Newly diagnosed underactive thyroid

[Kymbo66]

I have been informed i have a TSH of 12.5. I have just started taking medication on 50 and going to be tested again in Feb.

Any advice?

[Charlie-Farley]

welcome to the forum 😊

I’m tagging a couple people in who will be able to quickly provide you with a lot of info. SlowDragon , SeasideSusie .

Positives, you actually been diagnosed, your doctor has started you on 50ug of Levothyroxine. You have found this forum rich with lived experience and extremely knowledgeable.

You will get far better advice from this forum than most GPs and a fair few Endos. You do need to understand your own condition and not just be ‘doctored’ to ensure you receive the right treatment.

Click on my face on this reply and it will take you to my profile. My bio is an example of what can happen. Finding this forum saved my life. My GP was clueless and started me on 25ug.

SlowDragon and SeasideSusie and others got me on track. My latest post lists the factors that got me well 🤗

One thing I would say is did the doctor ONLY test TSH?😱 AND if you are on 50ug now February may be a bit too long to wait to get a dose increase - my doctors just went with a see you in three months- I needed a dose increase sooner as you can feel symptoms coming back so listen to your body. If you read nothing else I have posted read my last post. 😉 link below

healthunlocked.com/thyroidu...

And when posting lab results always add the units and the ranges (in brackets) .

You are so lucky to have found this forum. I am well ONLY because of their advice - no exaggeration ❤️

[SlowDragon Administrator]

welcome to the forum

First thing is, do you have any other results?

Ideally GP should have tested thyroid antibodies to see if the cause of your hypothyroidism is autoimmune thyroid disease

Have you also had vitamin D, folate, ferritin and B12 levels tested, or coeliac blood test done yet

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.

Link re access

healthunlocked.com/thyroidu...

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

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

So that’s late November/early December….not February

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

Good vitamin levels helps improve how well levothyroxine works

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

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

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)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies 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

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

50mcg levothyroxine is only the standard starter dose

Typically dose is increased slowly upwards in 25mcg steps over 6-12 months until on approx full replacement dose (usually approx 1.6mcg levothyroxine per kilo of your weight per day….some need higher dose, a few need less)

Bloods should be retested 6-8 weeks after each dose increase

[Kymbo66 in reply to SlowDragon]

I have got my blood results, i will put them on the forum in a bit. I do not undersrand them so hopfully you can help.

[SlowDragon Administrator in reply to Kymbo66]

helpful if you add your age and country on your profile info

Was test done early morning

Please add results and ranges (figures in brackets after each result)

Ideally GP would have tested

TSH

Ft4

Ft3+

TPO antibodies

TG antibodies

Vitamin D

Folate

Ferritin

B12

[Kymbo66 in reply to SlowDragon]

Tests were done at 8.30amm

[Kymbo66 in reply to Kymbo66]

I am also taking vit D and iron as well as 50 L

[SlowDragon Administrator in reply to Kymbo66]

iron supplements must be 4 hours away from levothyroxine and 2 hours away from vitamin D

Vitamin D should be taken with food, one with the most fat in it, so that’s usually dinner and at least 4 hours away from levothyroxine

What dose vitamin D have you been prescribed

Do you know how low vitamin D was?

[Kymbo66 in reply to SlowDragon]

Due to where i live it was suggested i take them as we do not get enough sun. There was test. I bought 3000.

I have been taking them 4 hrs later but together, i will now take them seperately. Thanks for advice.

[Kymbo66 in reply to Kymbo66]

There was no vit D test.

[Jazzw]

Others have said it already, so this is for emphasis.

Don’t let them make you wait until February!

50mcg is highly unlikely to be enough and following diagnosis you should be tested every 6-8 weeks to see how things are going.

[greygoose]

First of all, don't think of what you are taking as 'medication'. It isn't medication in the normal sense of that word. It is thyroid hormone replacement - the thyroid hormone T4 - it is not a drug. It does not cure or heal your thyroid, it just replaces the hormone your thyroid can no-longer make enough of to keep you well.

Did they tell you how to take it for maximum absorption? You can take it whenever you like - first thing in the morning, or last thing at night. On condition that it is on an empty stomach, two hours after food or one hour before food and any other drinks other than water. You should keep it at least two hours away from any other supplements/medication, and four hours away from vit D, iron, calcium, magnesium and oestrogen.

Make sure your next test, whenever it it is - and I agree, February is far, far too long to wait! - make sure that your appointment is before 9 am, because that's when the TSH is highest. Don't eat or drink anything other than water before the blood draw. Leave a gap of 24 hours between your last dose of levo and the blood draw.