First consult with endo - what to ask??

[HannahStevenson]

Hi there. I am a 32 yr old female and was diagnosed with hyperthyroidism and have been on 30mg of Carbimazole daily and 240mg of Propranolol daily (taking 6 tabs spread out through the day) for the last 5 weeks. I had second round of blood tests last week and have my first in person Endo consultation tomorrow to discuss and go from there.

From speaking to the docs today the TSH and thyroid antibodies are abnormal as expected (will ask to obtain copies of my readings)

She said B12, Vit C, Folate, kidney, liver all normal.

Bilirubin slightly raised but not worried.

Not coeliac.

I am keen to ask for an ultrasound on my thyroid as I have a goitre.

Is there anything else specific you think I should ask?

Any thoughts on the high dosage of propranolol? (My heart rate is averaging 80 resting now - it was very high pre meds) I have since been having trouble sleeping and am quite tired.

My eyes have been sore but went to the opticians yesterday and no apparent signs of thyroid eye disease - only need for glasses with very weak lenses for slight stigmatism

I am consciously trying to eat a healthy diet and reduce stress.

I would like to start a family as soon as is safe to do so... I am aware of PTU Propylthiouracil but don't know much about it yet..

Any thoughts/opinions/advice greatly received.

Many thanks!

[Hennerton]

The best advice I can give and I had galloping Graves’ disease, is to start keeping a log of all your blood tests and ask for a new one if you begin to sense you need more or less of carbimazole and propranolol. I responded very quickly to them and propranolol was stopped after two weeks. Carbimazole I struggled with and was either on too much or too little until my despairing Endo suggested a thyroidectomy. With hindsight that was a huge mistake, so do not be rushed into any decisions on your future. The NHS simply wants the easiest solution.

As for PTU, I know someone who has had three babies whilst taking it, all with absolutely no problems and even better, her thyroid is now behaving itself and she is off all medication. Good luck!

[HannahStevenson in reply to Hennerton]

Oh thank you so much for this. SO helpful x

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

And to see where within range results are

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Please add actual results and ranges if you have them

Or come back with new post once you get results ...including vitamins

[asiatic]

Diagnosed Graves and TED 5 years ago. If I had known then what I know now the 12 mistakes made in my treatment could have been avoided. My advice would be to swot up and become proactive and able to discuss with doctors statements they will make based on no scientific facts. Make sure TRAb is measured. Essential to learn how YOUR body feels when hypo AND hyper as you will need quick adjustments to your dose during the course of the disease. I could go on and on but the above will prepare you for the start of what might become a long journey but one that with knowledge is manageable. You have taken the first steps posting here.

[asiatic]

You mention your eyes. I should have mentioned that like Hennerton I quickly responded to Carbimazole and became hypo which worsened my TED. Refractive changes to your eyes mentioned by your optician could be an early sign. I would therefore ask for a referal to an opthalmologist with experience of TED. Mine did an MRI scan to check. .

[pennyannie]

Hey there again,

It is very important that you let the endo know how you currently feeling as this will help determine any adjustments to medication he maybe considering. and you must let him know that your eyes are now also with symptoms, as it can all be related to the medication.

Discuss the fact that you are wanting to start a family, and can you have a time frame on how long you will be on the AT drugs, and if he doesn't suggest considering switching from Carbimazole to PTU, maybe ask if that's an option for you ?

Whilst your vitamins and minerals maybe said to be " in range " it doesn't mean they are optimal, it just means you don't qualify for a NHS prescription to supplement, and as you will see, from reading posts on here, many of us self supplement these to improve core strength and overall good heath.

It will be in your best interests to arrange copies of all blood work, so that you can follow your own progress, and keep a dairy of your symptoms as they may well change with AT dose adjustments.

Anything you're not sure of, ask away, as there are several people on here who have been there and have an understanding of the system.

I think I said everything else last time I posted on here to you, so Good Luck, and keep us in the loop.

[HannahStevenson in reply to pennyannie]

Thank you so much! I shall report back! x