Total thyroidectomy

[Mommabear123]

Hi all, I have graves disease which lead me to have my thyroid removed at 18 in 2012, I have been on levo ever since my dose has always beenbetween 200mg and 100mg, I have recently been put on 125mg and was told to check up in 66 weeks time with full bloods, I spoke to another doctor and he was certain I did not need a blood test so soon to test my levels as levo takes way longer than 6 weeks to get through my body on a consistent dose my question is how lond does is take ideally for thyroid medication to cause results I can feel the results are better already but wanted advise on wether I should go for 6 weeks or 3 month bloods thanks

[SlowDragon Administrator]

Typically bloods should be tested 6-8 weeks after an increase…..but slightly longer after dose reduction 10-12 weeks

But dose shouldn’t be changed up and down like a yo-yo

Sounds like GP only testing and dosing by TSH which is incorrect

Which brand of levothyroxine are you currently taking

Do you always get same brand

Many people find different brands are not interchangeable

Best to stick to one that suits you best

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

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

Low vitamin levels are extremely common, especially after Graves’ disease

What vitamin supplements are you currently taking?

When were vitamin levels last tested

Recommended on here that all thyroid blood tests early morning, ideally before 9am 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 by DIY fingerprick test

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/

[pennyannie]

Hello again ;

After a thyroidectomy it is essential that you are dosed and monitored on your T3 and T4 blood test levels and not a TSH, especially since you have Graves Disease.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body and is said to be around 4 times more powerful than T4.

We generally feel at our best when out T4 is in the top quadrant of the range as this should, in theory convert to a good level of T3 - as it is your level of T3 that gives you your wellness.

Conversion of T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D , inflammation, any physiological stress ( emotional or physical ), depression, dieting and ageing - so whilst we can't control all aspects of our life, we can do something about some things.

The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Some people can get by on T4 only :

Some people find, overtime, that the T4 seems to loose it's effectiveness and need to add back in a little T3 - Liothyronine - to rebalance and replace their own lost thyroid hormone.

Some people can't tolerate T4 and need to take T3 only :

Some people prefer to medicate with Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland.

As previously detailed there is a list of private companies who can run the appropriate blood tests for you if your doctor isn't able to,

This is where we all start off and simply start a new post with the results and ranges and then we can explain where you are and what you can do to help yourself back to better health.

[tattybogle]

is there at typo somewhere re. dose ? your previous post 3 months ago said you'd been on 125cg for about a year and a half.

As for timing of blood test, i reckon 6 weeks is the minimum to allow things to settle .. but 3 months is probably better.

symptom wise, i personally find i feel all sorts of different things during the weeks 2 -5 after a dose change ... so i only take 'how i feel' seriously between weeks 6-12 or longer .

The fT4 test will reflect the new dose accurately after approx 2 weeks ... BUT . that new level of T4 will then change TSH level ..... and a new TSH level will alter the thyroidal output of T4 and T3 ( or not, in your case, since you haven't got one anymore ) but even without a thyroid to alter the T4 level , the changed TSH can still have some effect on your conversion of T4 to T3.. so both T4 and T3 still have the potential to change after 2 weeks..... and those altered T4/T3 levels may then alter TSH again .. and so on until everything finally finds where it's going to settle ... and that's without considering that if the new dose improves how you feel , and as a result you change your activity level ,,, that too may theoretically have a further impact on T4 /T3 and subsequently change TSH level again ....

So it impossible to really say how long is 'correct'... but in general , the longer the better.

TSH can sometimes be very slow to move ...hence the minimum '6 week' recommendation for blood test's.

And if TSH has been very low .. it can take many months to come up again in response a small dose reduction .

[Mommabear123 in reply to tattybogle]

i was on 125 for a year and half i was lowered to 100 a few days after that post and then tested and then put on 125 about a 5 days ago i have always had issues with getting my levels correct and my doses have been changed frequently my range has been between 100-200 of levo since 2012

[Mommabear123]

thank you for your responses i shall go for an 8 week blood test to ensure the changes they made are suitable, i do feel better on this dose rather than the 100mgs at the moment, i have not been able to get a full blood panel results as doctors said not available due to covid, struggling also to find a decent doctor atm as i cant get blood results they just tell me if if needs changing, i also dont know what theyre using to test my thyroid levels, i only know that ive had vit d tested as i was very low 6 months ago and put on supplements, then taken off them, vit d levels were normal during phone call from doctors thats all I have been told

[tattybogle in reply to Mommabear123]

You have a legal right to see your blood test results in UK .

As long as a GP has already seen them first you can just ask reception for a printout of your latest thyroid blood test results . (always best to get an actual printout , as mistakes with decimal point [or ranges] can too easily be made if they tell you them verbally.

But GP's won't give them to you unless you ask, and they would probably prefer you didn't know anyway .... so it's a better idea to get them from reception, or set up online access if it's available (to see test results online , you have to set up enhanced access which needs you to apply and show some ID)

Sometimes the receptionists don't realise you are allowed to have them , or think they will get in trouble for giving them to you .. but if you are polite and persistent and don't let then fob you off , it will usually get sorted out quite easily .

Telephone to say "i'd like to have a printout of my latest thyroid blood test results for my own records ... i'll come in to collect it in a few days time ".. that gives them time to sort out any issue they have with 'having to ask the Doctor first' ,or to ask their superior if they are not sure they are allowed to give them .

(If you want lots of historic results going back along time, it's better to get your medical history using an SAR (Subject Access Request ) This takes about a month, but gives you everything)

The tests you are interested in for thyroid function are :

Test name .......................................................Result ...... lab range [eg]

TSH (Thyroid Stimulating Hormone ) ... 1.3 ....... [ 0.4 - 4.5] .... (ranges differ between labs, so

fT4 (Free T4 ) ....................................................15.6 ...... [ 12 - 22 ] .........make sure you get the ones

fT3 (Free T3 ......................................................4.6 ......... [ 3.1 - 6.8] ......... written after your result)

TSH will always be done ,fT4 may or may not have been done , and fT3 is hardly ever done.

p.s Don't put up with any guff about "what do you want them for ?" , or "do you know how to understand them ?" ..... just smile nicely and say "they are for my records "