Further update 1st endocrinology appt and ent

[Nikki31uk]

Well saw the ent today, he told me my thyroid scan is fine, said my hoarse voice is due to tension in my throat and offered speech therapy🙄. Said that as my thyroid levels are within normal ranges, nothing would be done. He spoke to thyroid clinc with who I have an appointment to see tomorrow and as he'd already told me scan was normal they cancelled my appointment saying they would only tell me the same thing and discharge me back to gp. I'm so angry, it's taken two and a half years to get referred to endocrinology and now back to square one 🤬. I don't really know where to go from here

[SlowDragon Administrator]

Sorry you have been so badly let down

Have you had FULL thyroid and vitamin testing done ?

Please add most recent results and ranges if you have any

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

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

Low vitamin levels tend to lower TSH

Presumably you are NOT on any levothyroxine?

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 .

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

Is this how you do your tests?

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...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

BEFORE considering booking any private consultation, ALWAYS get full thyroid and vitamin testing done to take with you (and email over before consultation)

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...Private

[e-mail]

[Nikki31uk in reply to SlowDragon]

My latest tests on 5/8/21 were

TSH 3.47 range 0.27-4.2mU/L

FT4 12 range 12-22pmol.L

FT3 5.2 range 3.1-6.8

TG and TPO were normal

B12 and iron have been low and I’m supplementing to raise them as per advice given previously.

Other vitamins are well withing range. All tests have been taken first thing in the morning before eating and drinking anything as advised on here.

No I'm not taking any levothyroxine

Thank you for replying x

[OudMood in reply to Nikki31uk]

You may benefit from posting the levels of the vitamins with the ranges as we require certain levels to be at optimum health.

As you know most of the lab ranges are ridiculous.

Also, your FT4 is low. It’s literally the lower limit.

I would wait and maybe repeat the test by ensuring you do all possible to naturally have the highest TSH possible as your T4 is likely to drop a tiny bit (which should be sufficient to show a problem to the doctors liking).

[Nikki31uk in reply to OudMood]

Thank you for replying, I've had lots of advice about vitamin levels from posting previously and am working to get low ones into optimal range. My gp will only test tsh and endo was useless. Only found out T4 was low by testing privately and gp was not interested in the private results which also showed my crp was raised and cortisol was high. I feel so ill so am getting desperate, hence I may self medicate xx

[Yeswithasmile]

I feel your frustration Nikki31uk. I am sorry you aren’t receiving any help. There are a list of private consultants on thyroiduk site or The only other advice I can give you is source some Levothyroxine privately and take control of your health by doing it yourself. As a fellow sufferer I can strongly advocate self help.

[Nikki31uk in reply to Yeswithasmile]

Thank you for replying, I’m so fed up and at a loss of what to do next. I cannot afford to go private at this point in time so think I’ll have to take control of my health by sourcing some Levothyroxine if the Drs won’t help me, they’ve not given me any choice really. Can anyone tell me how to go about sourcing my own meds as I’ve no clue where to start looking x

[Escapologygirl]

My levels are in range and I have a great gp who listens and I still get the hoarseness from time to time too. Wouldn't waste any more money on endocrinology apps as they only care about diabetes patients anyway

[Litatamon]

Your b12 - what was the number?

You could have an absorption issue. And some people have no change in symptoms without shots.

[Kimkat]

I have been through the Ent machine after having my last partial thyroidectomy, my voice was so hoarse and sore all of the tone, I was referred to speech therapy, which if I’m honest didn’t really improve it and now a few years down the line it’s worse than it’s ever been. I was sent for a gastrophy (I think that’s the name) a couple of weeks ago and they have ruled out cancer, which is a relief but nothing has been mentioned about the fact that I am in constant discomfort and it really is difficult to talk sometimes. The only advice I was given, was to increase my omeprazole when it’s playing up! I give up 🤦🏼‍♀️