update

[Rubydoo23]

apologies for the vague post..

I was diagnosed as over active thyroid I was put in carbimazole at first which worked however then i became unwell and it dropped my iron levels and white blood cell count.

I was then put in propylthiouracil 100mg daily then I had RAI in march this year.

I have been back for bloods and then been told they were fine I’ve been back on to the doctors and explained that I didn’t feel right as I knew it would be my thyroid again not wanting to play ball.

3 blood test requests later my T4 is 5.5 and my TSH is 40 to which now the consultant at my endocrinology appointment 2 weeks ago has requested that I stop the propylthiouracil and had requested thyroxine however I’m now waiting for the doctors to send my prescription to the chemist so I can collect this I have a follow up appointment in dec 23

[PurpleNails Administrator]

How frequently are you being monitored?

Hypothyroidism is expected after RAI is usual for PTU Is stopped prior to treatment and only resumed if still hyper after close monitoring.

Did you stay on 100mg PTU? Was it reduced? What starting dose of Levo have you been given?

[pennyannie]

Hello again :

Radio Active Iodine thyroid ablation is a treatment option which slowly burns out the thyroid in situ -

it reduces the thyroid's function to over produce thyroid hormones and results in the patient being swopped from having an overactive thyroid to having an underactive thyroid -

and requiring life long medication of T4 thyroid hormone replacement - Levothyroxine.

Some patients are advised to stop the Anti Thyroid drug a week or two before RAI.

After the treatment the patient should become progressively hypothyroid and a prescription written for T4 thyroid hormone replacement - Levothyroxine

I had RAI thyroid ablation back in 2005 - I don't remember stopping the Anti Thyroid drug but do know I was immediately placed on T4 - Levothyroxine after the event.

Your T4 looks to be much too low - most ranges for T4 are around 12.00 - 22.00 :

Do you have the range there please ?

The PTU is an Anti thyroid drug and blocking your own T4 thyroid hormone production -

I hope your new instructions are to stop the PTU and that this new prescription is for T4 - thyroid hormone replacement as your own thyroid gland becomes totally disabled and non functioning.

[pennyannie in reply to pennyannie]

It might be a good idea to register for on-line access to your medical records held with your doctor and then as you progress through these next few months and wish to share your progress and blood test results with forum members we can help explain what it all means.

It will also be a good idea to ask your doctor if you can have your core strength vitamins and minerals run as ferritin, folate, B12 and vitamin D need to be maintained at optimal levels for optimal absorption and utilisation of T4 Levothyroxine - thyroid hormone replacement, and again when with these blood test results we can advise where your core strength vitamins and minerals need to be and offer considered suggestions.

T4 is best taken on an empty stomach and you need to wait around an hour before eating or drinking anything other than water.

As you can guess - I'm preparing the ground - hoping this new prescription is for T4 thyroid hormone replacement -

Please keep us in the loop - we are a patient to patient forum - and here to help - supported by the charity Thyroid UK - where you may like to read further around all things thyroid - thyroiduk.org

[Gingernut44]

Were you not told to stop taking the PTU two weeks before your RAI treatment and did you continue taking it after, if so, you’re Endo has been negligent (nothing new). You should have had a blood test at 6 weeks after the RAI and again, 6 weeks after that to track your hormone levels. To leave you until your TSH is 40 with an under range FT4 is a disgrace, worthy of a complaint to Healthwatch.