Underactive thyroid for 21 years

[Notebook63]

I’m taking 75 mcg Levo thyroxine and have regular blood tests around every 6 months and the results always come back normal. What’s normal? I don’t feel normal I feel so tired I fight the bulge across my middle I’ve now been told I have carpal tunnel and high cholesterol. I’m not obese but doctor says I’m overweight. Some days I struggle to get up and get going I look after my little grandson 2 days a week with my husbands help as he knows that I am struggling with energy. I’m 56 is there any comments or suggestions please?

[greygoose]

I'm not surprised you're struggling on that tiny dose.

There's not such thing as 'normal'. When a doctor says 'normal' all they mean is 'in-range'. They do not understand how the ranges work. Just because your results are 'in-range' does not mean they are 'normal' for you. The ranges are too wide.

So, the first thing you have to do is ask for a print-out of your results for as far back as possible - if you live in the UK it's your legal right to have a copy - you need to know exactly what has been tested and what the results are. Or, ask at the surgery if it's possible to have on-line access to your records - some surgeries do that, some don't yet. You will need to sign up for that.

In the meantime, do not try dieting. That would be entirely the wrong thing to do at this stage. You might even need to eat more! But, never, ever take nutritional advise from a doctor. They know nothing about it! Eat clean and un-processed, and avoid all forms of soy like the plague!

I suspect you've been under-medicated and neglected for years. Doctors get complacent, and if the patient says nothing, they're not going to rock the boat. They'll just let you get on with it. So, you really need to get proactive, and start shaking things up a bit.

[Notebook63 in reply to greygoose]

Thank you so much 😊

[greygoose in reply to Notebook63]

You're welcome.

[m7-cola in reply to greygoose]

Great advice!

[greygoose in reply to m7-cola]

Thank you.

[SlowDragon Administrator]

First thing is, do you have any 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.

UK GP practices are supposed to offer 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.

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 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. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

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 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_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Guidelines on dose Levothyroxine required is 1.6mcg per kilo of weight

Come back with new post once you get results and ranges l members can advise on next steps

[Notebook63 in reply to SlowDragon]

Thank you

I’ve had blood tests taken at different times never first thing in am so that’s good advice for next time and I’ve never had tests for b d or other so I’ll ask doc about having those looked at too I’m so tempted to put myself up 25 to 100. Getting a routine appt with my docs are weeks unless emergency have anyone of you ever done that and felt better and told the doc afterwards?

[SlowDragon Administrator in reply to Notebook63]

Yes many do try this, but if you can't get GP to agree to dose increase you will run out of Levothyroxine early

First step is to get copies of your blood test results and ranges and come back with new post for advice on next steps

Either see GP and request further testing, but unlikely to get everything tested. NHS refuses to test FT3 unless TsH is out of range.

Private testing of anything GP can't or won't test

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

[Notebook63 in reply to SlowDragon]

Thanks for advice I don’t take any other meds just 75 Levo i will ring surgery Monday and ask for copies of my results over the last 3 years and book to see a doc as soon as they can fit me in

[SlowDragon Administrator in reply to Notebook63]

Come back with new post once you get results and ranges and members can advise on next steps

You may find only TSH and FT4 have been tested

GP may not be keen to run further tests.

But guidelines to say it's important to test vitamin D, folate, ferritin and B12

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Unlikely to get FT3 or BOTH TPO and TG thyroid antibodies tested, but you can ask

Many patients have to get private testing