Understanding test results and next steps please

[Jocat]

Gosh, I hadn’t realised it was two years ago I asked you lovely lot for help. Sadly, I just struggled on with life, it’s like wading through treacle.I saw a chiropractor who asked if I have had my thyroid checked…I went to my gp surgery and saw the most compassionate locum. He sent me for thyroid blood tests but only TSH and Free T4…results are;

TSH 5.03 mU/L range 0.32-4.94 mU/L

Free T4 11.2 pmol/L range 9-19 pmol/L

I’ve just seen another GP as the locum was only holiday cover and they’ve said there is nothing to be done. “We’ll keep an eye on it.” Refused any further tests or referral. I asked for a private letter referral instead. She said they don’t do FT3 on the NHS.

I have just read that admins say no discussion on sources or referrals on here but only on private direct messaging. I will be looking in West Sussex.

Do these results warrant a private referral please? The more I read the more confused I’m becoming.

Thank you all so very much. 🤗

[Dahliasanddaisies]

Your TSH is over range. You need to request (very firmly if needed) another blood test in 6 weeks. If that TSH is over range (but below 10) then you can have a trial of Levothyroxene. This is the NICE guidance. If GP refuses test you can write to the practice manager or if you dont have the energy for a fight and can afford it, you can see a private specialist.

You'll unlikely get them to test T3. Most of us members test ourselves using at home blood tests, then you can get your antibodies tested also.

Best of luck x

nice.org.uk/guidance/ng145/...

You want section 1.5.3

[Jocat in reply to Dahliasanddaisies]

Hi Dahlias and daisies,

Thank you so much for your reply. Yes, I think I will get my bloods re tested and go from there.

I just felt it was a wasted doctors appointment, I suppose I was hoping they would say we'll refer you, tablets and I'd begin to have more energy.

Thank you for your message, it means a lot.

X

[Dahliasanddaisies in reply to Jocat]

I know it's super frustrating. You're unlikely to get any sort of referral for subclinical hypothyroidism. You will.need to keep the pressure on the surgery, make a nuisance of yourself if needed. I ended up changing my surgery as my 1st one was impossible to get an appointment. You shouldn't need another GP appointment for the bloods, just enail/patches or whatever (or go in) and ask reception for a thyroid monitoring blood test in 6 weeks. Once those results are in, you can request to see the GP to ask for a trial on medication. It's such a slow process and they make it harder than it needs to be usually.

You can ask for recommendations of private GPs and endos from members if you want to go down that route

[Eggythyroid in reply to Dahliasanddaisies]

hi I'm no good a talkin properly so forgive any spelling mistakes but u seem like u know what ur on about an I wanted to know what it meant if my bloods came back with a tsh of 39.70 an a t4 of 14 I was born with an inactive thyroid an been on thyroxine my hole life an I just want more info about it cos I'm struggling more now than ever an I saw u posted 5 hours ago so I'm hoping u reply please thank you 🙇

[TiggerMe Ambassador in reply to Eggythyroid]

Welcome aboard

With a TSH this high you are needing your next dose increase to 100mcg as you are aiming for TSH to be nearer 1, just read your bio, have you had any recent blood tests? B12, ferritin, folate and Vit D are often low when thyroid hormones are low

[Eggythyroid in reply to TiggerMe]

i had a blood test on the 22nd of August an now they want me to come back in 2 month but ill likely be back earlier than that cos I don't feel too good by the end of the 6 week period. I've had blood test done every 6 weeks so far an everything else is fine/ normal but my tsh is really high an I just wanted to get a better understanding of what it is that's making me feel the way I am an from my tests the tsh keeps going up everytime they increase my dosage so that just confuses me even more. Id appreciate any help you can provide.

[TiggerMe Ambassador in reply to Eggythyroid]

Be sure to get your results for vits and mins and post them up with ranges as there ‘normal’ is well below optimal

You haven’t reached a full replacement dose yet

[Dahliasanddaisies in reply to Eggythyroid]

Hi there, I think it's best if you make your own post asking for support and members can help you x

[SlowDragon Administrator]

what time of day was this test done

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

Just testing TSH and Ft4 is inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

With high TSH and very low Ft4 you ard highly likely to have low or deficient vitamin levels as direct result

Low vitamin levels are especially common when hypothyroid particularly with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Request new thyroid test in another 6-8 weeks including thyroid antibodies and vitamin levels

Or test privately and work on improving low vitamin levels BEFORE requesting GP retest thyroid

Low vitamin levels tend to lower TSH

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[SlowDragon Administrator]

Looking at your age …are you post menopause

On HRT ?

Starting levothyroxine - flow chart

You need 2 tests with TSH over 5 before the GP will consider starting you on levothyroxine

gps.northcentrallondonccg.n...

[Jocat in reply to SlowDragon]

Hi SlowDragon,Thank you so much for replying. My test was 8am and I had had a pint of squash before hand.

I'm on hrt. I will get further blood tests.

I'm taking iron, magnesium, vit c and D, vit B12.

😊