EXPERIENCES TO SHARE WITH ME WHIST TRYING DOSAG... - Thyroid UK

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EXPERIENCES TO SHARE WITH ME WHIST TRYING DOSAGE CHANGES.(CARBIMAZOLE) 😊

Rmichelle profile image
Rmichelle
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hi all i have recently had my dosage titrated by Endo to 5mgs from 10mgs and feel rubbish and feel some of the symptons are returning , the dosage change has always hit me quick but i undestand that it takes a good couple of weeks or over to feel benefit or not from carbi.

I am just wandering if anyone can tell me their titration dose symptons and experiences and whether they had to increase or decrease abit to feel better. I am due bloods done on tuesday ready for endo app following week so they will show a better picture on whether i need more or less. Any advice will be great.

Also i have been taking my one tablet whole and i think i should maybe split to 2.5mgs twice a day as it only has a half shelf life and more hormone will have the chance to build up more on the one dose- correct me if this isnt true?

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Rmichelle
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DoubleM profile image
DoubleM

Hi, not quite up to date with all your posts (only float in and out of the forum). Do you have Hashi's? Carbimazole will be difficult to titrate, I'm not sure why the endo has suggested this for such a low dose.

I've had an over-active thyroid for 9 year and carb caused my goitre, which is now so big I'll always be on meds. It took 4-6 weeks for me to feel better on carbimazole when I very first started.

Have you ever tried PTU? I've been on PTU for about 7 years and it's easier to vary the dose and I have less side effects.

I'm sure someone will have someone else will comment and have good advice for you. I'm also at the endo beginning of Dec, seems a popular time to go ;)

Rmichelle profile image
Rmichelle in reply to DoubleM

Hi there i have been a member since july when diagnosed with hyper thyroid and put on 20mgs intil saw endo in october when i was prescribed 10mgs as bloods were creeping well down. So he called in the week to say 5mgs now even though he only received a tsh result of 3.77 as hospital lost ft3 and ft4. But feel rubbish on 5mgs and cant wait to have bloids done as this will give a clearer picture. My endo is useles and after this visit i will take charge and do titrating myself, i am ok on carbi and wouldnt want to change at this stage to ptu- complicated thing i do have hashis and endo insists i have graves running in tandem, even though he wont do a tsi test as he says most people have graves-blah.😊

DoubleM profile image
DoubleM in reply to Rmichelle

Oh dear, I was on the graves train for a while even with a negative anti body test - ha! I feel some endo's get stuck in a diagnosis rut and no longer see the patient as an individual, just an illness they need to treat in the same way every time.

Good luck with your next appt.

Rmichelle profile image
Rmichelle in reply to DoubleM

Thankyou. Yes they treat the numbers and not the person but yes thankyou for your input doublem.x

If you are having problem with drop of only 2.5, if you split the dose, it might make you feel worse. May be you will have to do this slowly - my husband was on steroids and had to take over a month a week at a time reducing the dose till he was at 1mg then he stopped.

Wait for a week from when you dropped the dose when you feel less wobbly then think of reducing the dose by 1 or a quarter of a tablet per week as recommended by the pharmacist.

A hot milky drink is recommended calcium, magnesium, may help. Ask pharmacist what the symptoms mean if you have reduced the dose, - she/he might say you need to go down more slowly.

Rmichelle profile image
Rmichelle

Hello gadgrantgg ive dropped by 5mg not 2.5 so im losing 5mgs perhaps i should just do 7mgs, bloody endo wanted 5mgs but i think i will try and stixk it till i get my bloods back on friday then if i dont see a improvement im going to change dose and tell edo ive done it, im resting plenty , palps have lessened and trembles.xx

in reply to Rmichelle

As the trembles have settled that is a sign you are feeling better which seems to show your 7.5 dose is right for you. I thought you were going to split the dose of 5gms, so did not realise you were still on 7.5.

If you are feeling well at a certain dose level, should you alter the dose?

You were at a point when you were feeling better - what dose were you on then before you felt hypo ?

You have to think of the endocrine system as composed of thyroid, and pancreas,

and gynaecology - ovaries. What luck to be a female with all those hormones

being adjusted, or out of kilter. There is a high incidence of diabetes later on when you have an existing thyroid problem

I read the post above of someone who had been on thyroid for nine years - and whose thyroid had grown. I had a similar trouble but was not on drugs at all - then I read articles on iodine deficiency, and over a period of 8 months I can see the two arteries, on either side of my neck, My neck is smaller.

Everybody thinks this is all nonsense - but in my case it is true. Just increase fish prawns shell fish milk, natural yoghurt then you might find you are able to convert the iodine from food in your thyroid gland. Carbs are definite slow down of metabolism, but as you are hyperactive you need foods such as milk, and green peas for calcium and magnesium. Parsley and celery are high in PQQ vitamin, which is one of the new finds in vitamins. It improves mental function and memory and brain fog as well as vitamin K and D.

Rmichelle profile image
Rmichelle in reply to

Hello there i was only on 7.5mgs for 4 days then endo rang to say reduce to 5mgs as he said tsh was looking towards hypo ranges now? I still have remained on one tablet of 5mgs and feel not so good on that still, im going to see it through abit until bloods come through next week and then post them here aswell and see what i can dabble with.

Had letter from hospital saying 5th december appointment they have cancelled and i have said not overally impressed with seeing a registrar and he does not inspire any confidence in me, i will be seeing a different consultant this time on 12th dec😊!!

I have also requested to see copy of my thyroid scan from the legal medical board who i have spoke to today and they will send me the disc when i have filled out the request form, it will cost no more than £50 but they gave a rough est of £30. Just want to see if any nodules etc are touching trachea etc as i can feel where they are and im not confident that they mention everything on the report. I think that side of the symptons have been avoided by endo so now he has the written report now i will discuss it further this time and say what i want.😊x

in reply to Rmichelle

That's brill - you managed to get a referral to another nhs endo.

Hope you get the results by e mail and by picture - as pictures on their own are woolly - don't think you should have to pay for info but expect it takes time to put them on a disc . Let's hope they have the right patient's info - not a migrant from abroad!

Rmichelle profile image
Rmichelle in reply to

I bloody hope they get it right and not any tom dick or harry😨😨.

in reply to Rmichelle

If you aren't happy with the results you can have the scan done privately it costs about Β£180. There are posts on topics concerning private ultrasound and how it is done.

Look at the scan and picture to see if it is a male adam's apple with gorilla hairs showing up between the nodes! Ha!

Rmichelle profile image
Rmichelle in reply to

I thought you were serious at first-you devil you!!lol😈

in reply to Rmichelle

It's my natural scepticism - tee hee!

in reply to Rmichelle

Log on to thyroidpharmacist.com/ articles

how to reverse Hashimotos with sugar imbalance - it helps to understand endo system. Dr Isabella Wentz - author. Very short article.

Know my sugar imbalance can be controlled by diet through carbs. - no info from NHS on this concerning hashimotos - when you get the sugar shakes and trembles you can see the link with the drug you are taking. So if it happens eating carbs may help resolve the symptoms.

An apple and banana may help.

Rmichelle profile image
Rmichelle in reply to

Oh i have just had a banana, i eat them for brekie. Sounds very interesting i will take a look at that.

in reply to Rmichelle

Bing search images of hashimotos brings up loads of images of hashis - re fluoride

Helvella gave link to extent of fluoridation(1yr ago)

bfsweb.org/one in a million - I logged on to this but cannot find it now. Severn Trent authority was listed as having natural fluoridation - other areas are in Newcastle -

in reply to Rmichelle

Hi how are your levels on carbi now? Have had trouble with computer so have had to delete

old details and start from scratch. Read a post saying you have cut down to a lower dose.

Take care.

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