leigh - read the following from the about.com web site

> http://thyroid.about.com/cs/hypothyroidism/a/hypoandhyper.htm

>

> Luv - Sheila

>

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.437 / Virus Database: 271.1.1/2924 - Release Date: 06/07/10

> 18:35:00

>

[Guest guest]

I think having a consultation with Dr P would benefit you

greatly. He will explain many things to you about Grave's disease. He deals

more with sufferers of the symptoms of hypothyroidism because there are

approximately 1 in 4 who suffer the symptoms of hypothyroidism so that it why

there are more forums for hypothyroidism than there are for hyperthyroidism.

Also, once hypert. you are likely to become hypot. one day

Luv - Sheila

Thanks for that link Shelia, it was very useful.

Can I ask, do you know if Dr P would have a better grip on what is going on

with me? I am one step away from cutting my NHS losses and going down that

route, but if he specialises mainly in Hypothyroidism perhaps I need someone

else?

[Guest guest]

Hi Leigh, Depends on what is really going on- some unfortunate folk have both Graves and Hashimotos- both hypo and hyper- thare can be both hot and cold nodules in the thyroid. as to stopping your free prescriptions- after treatment this may be jumping the gun as treatment of graves usually results in the deastruction of the thyoid either by RAI or surgery- most folk find the carbimazole hard to tolerate. But if it does work, sufficient will put your thyroid to sleep and then thyroid replacement therapy should keep you on an even keel, but from what I have heard using just sufficient carbimazole to keep you on an even keel will only work if you thyroid output is constant- which is most probably is not. Have you been tested for antibodies- TPO and Tg-ab if you have these then your have Hashi's too. Keep a very careful diary of your test results, with their ranges and you symptoms at that time. There is much useful info in the forum files-but mostly directed at hypos as that is where most will end up. I hope Tess is about so she can share her experiences with you. > thyroid treatment > From: jolly.com@...> Date: Tue, 8 Jun 2010 15:23:55 +0000> Subject: Scan results - Now being treated but still confused> > Following my quick call up for scan (one working days notice) which scared the bejesus out of me, I had a one month wait to get the results. > > I saw the Endo today and the good news is that I don't have Cancer. Clearly I am very pleased about that. But the news wasn't all great. Apparently I have Graves disease. I am a bit shocked. To give a very potted history, my results have swung from 'mildly' Hypo to Hyper (about six months now of Hyper results). I have been off of Levotyroxine since last June, so that isn't to blame. The Endo told me going hypo to hyper is so unusual that he hasn't come across it before and has therefore prescribed me a very cautious dose of Carbimazole (10mg a day) which he will monitor via blood test every six weeks ,though I won't see him in person for another six months!. > > I did think that he must be wrong about it being unusual to go from Hypo to Hyper, but the chemist commented when I picked my script up that it was unusual and said that if it continued I wouldn't get free prescriptions any more. I can't be that weird, surely other TPA'ers have had this? > > Thanks> > Leigh> > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Hi Leigh,

Just saw post I`ve been away being a guinea pig for new doctors, will

post about it later.

Leigh I have both Graves and Hashis and just had thyroid removed last

month, my original diagnosis was the Graves though. I don`t understand

Endo`s mine said the same and that was one of the reasons I was doing

my guinea pig bit......I swung between Hyper and Hypo like a bloody

roller coaster!!!

Have you got your Thyroid blood results? Reason I ask is when I was

eventually diagnosed by endo I`d had Hyper blood results for 3 months

running and a positive antibodies test BUT what I didn`t know then was

that my levels were falling back into normal range on their own! I

wasn`t clued up then lol. I was started on Carbimazole at this point

and my T4 (which was only ever high twice and that was at later stages, it was

always T3 with me) dropped like a stone within about

10 days, I put on 4 stone in 3 months...it was a bloody nightmare I

was really Hypo and GP`s insisted I was Hyper as TSH was low.

Have you started the Carbimazole yet? Do you feel you need them at

this point? I always knew when I was Hyper but try telling GP`s that!

I always took my pulse in the end up and it was always my best indicator, on

occasion it was up at 160 resting!

If you have started them get tested every two weeks if you can and if

you have just started them....did they test your Liver function first?

Thats another thing I had to find out myself....mine went up into the

1000`s....a side effect of Carbimazole...nobody told me. Did they

explain all the side effects of anti thyroid drugs to you...tell you

to look out for sore throat ect?

Have to go just now but my advice is for you to get a hold of your

Blood results before you start the pills.

Love Tess

PS: Hugs.....Graves is sh***

>

>

> .

> Keep a very careful diary of your test results, with their ranges and you

symptoms at that time. There is much useful info in the forum files-but mostly

directed at hypos as that is where most will end up.

> I hope Tess is about so she can share her experiences with you.

>

>

> > >

[Guest guest]

Leigh, Tess is right when she says you have to be careful on Carbimazole.

Firstly as she says your body can, in rare cases, have a serious reaction to it

so your endo needs to have discussed this with you and you should have an info

card to carry round with you to show the GP if you ever get symptoms.

Secondly, beware of endos that put you on Carbimazole and leave you for too long

between appointments or blood tests. I've been put on this several times before

and in some cases was left too long between check ups and went horribly

hypothyroid and ill. Get back in touch with endo or gp at first hypo signs.

and thirdly in my experience this drug made me feel dreadful - with really bad

joint pain symptoms and tiredness - not sure if it was because I was

undertreated with thyroxine (was on block/replace regime for some of the time)

or because it was the drug itself that gave me symptoms.

Recently when I've been prescribed it I've 'self-medicated' and not taken the

daily dose every day but just taken occasional tablets and monitored how

hyper/hypo I've felt.

Was diagnosed with Graves 17 years ago so have lots of experience of this

disease if you want to mail me direct about any concerns you have.

Helen x