Blood test every 5 years?

[BarbaraG70]

Hi. As I hadn’t had a routine blood test for 18months I requested one yesterday. I was informed that blood tests are now done every 5 years unless my Doctor alters any other medication. Hmm. I’m lucky that I’m not on any other medication and only take Levothyroxine for an underactive Thyroid. Has anyone else come across this or is it just my Surgery cutting back on costs?

[Baobabs]

Sorry but I think this is shocking. My thyroxine levels are still not absolutely stabilised after three years and I have my bloods done every two months. How does your doctor know your thyroxine levels are ok? Perhaps he doesn't think it is important so long as you are 'in range', but you not even be? I wonder what he would do if you said you still felt unwell with thyroid disease symptoms?

[BarbaraG70 in reply to Baobabs]

Yes. I was thinking I would make a Drs appointment and tell him I was feeling tired all the time but really didn’t want to take an appointment from someone who was ill. Might have to go down that route though.

[SlowDragon Administrator in reply to BarbaraG70]

What were your blood test results after 6-8 weeks on 75mcg levothyroxine?

Bloods should be retested again after a further 8-10 weeks to see if stable

Only after two consecutive tests giving similar results are you considered stable and in adequate dose

Recommended on here that 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, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Does GP test vitamin levels too?

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.

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

[BarbaraG70 in reply to SlowDragon]

Hi. Thanks to this Forum I did know about testing early in the morning and not taking Thyroxine beforehand. Dr only ever did the FT4, TSH and FT3 after initial full test at beginning, which was over 5 years ago. I am going to challenge Dr but not my usual one as he knows nothing about Thyroid and I have had to fight all the way. Thank you to everyone who replied. It’s lovely to have the wonderful responses from such knowledgeable people. I can now make an appointment armed with a lot of valuable information.

[Baobabs in reply to BarbaraG70]

Posts like yours make my blood boil! I’m sure you have heard the saying ‘Your doctor is making you sick’. So many GP’s and Endos just don’t seem to understand thyroid disease and folk who could be feeling so much better don’t because of ignorance. I’m a teacher and if children are not happy, thriving and learning I would be rooted out and shown the door. Sometimes I feel we would get better treatment from an engineer, lawyer or an archeologist! I am onto my 8th Endo in three years and I am certain I know more about my condition than he does.

[Pharmaguapa]

Every 5 years?! That's insane! I have been getting them every 6 months and I would think the minimum should be annually. If the GP pushes back ask to see the new guideline document that he has got this from - it may only be a local one or it may be more about cost saving so there may be room to push or formally complain. If he refuses to share then contact the GMC and ask them directly - I am not sure but I would think as a patient you should have access through the freedom of information act.

[helvella Administrator Thyroid UK in reply to Pharmaguapa]

I concur that asking them what guidance they are (or claim to be) following makes a lot of sense. It is often much easier to ask that sort of question (all innocence, of course) than make a challenge - at least as the first step.

[Pharmaguapa in reply to helvella]

BarbaraG70 The NICE guidelines state blood tests 3 months at the start, then 6months until stable and then once a year. So your GP is years of the official guidelines and you are well within your rights to challenge him on this.

nice.org.uk/guidance/ng145/...

[SlowDragon Administrator]

Recommend getting FULL thyroid and vitamin testing privately

GP will almost certainly only test TSH which is completely inadequate

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have hashimoto’s? Ever had thyroid antibodies tests?

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that 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, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

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

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

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 you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

[RedApple Administrator]

BarbaraG70, I assume you are in the UK? If so, maybe mention this from the Nice Guidelines to your surgery:

1.4 Follow-up and monitoring of primary hypothyroidism

Adults

1.4.3 For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

nice.org.uk/guidance/ng145/...

[RedApple Administrator in reply to RedApple]

Of course it does say 'consider'... but every five years is madness, if not gross negligence in my opinion. The idea that a patient could be left on too little or too much thyroid medication for five years is utterly ridiculous and totally unacceptable!

[SlowDragon Administrator]

Looking at previous post you are only on 75mcg...unless extremely petite this is a low dose

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 is in top third of range and FT3 at least half way through range

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)

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

[LouiseRoberts]

A series of comments have been deleted as they were in reply to comments which had been deleted by the person who posted them and they no longer had context.

[elwins]

My doctors calls me in if I have not had a check up after 12 months. They just leave me a message on my answer machine asking me to call them, to make a appointment with the nurse to have my bloods done.

[BarbaraG70]

I am coming to the conclusion that it’s my Drs practice making up its own rules to save money.