Feeling so tired and not listened to!

[Ashrose9999]

I was diagnosed with myxodema when my baby was 6 months old. I have been on 125mcg levothyroxine for almost 2 years and still feeling super tired and struggling to lose weight. My antibodies are still high around 500. My last T3 was 4.2. I've suggested hashimotos to my GP and they've said that it's normal to have high antibodies with a thyroid condition and have never helped me. I need to sleep every single day in the afternoon because I feel exhausted! I've been on so many diets and unable to lose weight I'm just feeling so meh and not listened to

[greygoose]

Hi Ashrose, welcome to the forum.

When was that last T3 tested? And, what was the range? Impossible to interpret results without the ranges, I'm afraid, but it's probably too low.

When did you have your last test? Sounds like you're under-medicated. But, your doctor obviously knows nothing about thyroid because he's totally wrong about the antibodies. You do have Hashi's if they are high. But your doctor probably calls it Autoimmune Thyroiditis, rather than Hashi's. Even so, lots of hypos are hypo without antibodies - even some Hashi's people never have high antibodies.

That said, there's not a lot you can do about it, except treat the resulting hypothyroidism. But, you do need to be on the right dose. You also need optimal nutrients: vit D, vit B12, folate and ferritin. Has he tested those?

Have you tried a gluten-free diet? That helps a lot of Hashi's people because with Hashi's, you're likely to be gluten sensitive.

These measures won't make the Hashi's go away, but they could help you live more easily with it.

[Ashrose9999 in reply to greygoose]

Thank you so so much for your reply! I've added my most recent bloods which were actually in May time now!

I paid for these with medichecks because my gp wasn't keen to keep checking when my levels were apparently in range!

Thanks again ♥️

Thyroid

[Ashrose9999 in reply to Ashrose9999]

Here's my antibodies

Antibodies

[greygoose in reply to Ashrose9999]

Well, they might be 'in-range', but they're pretty low in-range. Most hypos need their Frees up in the top third of the range. Yours aren't even quite mid-range. So, you need an increase in dose.

The antibodies mean you have Autoimmune Thyroiditis - aka Hashi's - as the cause of your hypothyroidism.

[Ashrose9999 in reply to greygoose]

Thank you grey goose you've been a huge help and reassurance that I'm not going crazy! Would you think I need to or an increase in levothyroxine? I'm going to book with a private gp who specialises in hashimotos at the end of the month so hopefully they will be able to prescribe the t3 if needed!

[greygoose in reply to Ashrose9999]

I don't think you need T3 at this point. An increase in levo should help enormously. When you get your FT4 up higher, then you can look at possible conversion issues.

A private GP who specialises in Hashi's sounds amazing! Do let us know how you get on with him.

[SlowDragon Administrator]

First step is to get FULL thyroid and vitamins tested done

Do you always get same brand levothyroxine at each prescription

Which brand of levothyroxine

What vitamin supplements are you currently taking, if any

Also coeliac blood test if not already been tested if not already on strictly gluten free diet

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)

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...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

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

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 too

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...

[Ashrose9999 in reply to SlowDragon]

Thank you so much for your reply! I paid for a full thyroid check with medichecks and was told my vitamin d was low and my fate was 3 so right on the cusp.

Unfortunately I did take my levothyroxine before ALL of my blood tests! I should have thought to avoid until after the test!

Thank you for your reply I appreciate all the information you have provided ♥️

[Ashrose9999 in reply to Ashrose9999]

Folate**

[helvella Administrator Thyroid UK in reply to Ashrose9999]

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[Timbutdim]

Things I've used to combat fatigue, exhaustion and to stay awake until early evening.

Lucozade very good but a lot of sugar.

B complete with B12 made huge difference to stamina.

Advanced ubiquinol 100mg very very good at increasing energy, stamina, good energy exertion/recovery times, could repeat normal daily activities everyday with this suppliment with no exhaustion experienced.

Liquid iron, very good but requires close monitoring and regular blood tests as too much is very bad.