Is everyone the same?

[Lynda61]

Hi, I'm 56 years old and I've had an underactive thyroid for about 23 years. I've only ever been treated by my GP. I put on three stone in weight in the year before I was prescribed levothyroxine and I've never been able to lose it until this past year when I've lost about twelve pounds. I had a blood test in January and my GP reduced my thyroxine by 25mcg since when I've put on 6lbs, my voice has become hoarse, I'm sleeping more, having more headaches and I am more depressed. I had another blood test earlier this month and my GP now wants to reduce my thyroxine by another 25mcg. Is this appropriate when my symptoms are getting worse? Am I worrying for no reason? Is there anyone I can contact for information?

[Marz]

Do you have any test results with ranges you could share for people to comment ? Why was your dose reduced ?

[Lynda61 in reply to Marz]

I only got told I was taking too much and needed to reduce my dosage. I am seeing my GP on wednesday - what do I need to ask for? I've always just done what my GP told me to do, they're supposed to know best.

[Marz in reply to Lynda61]

Sadly not. They go by the TSH only. You are only OVER medicated if your FT3 is over range and I bet that wasn't even tested .... so you have a battle on your hands. Please read link below to learn about your thyroid

thyroiduk.org

[Marz in reply to Marz]

You are legally entitled to have copies of all your results - good for monitoring your own health and checking what has been missed. Also makes posting easier here when you can give more informatio 😊

[Lynda61 in reply to Marz]

Got my results - TSH 0.02 (0.27 - 4.2) and FT4 22.5 (12 - 22). They don't do FT3 but she has referred me to endocrinology. I'm on 175mcg and she has now lowered it to 150mcg (levothyroxine sodium) which I haven't done. I have some extra so I'm continuing to take 175MCG for the moment.

[Lynda61]

Thank you all - will hopefully return later in the week with test results.

[SilverAvocado in reply to Lynda61]

Lynda1, when you get your test results make a new post so more people will see it. Good luck!

[SlowDragon Administrator]

Has anything changed recently, like a change in brand of Levothyroxine? Eg to Teva Levothyroxine

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. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Dose should not be adjusted by only testing TSH

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...

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

[Lynda61 in reply to SlowDragon]

Thank you, most of this information is new to me - I don't know if anything apart from TSH has ever been tested. I'm astounded by my ignorance!

[Lynda61 in reply to SlowDragon]

Blood test 3/4/18. I was on 175mcg Levothyroxine sodium. TSH 0.02 (0.27 - 4.2). FT4 22.5 (12 - 22). GP has lowered my dose to 150mcg but I'm still taking 175mcg.

[SlowDragon Administrator in reply to Lynda61]

Just testing and dosing by TSH and FT4 is completely inadequate

Essential to test FT3 at same time as FT4. Test both TPO and TG antibodies (assuming never been done)

Low vitamins are extremely common and can lead to low TSH, high FT4 and LOW FT3

If they don't test FT3 they have no idea if you have good conversion

Unlikely to get GP to test FT3 or antibodies

They might test vitamin levels if asked

Or just get all tested privately

Meanwhile starting selenium supplements may improve conversion and won't affect testing

Do not start any supplements that contain B vitamins before testing and avoid multivitamins