Follow up post after call with GP

[sunnyday7]

I posted two weeks ago here

healthunlocked.com/thyroidu....

Some of you wanted Daughters results in a different format

Since posting my daughters results, we’ve had a chat with our GP. She has agreed to prescribe a 4 months script of folic acid. Also agreed to retest thyroid in 3 months.

We will also do our own medicheks complete thyroid panel test in 3 months.

You kindly recommended getting calcium, Vit D, coeliac, and pernicious anaemia tested.

Can we do these ourselves privately ?

Do medicheks do them and which tests should we choose?

We’ve also pushed for EDS to be looked at again but the GP seemed reluctant to help.

Thank you for your continued advice and help.

Where would we all be without you!!!

[Anthea55]

Hi sunnyday7,

We’ve also pushed for EDS to be looked at again but the GP seemed reluctant to help.

I would guess that your GP knows very little about EDS (Ehlers-Danlos Syndrome). It's described as rare. My daughter has it and has had to go a long way to find someone to get it diagnosed. I've just googled and I see that there's The Ehlers-Danlos Society at

ehlers-danlos.com/what-is-eds/

That might be helpful.

Calcium, Vit D, coeliac, and pernicious anaemia tests.

I'm sure that your GP should be able to do these - why pay?

Others will give you further advice.

[sunnyday7 in reply to Anthea55]

Thank you for your reply and useful information.I don’t want to pay for tests, just not a very proactive GP who seems to think any testing is a waste of time and money☹️.

So any advice would be so helpful!

Thank you.

[Anthea55 in reply to sunnyday7]

Sometimes you have to be awkward and insist that you want those tests.

[serenfach]

There is no definitive test for EDS. Most GPs have heard of it but know there is no real treatment. You do get less bendy as you get older, but some joints, especially the knees may need looking after, and it is best I have found not to exercise too much. Yoga is good and the EDS makes bending your body easier than most people find it.

I can still, at 70, put my hands flat on the floor rather than just touching your toes.

One thing to look out for is that it is quite common for those with EDS not to react to most local anaethetics, so tell the dentist. Mine did not believe me that nothing had gone numb.

You can test this with local anaethetic cream.

Give your daughter a hug from me, another bendy body!

[sunnyday7 in reply to serenfach]

Thank you so much, I will!!

[SlowDragon Administrator]

As discussed in previous post

Retest thyroid levels again in 6-8 weeks

She needs TWO separate thyroid tests where TSH is over 5

See flow chart on top of page 2

gp-update.co.uk/Latest-Upda...

With low B12 and deficient folate her GP should test for Pernicious Anaemia before prescribing folic acid for folate deficiency

GP may not agree

You don’t need GP to test vitamin D

Results above show she’s taking too much vitamin D and needs to reduce dose to maintenance dose.

How much vitamin D has she been taking.

Unlikely to need calcium tested

GP might agree to do coeliac blood test. If not test via Lloyds pharmacy is cheap test

[sunnyday7 in reply to SlowDragon]

Thank you, we do appreciate your advice.