Wish me luck: After being sent round the houses... - Thyroid UK

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Wish me luck

phobicgirl profile image
18 Replies

After being sent round the houses with lots of private this private that, I am still so unwell and then I found this site, lightbulb !!!! My thyroid is the problem, I’m on Levo but under medicated maybe! of to Drs today, he has made me quite unwell with all his potions, so today I am armed and ready to get him educated on my thyroid, thanks guys and know this will not be easy or short process but WISH ME LUCK I’m gonna need it.

phobicgirl 😁

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phobicgirl
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18 Replies
NWA6 profile image
NWA6

Good luck! I have only recently started following this message board but in a very short space of time I have gained so much knowledge from the posters. I hope this will be the same for you 😀

phobicgirl profile image
phobicgirl in reply toNWA6

Yes this is best place to be and thank you 😁

SeasideSusie profile image
SeasideSusieRemembering

Good luck phobicgirl. Let us know how it goes.

phobicgirl profile image
phobicgirl in reply toSeasideSusie

Thanks so much for the guideance so far 😁

Marz profile image
Marz

Try to obtain copies of all your recent results with ranges from the surgery - so you can post here with good info and also you can monitor your progress ( start a little file ) Also good to see what has been missed ;-) The results are legally yours - so do not put up with any nonsense from Reception.

Wishing you well and a good appontment !

thyroiduk.org

The above link takes you to the main website of this forum where you will find loads of information ...

phobicgirl profile image
phobicgirl in reply toMarz

Thanks so much

Still very unwell but gonna do my best to be pro active with thyroid, not the M.E I never had ... I can see from this forum this is not an easy disease to control without a good understanding doctor. 😁

Marz profile image
Marz in reply tophobicgirl

If you have had a ME diagnosis then it is vitally important to ensure the T3 is tested - the Active thyroid Hormone needed in every cell of your body ...

healthunlocked.com/thyroidu...

Apologies - I did not read your earlier post/thread - linked above - before responding earlier - ooops !

phobicgirl profile image
phobicgirl in reply toMarz

😁 I am still a newbie and green as . Will take all advice I can get to be well, rushed to hospital on Friday, arms look like I’ve taken a beating, lovely excitable Dr said all blood works ok, shall see what my GP says about ones I had 3 weeks ago, I did post them here and had good advice 😁

SlowDragon profile image
SlowDragonAdministrator

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

That great long list of tests in previous post....

only TSH and FT4 were relevant

Essential to test vitamin D, folate, B12 and ferritin plus both TPO and TG thyroid antibodies and FT3

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

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

UK GP practices are supposed to offer online access for blood test results. This is the easiest option

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.

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.

phobicgirl profile image
phobicgirl in reply toSlowDragon

Thank you for this information which will keep me busy for a few days or eeeks 😁 I have never been told how to approach a blood test each year, I take my meds then have it !!! I know better now from the info I have received here. Dr said my results were ok, he has referred me to an endo on the nhs, been there once and he said was my M.E causing symptoms, so no resolve there, had my meds cut a few years back as doc said I don’t need as much now I’m older! Anyway I’ve booked a private endo for 17th of March in hope of some good advice and he will hopefully tell me resting I need and we can go from there. Have also seen private ENT, don’t ask haha, also private neurologist, he wanted to send me for scans at a cost of £1400 and then I came here and my lightbulb lit up.

Best place ever, so appreciate all everyone has helped and advised me with. 😁

SlowDragon profile image
SlowDragonAdministrator in reply tophobicgirl

BEFORE seeing any thyroid specialist it's ALWAYS recommended on here to get FULL Thyroid and vitamin testing FIRST

Most endocrinologists are Diabetes specialists, not Thyroid

Also even if thyroid specialists, they rarely are interested in vitamin levels being OPTIMAL.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne


tukadmin@thyroiduk.org

How long since you started taking Levothyroxine correctly, on its own, on empty stomach and nothing apart from water for at least an hour after?

Always stick to same brand of Levothyroxine too

Come back with new post once you get results and ranges

phobicgirl profile image
phobicgirl in reply toSlowDragon

Thank you

SeasideSusie profile image
SeasideSusieRemembering in reply tophobicgirl

also private neurologist, he wanted to send me for scans at a cost of £1400

Crikey! Was that an MRI scan? Multiple scans?

About 3-4 years ago I paid for my son to have an MRI brain scan, NHS wait was too long and he was panicking as GP said "I don't think it's a brain tumour............. ". Cost of private consultant was about £200 and I think the MRI was about £400.

phobicgirl profile image
phobicgirl in reply toSeasideSusie

Hope your son is ok. It’s scary to hear things like, I don’t think it’s a brain tumour!

Mine was to be brain scan due to supposed migraine ! Spine scan and lumber scan . Price was for upright open scanner, money maker but guessing I never needed one and if I do is available in 48 hrs 🧘‍♂️

MissGrace profile image
MissGrace

Go for it! Good luck - don’t let them keep you ill and fob you off - keep us informed. 🤸🏿‍♀️🥛 #fightforyourthyroid

phobicgirl profile image
phobicgirl in reply toMissGrace

Fob me of he did but I said my bit and got my referral to endo, next step is to get the tests I need privately, once my arms heal up from being in A&E on Friday, I may be needle phobic but I sure am more stubborn than a dog with a bone 🧘‍♂️😁

in reply tophobicgirl

You go girl!👍

phobicgirl profile image
phobicgirl

Thanks and what a nice encouraging bunch of peeps here, I think I struck platinum 🧘‍♂️

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