43 years on Thyroxine

[Peorge]

I have taken Thyroxine for a long time and I am at my lowest dose, I'm sure I need more - I'm taking 100mcg/125mcg on alternate days. Since last year I have put a stone on in weight, I feel tired and quite depressed.

[Lalatoot]

Only way to be sure is to get blood tests maybe include vitamin tests too.

[nellie237]

Hi Peorge,

My Levo dose dropped down (over about 2yrs ) from 200mcg to 125mcg. It turned out that I was coeliac. Makes no sense to me - malabsorption should have meant my dose increased? Incidentally I put on 1/2 stone in the six months prior to diagnosis, which also makes no sense.

The point I am trying to make is that if your dose has been uncharacteristically dropping there may be something else going on and you need a full blood workup.

[SlowDragon Administrator]

Far too often only TSH is tested and dose inappropriately reduced

Most important results are ALWAYS Ft3 followed by Ft4.....not TSH

Do you always get same brand of levothyroxine

Many people find different brands are not interchangeable

What vitamin supplements are you currently taking

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

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

Ask GP to test vitamin levels

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)

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you get results

[waveylines]

How has your GP assessed your dose of levothyroxine? If it was done on TSH level its already been proven treating by the TSH leads to under treatment. You need your Ft4 and Ft3 level assessing and be guided by that and how you feel.

[tattybogle]

You need your blood test results to know what's going on, it's worth asking the GP's receptionist for a print out of your latest Thyroid Function Test results... the actual results , not the comment after them that say's 'normal' or whatever. I'll copy /paste a reply i've just written to someone else who got fobbed off by the receptionist on their first attempt.

It's also worth asking for the previous set of results ( the ones that led to your dose being reduced)

" Re. the receptionist... how very dare she .

You have a right to see your blood test results. as long as a Doctor has seen them first. and that 's all there is to it. The easiest answer is " for my records", but actually they should not even ask for information like that.. (something to do with not being allowed to collect information without recording it.)

Please don't let that attitude put you off calmly continuing to ask for the information you require.. i suspect that 's exactly why some of them do that.... they know it puts you off continuing.

There is absolutely no need for that attitude of superiority, you are just as capable of understanding them as the Doctor, it's really not rocket science.

Obviously, there IS a sensible reason for them being told not to give results out before a Dr has seen them, ie. you don't want them telling people they've got something terminal before the doctor has discussed it with the patient, and so i do understand why some receptionist's are probably scared of getting this wrong, when they themselves don't understand the results they are looking at.... but that is really not relevant in a situation where routine monitoring of thyroid blood results are concerned and where someone simply wishes to take an informed role in joint decisions about their care. ( just as diabetics do every day)

So ask again, and if you get the same attitude just ask to speak to someone in charge, they usually back down and suddenly 'remember' that they are allowed to give you your results once they realise you are sure of your fact's.

It helps your confidence if you understand exactly what you are asking for, so in case you aren't already clear i'll put a list :-

Thyroid Function Tests (TFT's )

Test ..................................................................result [range]

TSH ( Thyroid Stimulating Hormone) .... 0.0 [?-?]............ always done, its a signal from the pituitary to the thyroid , to ask for more/less thyroid hormone. (higher number = more please)

fT4 (free T4/ free thyroxine).....................0.0 [?-?] ......... sometimes done, T4 is they storage form of thyroid hormone produced by the thyroid , and also what Levothyroxine gives you.

fT3 (free T3 )...................................................0.0 [?-?] ........... unlikely to have been done , but ask. T3 is the active form of thyroid hormone, produced by the thyroid, and also converted in the body from T4.

TPOab (Thyroid Peroxidase antibodies).... 0.0 [<?] ..... Used to diagnose the cause of hypothyroidism as Autoimmune . often only done once, at diagnosis. Rarely repeated.

TGab ( Throglubulin antibodies)... 0.0 [<?]...... Occasionally used instead of TPOab"

You may need to get more comprehensive testing as GP's usually only test TSH and sometimes fT4, but really you need TSH/fT4 and fT3. and vitamin levels are important to check too.

See other replies for where to get affordable blood tests from.

It can be helpful to know your historic Blood results, i got all of mine for 20yrs by filling in an SAR (Subject Access Request), but most people now get them by applying for online access, and then getting 'Enhanced Access' sorted out which lets you see results... but not all GP's have this facility yet.

[DippyDame]

As others advise, you must have a full thyroid evaluation -

Slow Dragon has given you all the info you need to proceed.

It sounds as if your medics are clueless about thyroid disease ( many are) and are dosing by TSH which research has shown is wrong

bmcendocrdisord.biomedcentr...

Your symptoms indicate undermedication.