Confused and need advice :(

[Aguero]

Hi, I have an underactive thyroid & on 150mg of levothyroxine, which I have been for the last 10years+.

For the last 4 years I have suffered with hoarse throat, dizziness and I sound like I smoke 40 cigarettes an hour. Previous ENT Doctor stated I have Dysphonia, tried speech & language. Never worked. Nothing else tried.

On my latest trip to ENT in Feb, I saw a new Doctor who said it wasn't my thyroid, but to keep taking my Levo as my levels still not consistent. When I questioned him why should I keep taking tablets if it's not my thyroid, he was very abrubt and said he was discharging me!

Firstly, if it's not my thyroid causing my symptoms why would I have to keep taking Levo and secondly can anyone recommend anything for this dysphonia as it is driving me mad and to such an extent that I can't talk over the phone and it's getting very upsetting.

Thank you.

[SlowDragon Administrator]

First thing is, do you have any recent actual blood test results? if not will need to get hold of copies.

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. 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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

Just testing TSH and Ft4 is completely inadequate

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you know if you have Hashimoto’s?

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

Last dose of Levothyroxine 24 hours prior to blood 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

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

For thyroid including antibodies and vitamins

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

Do you always get same brand of levothyroxine at each prescription?

Levothyroxine is inactive (Ft4) and before it can be used in body it has to be converted into Ft3

Good conversion of Ft4 to Ft3 needs good vitamin levels

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 primary 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_...

Come back with new post once you get full test results and ranges

[Aguero in reply to SlowDragon]

Thanks for your reply. My blood test from medichecks has arrived this morning. I will post the results once I receive them back.

[SlowDragon Administrator in reply to Aguero]

Only do the test on a Monday, Tuesday or Wednesday morning

All thyroid blood tests should be as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

If taking any supplements that contain biotin stop these a week before any blood tests as biotin (in most vitamin B complex) can falsely affect test results

Come back with new post once you get results

[greygoose]

Why would you think an ENT doctor knows anything about thyroid? Even endos don't know anything about thyroid! Besides, he was just talking about that one symptom, presumably you have -or had - others, no?

If you didn't have a thyroid problem, taking 150 mcg levo would make you ill. As you've been taking it for 10+ years, I think it's pretty safe to say that you do need it. That's why you should keep taking it.

However, as you still have symptoms - one at least - there's always the possibility that you are under-medicated. Hypothyroidism is not a static disease, our needs change - especially if we have Hashi's - do you know if you have Hashi's? It could be that you are now under-medicated, even though 150 mcg has been good for you for years, or you could even now be over-medicated. When did you last have a blood test? If you've got some recent results, do post them - with the ranges - and let's have a look.

[Aguero in reply to greygoose]

Hi, very true about ent!!! I have lots of other symptoms, all the usual tiredness, bloated, weight gain, dry skin etc...but it's this hoarseness that affects me most.

My thyroid levels have always been like a roller coaster and medication fluctuates between 120g & 150g.

I have purchased a blood test kit as suggested and will send off for recent results.

I have asked about Hashi's but I dont get a definitive answer, it's like they fob me off.

Inve .y results come back i will post on here.

Thank you 😊

[greygoose in reply to Aguero]

My thyroid levels have always been like a roller coaster and medication fluctuates between 120g & 150g.

Does your doctor dose by the TSH? If so, that's bound to give a roller coaster effect. It's the wrong way to dose.

I have asked about Hashi's but I dont get a definitive answer, it's like they fob me off.

I doubt they know. If they haven't tested TPO/Tg antibodies, they wouldn't know, anyway, but even antibody testing results aren't conclusive - you can prove you have it, but you can't prove you don't. However, tests aside, they just don't learn about Hashi's in med school, so don't really know what it's all about.

If your blood test kit shows high TPOab and/or TgAB, then you will know for sure that you do have it. But, 20% of Hashi's people never have high antibodies, and are only diagnosed by symptoms (fluctuating levels of hormones) and an ultrasound of the thyroid.