Re: recent blood test / Graves

[Guest guest]

Hi

Welcome back! It looks like they have

overtreated you. And yes it will be interesting to see if they take you off

the carbimazole (or go on a very low alternate day maintenance dose) and see whether

you’ve managed remission. Do not let them fob you off with any guff

about six weeks – that’s TSH that takes 6 weeks to respond and I thought

the aim of the game with Graves was to keep TSH suppressed whilst getting the

T3 and T4 in normal ranges (anyone help me out here?) but according to the info

Tess sent me a rise in TSH is definitely a sign of overtreatment on carb.

Good on you for not letting your disease stop you living and going on your trip

anyway!

I can’t comment on thyroid replacement, I don’t

know enough about Graves disease yet (sure I

will soon!) to say whether that would be wise, or whether they need to leave

you and see if you can achieve remission on your own. Apparently antibody

results will be a good indication of whether you’ve achieved remission –

are they testing these? I know for me that my levels rose quickly when my

dose of carbimazole was reduced – and also now my levels are going hyper

on a dose that formerly sent me hypo within ten days. Graves

is very tricky!!

I’m due to see my endo and its looking like

surgery for me as eyes getting worse and I’m not responding to

carbimazole (still going up despite high dose) and I’m making sure I have

a very well researched list of questions to ask him before I go.

Good luck with your appointment, let us know how you

get on.

X

Many thanks for your comments. I'll let you know

tomorrow what the consultant will have told me.

To be honest I saw India

in a bit of a hypothyroidism haze but it was still worth it..much harder now

I'm back.

Thanks again.

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[Guest guest]

Hi ,

Glad you enjoyed India...

Your results are terrible, sadly no surprises there though. Here's

that link I gave you last time just in case you don't have it anymore.

http://gpnotebook.co.uk/simplepage.cfm?ID=-1596981218 & linkID=8180 & cook=no

gradual dose titration regime in thyrotoxicosis

Carbimazole can be given in reducing doses, starting with a dose of 15-40 mg

daily. Serum T4 and TSH are measured every 4-6 weeks and doses reduced

accordingly.

Maintenance doses are carbimazole 5-15 mg per day and propylthiouracil 50-150 mg

per day; once reached, monitoring is every 12 weeks. It is not sufficient to

solely monitor serum TSH since this may remain suppressed once normal T4 has

been achieved. A rise in TSH suggests overtreatment. Once a maintenance dose has

been achieved then the interval between biochemical tests can be extended to 3

months

Print that and take it with you tomorrow. Your TSH is ridiculous as is

your T4, SO MUCH FOR MONITORING YOU ON CARB ALONE!!!

If they say tomorrow they'll lower it, TELL them don't ask that you want back on

B & R, if they take you off it, ask them about replacement,

you were hypo before holiday and worse now. Sometimes I wish for my hyper days

back....and a bloody GUN!!

BTW, after your post about ferittin, I checked mine back when I was on

carb........35, so it must have something to do with it, 2 weeks after

thyroidectomy.....105, that can't be a coincidence!

Ask about liver function tests too, you've been hypo too long on carb.

Big Hugs and welcome back

Love Tess

>

[Guest guest]

Hi ,

sorry to hear you're not responding to the Carbimazole treatment. could it be

Block & Replace would be more appropriate?

I saw the Locum consultant. She had my results from the blood test taken on

Wednesday which were better than the ones from the previous two weeks which I

posted last night.

T3: [3.1 - 6.8 pmol/L] - 4.1

T4: [12.0 - 22.0 pmol/L] - 13.6

TSH: [0.27 - 4.20 ml/L] - 6.20

She lowered my dose to 5mg Carbimazole and tested me my iron and Vitamin B12

level because of the hair loss. Hair loss she said was due to the episode of

Hyperthyroidism. She said it would eventually stop although nurse and

consultants have been saying that for the past 2 months...so it seems to take a

while!

All the best,

[Guest guest]

Hi

That’s looking better isn’t it – going

the right way and shifted pretty quickly J although no fun for you in the

meantime!! Did you see my post re ‘world’s best endo’ –

he said there is a two week lag symptoms to blood – so you could get a hyper

blood test whilst feeling hypo and vice versa depending on which way your

levels are going. Do you feel better? Maybe it’ll take you a week

or so to catch up with yourself but if they can keep you on 5mg and stop you going

hyper that is a good result. Hopefully your levels will come

up a wee bit more and then stick so you can get your energy back.

Tess will know a bit better than me re the TSH.

I’d be interested to know about your hair as mine is starting to fall too

out but I’ve been feeling hyper for a few weeks now, so maybe no

surprise. My massage therapist has recommended a little organic shampoo

company in Devon, said it did wonders to

restore her hair after her thyroid issues. Will let you know.

You are treated at the same hospital as me, I

wonder if you could request to see my endo in person (he’s the boss after

all!) as he really is very good – he said that ATD treatment is a

marathon not a sprint and told me not to worry too much, but getting euthyroid

on meds was by far the best bet. If you can avoid surgery and

have a shot at remission maybe all this nasty treatment will have been worth

it? (That’s my hope at least!!!).

When are they proposing to monitor you again?

Not too long I hope? Hopefully in two or three weeks?

But really pleased the results are better –

fingers crossed that all continues to go the right way and they keep a close

eye on you.

As for me I’m on 40mg for seven days, 30mg

for three days then a blood test. Because of my eyes he’s

less concerned with me being a bit over, than he is with me going hypo – we

are still trying to hit on the right ‘recipe’ but I have a little

more faith we are going to get there!

Really pleased its better news for you this time.

Best

x

T3: [3.1 - 6.8 pmol/L] - 4.1

T4: [12.0 - 22.0 pmol/L] - 13.6

TSH: [0.27 - 4.20 ml/L] - 6.20

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[Guest guest]

Hi ,

You're right. I should be more assertive and ask to see your endo. So far I

have only seen a friendly locum and the specialist nurse. The whole thing is so

much hassle that sometimes I give up. Little things can really drag you down,

from having to ask all the time for the print out of blood tests, to chasing

they post the copy letters. Last time they couldn't give me an appointment due

to computer breakdown..A week has gone by and I'll have to chase them again as

they'd told me they would send me the appointment the following day...or would

it be the postman who's not doing his job?

With regard to hair loss, I'm taking some ferritin tablets due to the fact that

my iron level was so low and i'm waiting for some more results to see if it has

to do with my lack of vitamin Bs.

hope your treatment is working.

A brief response but feeling pretty exhausted tonight

best

>

> Hi

>

>

>

> That's looking better isn't it - going the right way and shifted pretty

> quickly :-) although no fun for you in the meantime!! Did you see my post

> re 'world's best endo' - he said there is a two week lag symptoms to blood -

> so you could get a hyper blood test whilst feeling hypo and vice versa

> depending on which way your levels are going. Do you feel better? Maybe

> it'll take you a week or so to catch up with yourself but if they can keep

> you on 5mg and stop you going hyper that is a good result. Hopefully your

> levels will come up a wee bit more and then stick so you can get your

> energy back.

>

>