First Endocrinology appointment today. Please can I have ALL the advice?!

[sunshineisbetter]

First Endocrinology appointment today. Please could I have any advice based on the information from my previous posts?

I am taking my checklist of symptoms. Do I need dates etc? Do I also print off all blood test results to take along too?

I am pinning so much hope on this appointment.

Thank you in advance xx

[Lalatoot]

Take blood test results .Make a bullet point list of points you want to make so you don't forget anything.

Don't get your hopes up too much. It can be very hit or miss. The first appt they don't know you so may be very non committal as they look at your results.

[fuchsia-pink]

You can expect to be weighed and possibly blood pressure taken. The appointment itself may be quite brief - so follow Lalatoot 's wise words and take a short written list of what you want to cover. Two copies of your recent blood results - ie showing any deterioration and percentages through range for free T4 and free T3 may be helpful - so you can leave one with the endo.

But please be patient - this first appointment may not achieve much. Good lck - let us know how it goes x

[SlowDragon Administrator]

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

healthunlocked.com/thyroidu...

Have you had ultrasound scan of thyroid

If not, request one

What were most recent vitamin D, folate, ferritin and B12

Please add here if got them

If not been tested in last 6 months request they are

Have you had coeliac blood test done

If yes, and negative, are you already on strictly gluten free diet

Print out tick list on hypothyroid symptoms here

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[sunshineisbetter]

I’ve just had my endocrinology appointment. They are such an amazing team.

As predicted, I’ve been diagnosed with Autoimmune thyroid disease due to my antibody and TSH levels in my blood test results. I need to take life long preventive medication (thyroxine) starting asap and also have my thyroid scanned.

Feeling emotional because it’s been such a rough few months to reach this point but also really positive about symptoms hopefully improving xx

[SlowDragon Administrator in reply to sunshineisbetter]

Great to hear it went well

How much levothyroxine are you starting on

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Unless you know you are lactose intolerant, best to avoid Teva brand levothyroxine

Starting on Mercury Pharma or Accord brand levothyroxine as most easily tolerated by most people

[sunshineisbetter in reply to SlowDragon]

I think she said 25 going up to 50 after either 2 weeks or after re testing in 6-8 weeks? There was a lot of info to take in but she said she would copy me in on the letter sent to my GP x

[sunshineisbetter in reply to SlowDragon]

Thank you for the info on brands. How does this work? Can you request them at the pharmacist?

[SlowDragon Administrator in reply to sunshineisbetter]

Obviously difficult to know, until started which brand of levothyroxine is going to suit you best

But Teva brand upsets many people

So when you take prescription to pharmacy ask which brands they have in stock

If starting on 25mcg initially there’s only Mercury Pharma, Wockhardt or Teva brands

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[sunshineisbetter in reply to SlowDragon]

Thank you. That’s all so helpful.

I take my anti anti depressant and contraceptive before bed so I will need to work out a plan.

How do people take thyroxine on an empty stomach before bed? How much of a gap after eating dinner is required?

[SlowDragon Administrator in reply to sunshineisbetter]

Depression is extremely common hypothyroid symptom, so you may eventually be able to stop antidepressants

If you reliably get up for loo in night, can take levothyroxine in middle of night

Recommend getting weekly pill dispenser as it’s very important to take levothyroxine every day. Pill dispenser makes it easy to see if missed one (take any missed tablet as soon as you realise)

Two to three hours after eating for levothyroxine

[fuchsia-pink in reply to sunshineisbetter]

If you're in England and under 60, remember to get your prescription exemption certificate - the GP should have the form. This covers ALL prescriptions, not just your levo, and if you've paid for your first prescription I think you can claim the cost back

[if you're in Scotland, Wales etc I think prescriptions are free anyway]

[helvella Administrator Thyroid UK in reply to fuchsia-pink]

Rules on reclaim limit to these precise circumstances:

If you need to pay prescription charges before your medical exemption certificate arrives, you can get a refund as long as:

you ask for an FP57 refund receipt when you pay (you can’t get one later)

the start date of your medical exemption certificate is the same or earlier than the date you pay for your prescription (certificates are backdated one month from the date that we receive your application - they can’t be backdated any further)

You must claim your refund within three months of paying.

The FP57 refund receipt tells you what to do.

nhsbsa.nhs.uk/exemption-cer...

Lots more information on that link.

And it is important that people are in physical possession of a Medex, not just entitled. Fines have been issued for breaking that rule.

[fuchsia-pink in reply to helvella]

Thanks, Helvella