Blood Tests

[Keenbean]

My Daughter is on levothyroxine and her tsh has dropped to 0.03. GP has reduced her medication but the GP advised that a blood test should be done after taking the levothyroxine. I thought that it should not be taken prior to a blood test. Kindly advise. Thanks.

[greygoose]

Either that doctor is very clever or as stupid as a hat stand.

Some doctors say that to give them an excuse to reduce the dose because they FT4 will be over-range. But, if all he's testing is the TSH, it won't make any difference anyway, because the TSH doesn't move as fast as the FT4.

But, it must be said that the majority of doctors haven't a clue about thyroid or about testing, so the best thing to do is smile sweetly, say 'yes, doctor' and totally ignore him.

For our own information we need to see the FT4 24 hours after the last dose.

[Keenbean in reply to greygoose]

Thanks a lot for your prompt reply. We are realising the same about the Dr's. My daughter lost her Parathyroid function after TT in 2019. Now both tsh and calcium levels are fluctuating. As she went to uni in Edinburgh she is not under any endocrinologist. So we are struggling to balance her levels. x

[greygoose in reply to Keenbean]

Does she always have her blood draw at the same time of day? Because TSH levels change throughout the day. It's highest before 9 am and then drops sharply to its lowest around midday, then rises again. So, if the blood draw is at different times, then the TSH will appear to fluctuate.

But, you do know it's not about the TSH, don't you? TSH isn't a thyroid hormone, it's a pituitary hormone. When the pituitary senses that there's not enough thyroid hormone in the blood, it raises TSH output to stimulate the thyroid to make more. So the TSH is just a rough guide to the levels of thyroid hormones. But once it gets below 1 it is totally unreliable. So, if the doctor is dosing by the TSH it will put you on the TSH seesaw: up and down, up and down, impossible to stabilise. And the poor dears are incapable of understanding why! lol

As for endos, the majority of them are diabetes specialists who only have a vague idea of how the thyroid works, and can often do more harm than good. So, I really wouldn't worry about her not having one.

[Keenbean in reply to greygoose]

It's not the same time as it depends upon when we get a slot at the GP surgery. Her FT4 was 44 😢

[greygoose in reply to Keenbean]

If the blood draw isn't always at the same time, then not surprising her TSH appears to fluctuate, meaning you cannot compare them. Why doctors are not aware of this I cannot for the life of me imagine!

Her FT4 was 44 how long after taking her dose?

[Pmb57 in reply to Keenbean]

If the reception team ask me if I need a fasting slot (as with diabetes blood tests) when I’m booking a blood test I just say yes. I usually manage to get an appointment around the same time. I also do the same if booking online.

[Shellian in reply to Keenbean]

Hi Keenbean, Sorry to hear of your struggle with the doctor.

I suggest that you ask to be referred to an endocrinologist. If your daughter has no thyroid and lost parathyroid function, this makes her hypoparathyroid too. Calcium levels are extremely important and can fluctuate really quickly.

I am hypoparathyroid too and for years did not understand the effect this had on my health. It can be very tricky to differentiate between what's a low thyroid symptom and what's due to calcium levels.

What medication is she currently taking to stabilise Calcium levels?

Please look at Parathyroid UK website for more information and advice on managing levels.

Blood tests should include TSH , T4 , T3 , Vit D , PTH, Calcium plus the vitamibs/ minerals ones recommended.

Good luck.

[Keenbean in reply to Shellian]

She is on Alfacalcidol 1. 25 mcg and recently her levorhyeoxine has been reduced to 100mcg from 150 mcg as her t4 was too high. She is also on 1000mg of sandocal a day. We have asked our GP to refer her to an endocrinologist. Waiting to hear from them. Thanks for your reply. x

[Shellian in reply to Keenbean]

I take One Alpha ( alfacalcidol) 1.00microgram, and I take 112 levo a day. (100 plus half a 25 tablet) I manage my calcium by diet. So no calcium supplements. I've got better at knowing when my levels are low, and try and pace myself to manage fatigue symptoms. Does your daughter also take ordinary Vit D tablets? These are also needed. I managed for years without these supplements and ended up with virtually no Vit D. Since supplementing I have been so much better. More energy and my hair (I developed patchy alopecia) is beginning to grow back. Also feel brighter. Vit D is so important.. I take Dr Best Vit D3 less additives then many other brands. Currently on 2000 iu daily but may need 3000 in winter. I can't take more as it seems to affect calcium levels. I have been advised on here, and by other hypoparathyroid to also take magnesium but for some reason this doesn't agree with me, I've tried lots of different brands. I do take K2 too.

Good luck with getting an endocrinologist appointment.

[Keenbean in reply to Shellian]

Yes she does take d3 and k2 as well.. She has been stable for 5 yrs but suddenly last year during her exams her calcium dipped and the GP in Scotland upped both the calcium and one alfa. As a result she suffered from hypercalcemia.. Now tsh is high so the dose has been reduced.. What foods do you take for calcium. She had dairy, sesame seed, poppy seeds, Greek yogurt etc.

[Shellian in reply to Keenbean]

I just try and eat a healthy diet ( as much as I can) I eat food with calcium at most meals but not too much very calcium rich foods at once. Not too much cheese for instance. Meat rich meals also increase phosphorus levels, I think, anyway I get really itchy if I eat too much meat at once. I've also gone Gluten Free.

I imagine the stress caused the drop in your daughter 's calcium. Stress causes havoc in our bodies.

I realised a couple of years ago that it was my calcium levels fluctuating causing me more symptoms and problems than the lack of thyroid. But it's very tricky to work out which is which.

She definitely needs that endo appointment. Hope the waiting list is not too long.

[tattybogle]

See 3rd and 4th replies to this post for references which recommend testing before daily dose / and fasting : healthunlocked.com/thyroidu.... my-list-of-references-......

[Keenbean in reply to tattybogle]

Sure I'll have a look.. Thanks a lot x

[Buddy195 Administrator]

Forum advice re timings of blood draw:

a)complete thyroid blood tests early morning (preferably before 9am)

b) drink only water before the blood draw

C) ensure your last dose of Levothyroxine is 24 hours before the test (ie take your daily Levo AFTER the blood draw).

This ensures highest TSH reading, lowest FT4 reading and offers consistent results. (Please note, this is a patient-to-patient tip)

[Keenbean in reply to Buddy195]

Brilliant.. We will keep this inind before our next blood test. Thanks x

[helvella Administrator]

helvella - Scheduling Blood Draws

Factors to consider when choosing time for blood draws. Includes links to several documents/webpages and previous HealthUnlocked posts.

Last updated 12/08/2024

helvella.blogspot.com/p/hel...

[Keenbean in reply to helvella]

Thank you x

[SlowDragon Administrator]

What was reason for TT?

How much levothyroxine is she taking

What’s the range on Ft4

Ft4 of 44 sounds likely high

How long before test was her last dose levothyroxine

Does she always get same brand levothyroxine at each prescription

is she taking calcium or any other vitamin supplements

calcium, vitamin D, magnesium or iron supplements should be at least 4 hours away from levothyroxine

All other supplements at least 2 hours away

NEVER agree to dose reduction based just on TSH

She needs FULL thyroid and vitamin testing

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation 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 - Hashimoto’s or Graves’ disease

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

Also 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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

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

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

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

thyroiduk.org/testing/priva...

Monitor My Health also now 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...

Randox

FULL thyroid test including both antibodies just £29

Test at home or in clinic

randoxhealth.com/en-GB/at-h...

[Brahmstokerdracula]

Hi sorry to hear about your situation it seems to me that drs don’t know very much about thyroid problems.Im sorry i can’t help in any way because i’m having enough problems with my own. I wish i had never heard the word underactve thyroid or the tb Levothyroxine never been as ill i. didn’t even know i had a underactive thyroid it’s a carry on i hope you feel better very soon.And the same goes for myself take care ⭐️

[pennyannie]

Hello Keenbean and welcome to the forum:

Without a thyroid it is essential that your daughter is dosed and monitored on her Free T3 and Free T4 results and ranges and not a TSH reading and especially if a TSH is seen in isolation.

The TSH was originally introduced as a diagnostic tool to help identify a person dealing with hypothyroid and once diagnosed the patient was then monitored on the T3 and T4 readings.

After the medical invention of either a thyroidectomy or RAI thyroid ablation the -

HPT axis - the Hypothalamus - Pituitary Thyroid feedback loop on which the TSH relies on as working well does not work - as this circuit loop is now open ended as there is no thyroid there to complete the feedback loop and respond to the Pituitary in the ' normal ' manner.

Does your daughter have Graves Disease and why the surgery took place ?

i found the most well rounded of all I researched is that of Elaine Moore - books and website

elaine-moore.com

[Keenbean in reply to pennyannie]

She had follicular cancer on her left thyroid lobe and papillary on her right. So first the left side was removed and then the right. But that's when she lost her Parathyroid function..

[pennyannie in reply to Keenbean]

Thank you :

How unfortunate - so everything I have written still stands as without a thyroid we do need the full thyroid panel run - which I'm afraid is not now the routine in primary care where the cursory TSH blood test is deemed to answer every question one may have regarding anything thyroid and if the World is round or flat - sorry - getting flippant.

A fully functioning 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 said to be around 4 times more powerful than T4.

T4 - Levothyroxine is a pro-hormone and needs to be converted in the body into T3 the active hormone that is required by every part of the body everyday - with the brain and heart needing the lions share of T3 in order for the body to function at some level.

The thyroid is responsible for full body synchronisation and rather like the conductor of the body's orchestra - ordering and pulling together ones physical ability and stamina, overseeing ones mental, emotional, psychological and spiritual well being, one's inner central heating system and ones metabolism.

We generally feel best when the T4 is up towards the top quadrant of its range at around 80% with the T3 tracking just behind at around 60/70% through its range and at around a 1/4 ratio T3/T4.

Some people can get by on T4 monotherapy.

Others find T4 seems to stop working at some point in time and find that by adding in a little R3 - probably at a level similar to that ' lost ' when they lost the thyroid - the T3/T4 hormonal balance is restored and they feel better.

Some can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others find their health and well being restored 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 tablets referred to as grains.

Currently in primary your doctor can only prescribe T4 - the cheapest option and anti-depressants which do not work if the issue is one of lacking enough of the necessary thyroid hormones to relieve symptoms - as after all, that's the aim of any medication.

No thyroid hormone works well until the core strength vitamin and minerals of ferretin, folate, B12 and vitamin D are up and maintained at optimal levels which, amongst other things, forum members can advise on.