Still stuggling

[Stillstuck60]

New to this community and have struggled with weight gain each time my go lowers my levothyroxine. I have congenital hypothyroidism and my dose has been altered throughout my 52 years of being prescribed medication. Over the last 35 years I have gone from 3.mg to most recently 1.75mg, despite me protesting to my GP that this would result in weight gain and feeling tired. I hadn't had a test done at that point but had turned 60! I was told my dose was lowered basically due to the fact my body didn't require the previous dosage! I have read so much about T4, T3 & TSH that I'm now going for tests but just wondered if anyone else had been told the same as me 're age?

[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 or when dose is reduced inappropriately

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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?

Bloods should be retested 6-8 weeks after any dose change. Insist that GP tests vitamin levels

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

Add recent results and ranges if you have them

Or come back with new post once you get results

[Stillstuck60 in reply to SlowDragon]

SlowDragon, many thanks for this. Currently in Turkey for a couple of months, so going to have tests done here by a medical centre that offers all tests you have mentioned, so will update once I've been. 😊

[shaws Administrator]

As you were diagnosed a long time ago now, you may not be aware of the method we should take before blood is drawn.

The appointment is always the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards. This helps keep the TSH at its highest and may prevent a reduction in dose.

Many doctors are like your GP, fixated upon the TSH alone and adjust willy/nilly to keep it in a 'range' when the aim is 1 or lower. Unfortunatley they seem to be somewhat mixed up when our TSH is low and assume we've suddently gone hyperthyroid. They then adjust to try to fit us into a range without considering if our clinical symptoms are being resolved.

thyroiduk.org.uk/tuk/thyroi...