Should I do private thyroid test before appointment with Endocrinologist please?

[Oakwood4321]

Hello,

I last had a private Thyroid test with Monitor My Health on 26/4/21 and posted results on here plus sent them to my GP.

My GP had also just done a full blood test, surgery informed me doctor would call me re results. to discuss my high cholesterol .

On the call I discussed my private thyroid test & also link to thyroid /high cholesterol. She insisted my Thyroid results were ‘all normal’. She asked if I’d had the menopause (I’m 66). Gave me Menopause Matters link to look at despite me saying I had it years ago.

I did persist with repeating my thyroid symptoms and said I was saving up to get a private Endo apt. She told me to be careful/some might keep taking my money /take advantage etc. she said she’d run it past an Endo and let me know what they say. That was 2 weeks ago and I didn’t hear back however, I got a hospital letter 2 days ago with an appointment for an Endo on 7 June.

In November I had a throat scan to check my difficulty swallowing. Doctor who did scan told me my thyroid very small likely due to being on Levothyroxine for 20 years. The only feedback from GP was ‘all normal.’.

I have difficulty with breathlessness, glands in neck swelling some days, exhaustion , awful brain fog , bad raynauds started last winter .

My 2 private thyroid tests I’ve done perhaps suggest Autoimmune thyroid according to feedback on here. GP has never picked up on this. I’m so glad I’ve joined Thyroid Uk & am getting support.

I imagine Endo will run blood tests but wonder whether to get a full thyroid test done to take with me?

Best wishes

[SeasideSusie Remembering]

Oakwood4321

I imagine Endo will run blood tests but wonder whether to get a full thyroid test done to take with me?

Well that would certainly mean that your test was done with the right timing to ensure the most accurate results but to be honest I'd be surprised if an NHS endo will accept private test results. However, it would certainly lead to discussion and you can possibly use them as a lever to your advantage, even if only to persuade the endo to do tests he might not have considered doing otherwise. Just remember that timing of test is important and if endo wants his own tests it might not be possible to arrange an eary morning appointment if done at the hospital.

[Oakwood4321 in reply to SeasideSusie]

Thanks SeasideSusie. Good point re timing of any test Endo might instruct. I’ll get earliest one and take my Levo to coincide with timing leading up to it.Is the Thyroid Premium Gold an all singing and dancing best bet to choose? 🙏🏽

[SeasideSusie Remembering in reply to Oakwood4321]

Oakwood4321

Blue Horizon Premium Gold or Medichecks Advanced Thyroid Function Test both do full thyroid panel plus vitamins and both can be done by fingerprick or venous blood draw at extra cost.

Discounts for both companies here:

thyroiduk.org/help-and-supp...

and today's Thyroid Thursday offer from Medichecks is 20% of any test:

healthunlocked.com/thyroidu...

[Oakwood4321 in reply to SeasideSusie]

Thank you SeasideSusie 😊

[SeasideSusie Remembering in reply to Oakwood4321]

You're very welcome 😊

[SlowDragon Administrator]

Previous post from 3 weeks ago showed low vitamin D and ferritin

healthunlocked.com/thyroidu...

As you are gluten intolerant you’re likely to need addition of small doses of T3 prescribed alongside levothyroxine

Have you considered Dio2 gene test.

thyroiduk.org/deiodinase-2-...

If you test positive can help get T3 prescribed on NHS

[Oakwood4321 in reply to SlowDragon]

Thanks SlowDragon. I’ve not heard about the Dio2gene test before. I will get that done, thanks for the link.

I’m taking Thorne B Complex now since last test, plus Doctors Best D3, & Vitabuy K2.

Do I need to stop the B Complex a week before I take thyroid profile b/t?

I tried taking my Levo before bed for few nights but, as it always feels like it’s stuck in throat, I drink lots of water with it, that didn’t work for me as up & down to loo all night. 😊🙏🏽

[SlowDragon Administrator in reply to Oakwood4321]

Yes stop vitamin B complex a week before ALL BLOOD TESTS

Personally I then take separate folate and separate B12 in that week

[Oakwood4321 in reply to SlowDragon]

Yes, definitely gluten intolerant. I was tested for celiac but that was negative. I avoid gluten. 🙏🏽

[fuchsia-pink]

I'd call the endo's secretary a good couple of weeks before the appointment and ask her to send you a blood form (which means you can have bloods done at the GP or hospital or wherever is easiest/nearest) - ideally with all the blood tests on it you need. I had some success with my endo last year by saying that "these are the tests recommended by Thyroid UK" - ie TSH, free T4, free T3, antibodies and key nutrients - ferritin, folate, vit D and B12. Good luck x

[Oakwood4321 in reply to fuchsia-pink]

Thank you fuchsia-pink. I’ll ask his secretary to do that. At least then there’s no risk of Endo not accepting private blood tests results. x

[Daisywhoopsa]

Hi I’m interested in knowing what happens next for you as I have similar swallowing difficulty, definitely Hashimotos, recently diagnosed with GERD, and a scan has revealed a much smaller thyroid than expected.

[Oakwood4321 in reply to Daisywhoopsa]

Hi Daisywhoopsa, sorry for delay in replying, I couldn’t log on . I had an appointment for 7 June with an Endo but this has been put back to 21 June (with a member of his team ). I will feedback after appointment. 😊

[Daisywhoopsa]

Thank you!

[Oakwood4321 in reply to Daisywhoopsa]

Hi Daisywhoopsa, hope you’re well.I haven’t got anywhere as yet with the difficulty swallowing. The nhs Endo I saw in June was disappointing, didn’t even include a full thyroid panel in blood test.

When I told her about my difficulty swallowing her reply was ‘it can be imagination’. 😡 I know myself very well and know it’s not .

I also asked her if I could get liquid Levo, she told me to ask my gp as she didn’t do that. My gp flatly refused due to cost.

Will follow on with this when I see private Endo.

😊

[Daisywhoopsa]

Hi. Thanks for your message. I hope you get sorted soon! I’ve since been diagnosed with a hiatus hernia - which I wasn’t aware of- and increased the meds I already take (PPI’s) which has helped with the swallowing problem. I’ve also now seen a private endo and started on a trial of T3 with Levo- only a week in so far but definitely got less pain, more energy and sleeping better - fingers crossed it continues and some of the other rotten symptoms of Hashis go too! Waiting for bloods at 4 weeks to see how the numbers add up.

[Oakwood4321 in reply to Daisywhoopsa]

Hi Daisywhoopsa, I hope things are going well with your T3 trial. It was great to see the positive outcomes you’re having 😊

[Daisywhoopsa]

Bloods this week- having read the Paul Robinson books I think I know what to expect- then to speak with the endo to see about adjusting dose. I’ll keep you posted.

[Oakwood4321 in reply to Daisywhoopsa]

Sounds really positive! 😊