Advice Needed please

[Marisa]

I have had my thyroid removed at least 10 years ago and a year ago was discharged from the hospital and having to have blood tests etc. My GP is now involved with me and already having reduced my levothyroxine is wanting to dom another blood test in December. I think I read somewhere that you should avoid taking levothyroxine before blood test. Does this apply to me with no thyroid. Sorry to be a nuisance but I know more about Chronic Lympocytic Leukaemia as have had it since 2006 and that has always been my main concern.

[TiggerMe Ambassador]

We always recommend testing 24 hours after last dose of levothyroxine, water only and ideally a 9am draw so that all tests are comparable

[Marisa in reply to TiggerMe]

Thank you. So I have to drink water only ….no coffee or tea?

[TiggerMe Ambassador in reply to Marisa]

Afraid so 🙃 water only before test, do you take any supplements that contain biotin, if so worth stopping these 5 days before testing as it can effect the results (but only if on a high dose)

[pennyannie in reply to Marisa]

Hello Marisa and welcome to the forum :

No one is ever a nuisance on this forum - and that includes - you :

A fully functioing working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 being the active hormone and said to be around 4 times more powerful than T4 - which is Levothyroxine and your medication.

We generally feel best when on T4 only when the T4 is up in the top quadrant of its range at around 80% through its range with the T3 tracking just behind at around 70% through its range - and / or at around a 1/4 ratio T3 to T4.

The body runs on T3 not T4 - and in order for T4 to convert into T3 well in the body we do need optimal levels of core strength vitamins and minerals - so maybe ask that your ferritin, folate B12 and vitamin D are run as well as your Free T3 and Free T4 and we can advise where in the ranges - you are likely to feel at your best.

[Marisa in reply to pennyannie]

Still trying to understand. I have no thyroid so therefore T4 which is Levothyroxine will try and convert into T3? Do I need to ask for ferritin, folate B12 and vitamin D as well. What do you mean by Free T3 and Free T4?

[SlowDragon Administrator in reply to Marisa]

I have no thyroid so therefore T4 which is Levothyroxine will try and convert into T3? Do I need to ask for ferritin, folate B12 and vitamin D as well. What do you mean by Free T3 and Free T4?

Yes ideally, at least once a year, test FULL thyroid and vitamin levels

What was reason for thyroidectomy

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 when hypothyroid, especially with autoimmune thyroid disease and/or on levothyroxine

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

VERY important to test TSH, Ft4 and Ft3 together

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and 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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[Marisa in reply to SlowDragon]

They found I had Thyroid cancer. Am currently taking Vitamin D3 and magnesium. I finished targeted therapy for CLL in July 2024 (a course of funded 2 years)

[pennyannie in reply to Marisa]

That's ok -

Yes T4 converts to T3 in the liver and circulates in the blood along with T4 and your body uses both hormones as and when needed.

The brain and heart take the lions share of your T3 and the more energy you expend the more T3 you will need -

so you need a high level of T4 in order to be able to convert to a high enough level of T3 to do all that you need and want to do in the day and also restore, repair and replenish your body when asleep ready for the next day.

Some people can get by on T4 only thyroid hormone replacement.

Other people have trouble converting T4 into T3 and need to take a little T3 with their T4 - making a synthetic T3/T4 combo - with the dose of T3 - Liothyronine - likely at a similar dose to that their thyroid once supported them with :

Some find T4 does not work well for them - and find they need to take T3 only - Liothyronine - as you can without T4 - but you can't live without T3.

Whilst others find that they feel best taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids - dried and ground down into a powder and then made up into tablets referred to as grains with each grain containing a stated measured dose of both T3 and T4 thyroid hormones along with the trace elements of T1. T2 and calcitonin.

Free T3 and Free T4 results show the ready to use T3 and T4 found in the blood and body tissues rather than ' bound ' T3 and T4 which is attached to proteins carrying it through the body and not ready to use.

In order to know how well you are able to convert the T4 into T3 - we need a blood test including these 2 vital thyroid hormones -

Many hypothyroid forum members find they have a slowed metabolism and struggle to extract key nutrients from food no matter how well and clean they eat -

and we know that when we maintain optimal levels of ferritin, folate, B12 and vitamin D our ability to convert and utilise the T4 improves which in turn improves ou health and well being.

So yes - your blood test should be a TSH + the Free T3 and Free T4 result and you can ask your surgery if they will run the vitamins and minerals at the same time for you.

In primary care your doctor can only prescribe T4 - Levothyroxine and you will need to be referred to a NHS endocrinologist for any other treatment option:

In primary care you may just get a TSH blood test - which is why many forum members run their own blood tests and the vitamins and minerals and monitor themselves and then better able to advocate for themselves when they then see the doctor.

Presumably having just been discharged from your consultant you have a discharge letter detailing your TSH, and T3 and T4 blood tests ?

[Marisa in reply to pennyannie]

Thank you for taking the trouble to answer. In response to your last question, the discharge letter didn’t give any details.

The blood test is a thyroid Function Test and the clinical information part is to monitor, aim for TSH close to 2 (whatever that means).

]Does this mean that T3 and T4 are included?

Yes, I will certainly try and ask the GP to run the vitamins and mineral test at the same time. I don’t really know my GP as I have always been under the hospital and now I find I am seeing different GP’s

[pennyannie in reply to Marisa]

OK - so the TSH range is around 0.27 - 4.50 - and doctors are advised once the patient is on T4 thyroid hormone replacement to keep the TSH under 2 -

The reality is many of us feel much better when the TSH is under 1 and towards the bottom of the range -

as happens as the T4 builds up in the blood stream to around 80% through its range - which should convert to a good high level of T3 as it is T3 that runs the body not T4 .

Optimal conversion will see a T3 at around a 1/4 ratio of the T4 -

so the higher the T4 is in the range - the higher the T3 should be -

eg: a T4 at 20 and in the range could see you with a T3 at 5 and in the range -

whereas a T4 at 14 and in the range would see you with a T3 at 3 .50 and in the range

and we need optimal levels of T3 and T4 for optimal health and well being -

There is a big difference in this level of T3 for someone who is hypothyroid - though both are in the range and considered acceptable to someone not with hypothyroidism and you might wonder why the fuss between 3.50 and 5.00 - it's just a digit or two -

but for someone with hypothyroidism it could be the difference between being well and being full of joint aches and pains, stomach and bowel issues, headaches, insomnia, putting on weight , losing weight, reduced cognitive function - feeling like you are walking around with permanent flu - too exhausted and unable to work - and or live life as before the diagnosis primary hypothyroid - and the list of symptoms goes on and on, as hypothyroidism is a chronic long term multi organ health issue and the symptoms insidious.

Maybe go into the Thyroid UK website which is the charity who supports this patient to patient forum and start reading around on all things thyroid - thyroiduk.org -

There is a page detailing symptoms of hypothyroidism - maybe this might be of interest and there is also a page detailing the private blood test companies that many members have been forced into using as just testing a TSH - is not acceptable if one is wanting a better health outcome.

The Laboratories now just run a TSH reading and operate a cascade system of blood tests, and if the TSH anywhere in the range no further blood tests are run -

If the TSH is not in range - a T4 will be run - if the T4 is out of range a T3 gets run - it's all about costs - and though this differential is but about £1.00 per bio marker this is now the system in place - and why forum members pay to get their results and then present same and ask questions of their NHS doctor.

Without a thyroid your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop is broken as you have no thyroid there in situ to complete this circuit loop on which the TSH relies on as working - and currently there are no guidelines for those of us without a thyroid and why we chose to organise our own blood tests.

There is a lot to take in and understand - please don't stress out with all this information - it will fall into place given time - just sleep on it - and read around on the forum and the Thyroid uk website and ask questions - and we will try and help and support you any which way we can.

P.S.     Marisa - I've just added a little bit under - which actually answers your question as it was well past my ' best before ' time of day and I lost the thread a bit - just hope it all makes some sense - !!

The TSH is automatically tested - the Free T3 and Free T4 are not routinely tested - so you will need to ask for T3 and T4 as you will for the co-factors that enable the T4 to work well and convert to T3 - namely ferritin, folate, B12 and vitamin D .

[humanbean]

The blood test is a thyroid Function Test and the clinical information part is to monitor, aim for TSH close to 2 (whatever that means).

In Hypothyroidism, with or without a thyroid, if the body needs more thyroid hormones the TSH will rise. If the body has sufficient thyroid hormones TSH will drop. TSH (Thyroid Stimulating Hormone) is produced by the pituitary, not the thyroid.

Your doctors saying that your TSH should be around 2 are wrong. They would have to keep you on too low a dose in terms of thyroid hormones to keep your TSH at around 2.

Healthy people with healthy thyroids, on average, have a TSH of around 1.25. See this graph and read all the blurb :

web.archive.org/web/2004060...

Unfortunately, doctors rarely pay attention to patients and their symptoms when it comes to thyroid hormones and TSH, and they are only interested in TSH, rarely the levels of Free T4 and Free T3. They often want TSH to be around 2, butrarely even bother testing the levels of Free T4 and Free T3. Free T3 is the most important level - too low a level and the patient feels hypothyroid, too high a level and the patient feels hyperthyroid.

[Marisa]

thank you. Oh my goodness. My head keeps spinning with all this newly acquired info. I can understand most but will find it difficult to explain it to somebody, most importantly the GP! I have already had my levothyroxine reduced from 150 mcg to 125 mcg. I think you are right in saying that they want the TSH level to be around 2. I’m not even sure if I have met the GP who requested my test on this. And I suppose when it is around 2, they will not badger me for further tests. Will definitely try to get Free T4 and Free T3 tested and the minerals and vitamins. I have my doubts though whether I will be successful.

[pennyannie in reply to Marisa]

I'm guessing this reply for me ?

In order to ensure a forum member sees your reply to them - make sure you reply to them inside their post using the Reply tab/box - as then their name comes up as you start replying to them and they get an email telling them that they have a message :

Yes - you just need to hope the doctor you see has an understanding of how to treat primary hypothyroidism - my doctor was the ' thyroid lead ' in a group practise but it didn't help me get the most appropriate treatment.

You can read of any forum members history / thyroid journey by pressing on their Profile Icon alongside any comments they make -

and if you get lost reading around -

simple press your Profile Icon which takes you back to all your have written and all your replies since starting your thyroid journey on this patient to patient forum -

and on my laptop my Profile icon is sitting top right on this screen where you'll see it alongside My Hub - Chat - Post - Alerts and Menu icons :

[Marisa in reply to pennyannie]

Yes. That reply was for you. I wrote it very early before getting ready for invigilating and I didn’t have the heart to delete it and start all over again. I’m so pleased you found it!

Thank you for the tips as well and for making the effort to reply back. It is much appreciated.

[pennyannie in reply to Marisa]

You can edit your post by going back into it by pressing the More Icon and then selecting Edit and then press edit response when finished :

You can also go back in by the More button and then typing an @ and directly start typing their name and as you type a tab pops up offering you name matches and you select the one you want and the type goes blue - and the person gets sent a message.

[Marisa in reply to pennyannie]

Thank you

[Tina_Maria in reply to Marisa]

Actually, if you had thyroid cancer, the advise usually is to keep the TSH below 0.5 or even lower, as this will insure that the cancer will not come back. In many cases, patients in general do not feel well on a TSH of 2 and most are much better with a TSH around 1 or lower. But it is very much an individual thing. GP's always go twitchy, when the TSH goes low and reduce medication on the basis of it, but for specific cases, such as thyroid cancer, low TSH is a necessity.

I have attached a paper that discussed TSH suppression in thyroid cancer, that might be of interest.

pmc.ncbi.nlm.nih.gov/articl...

[Marisa in reply to Tina_Maria]

thank you. Very interesting reading to challenge my GP!