Message from GP Refusing to Give My Sister a Full Thyroid Panel

[Peggy427]

Hi Everyone,

I want to ask for advice on how my sister can persuade her GP to give her the thyroid tests she needs.

She's 46 and has suffered from fatigue, brain fog, aching limbs, psoriasis (really severe), nails dropping off, puffiness, fluctuating weight, severe cold (walks round with a hot water bottle even in summer), constipation, acid reflux, and low ferritin for twenty years. I share the same symptoms apart from psoriasis, and I'm getting tested soon - I can't at the moment for reasons I don't want to go into for now.

I suggested that she ask her GP to test her TPO and FT3 as I suspect we both have Hashimoto's. She's asked for thyroid tests in the past, and they have tested TSH and T4, and as they were in the normal range, her GP told her to rule out thyroid problems. I've included a screenshot of her GPs response to asking specifically for TPO and FT3 tests.

Can anyone suggest what she should do next? Of course, she'll get them done privately if he refuses to request them, but I don't think he should have refused. She's suffered so long.

[SeasideSusie Remembering]

Peggy427

Unfortunately the GP is correct.

Although GPs may request further tests it is the lab who makes the decision. Sometimes if TSH is in range nothing else is tested. Sometimes the standard tests are TSH and FT4. My FT3 is always tested because my TSH is always suppressed but it wouldn't be done otherwise. Antibodies aren't generally tested unless other results show a need.

[Wired123 in reply to SeasideSusie]

I think this is partially true.

If the GP puts down their justification on the form the lab don’t normally argue, my GP puts “on replacement thyroxine and not optimal” or something to that effect on the form. Once the labs did FT3 and left off FT4 🤦‍♂️

[Peggy427 in reply to SeasideSusie]

Thanks, Susie - I should have read through a few other threads before posting about this.

It's infuriating, though.

[pennyannie in reply to Peggy427]

I think you'll find that very many of us here have had to resort to paying privately to get the correct blood test in order to then present them to your doctor who then may not use them, but may then run similar tests on the NHS for you.

It's a ridiculous situation but even when on thyroid hormone replacement it's essential to be dosed and monitored on T3 and T4 blood tests, but routinely the NHS only tests a TSH which is pretty much meaningless once on any form of thyroid hormone replacement.

There is a list of private companies who can organise blood tests for you and you can find all these details on the Thyroid UK website.

[Peggy427 in reply to pennyannie]

Yes, it does seem as though doctors can push for the tests if they really want to, and correctly diagnosing a patient has to be cost effective in the long run.

My sister also has terrible anxiety. For years she would make her way to A & E complaining she was about to die. From what I understand about the thyroid now, she must have been having hyper episodes. A correct diagnosis sooner would have saved the NHS thousands in prescriptions for pain relief and anxiety medication. It's insane.

She'll just have to pay and take it from there. I'll update on her progress.

[Miffie]

I think the GP is correct. I know where I live the labs totally ignore any GP comments and do just as they decide.My GP arranged in writing with the Senior Biochemist at the lab for TSH, fT4 and fT3. She did blood draw herself and sent it off exactly as advised by the Senior Biochemist. The results were returned TSH in range, fT4 and fT3 not tested duty biochemist advised not needed.

It clearly demote me how the labs can totally overrule anyone.

[SlowDragon Administrator Ambassador]

It’s absolutely true

Lab won’t test Ft3 unless TSH below range and they frequently won’t even then

They won’t even test Ft3 for patients prescribed T3 on NHS

GP could request TPO antibodies

NHS won’t test TG antibodies at all, unless TPO are abnormal

Your sister needs Vitamin D, folate, ferritin and B12 tested too

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

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water (and last dose levothyroxine 24 hours before test)

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Anxiety is common hypothyroid symptom

[Peggy427 in reply to SlowDragon]

Thank you, I'll pass this on to her.

[serenfach]

I have been fighting this for some time, and have now got as far as the Welsh Minister for Health, who has sent me two replies, both wrong. First it was because the labs were so busy with Covid, and then because they did not have enough vials. The blood draw for thyroid goes in one vial, and this non testing has been going on since before Covid.

She has not responded to my calling her out. I will keep going though, as not testing T3 could be dangerous. They dont test for osteoporosis any more either!