Whats going on??

[Bexg]

The last few months have been a bit rubbish. I have secondary hypothyroidism (cause unknown) for the last 23 years (age 17). Up until Oct 2017 all stable and well managed. No nasty symptoms and FT4 and FT3 in the upper quadrant of reference range.

Routine bloods in October 2017. Didn't feel unwell or "over-medicated" but obviously not normal.

Serum free T3 4.6 (3.1 -6.8)

Serum free T4 31 (12.0 - 22.0)

TSH 0.014 (0.27 - 4.2)

Over the past year under the care of a local endo have been reducing Levothyroxine down 250mcg down to 225mcg, down to 225/200 alternate days, down to 200mcg.

Sure enough my FT4 has reduced from 31, to 27, to 22 and despite each dose lowering was horrendous I have now been on 200mcg for around 7 months. The problem has been that with every reduction my FT3 has dropped too. So when my FT4 was 22 my FT3 dropped to 3.2.

My consultant told me that FT3 was irrelevant and a pointless test. Make of that what you will.... personally we don't see eye to eye!

However just had bloods last week

FT4 10.4 (9.0-19.0)

FT3 2.89 (3.0 -4.88)

TSH 0.432 (0.35 - 4.94

I feel really cold and tired. I'm sleeping in thermal PJs and a dressing gown. Falling asleep on the sofa and have terrible short term memory and brain fog. I'm just not sure about how to proceed.

My consultant isn't interested in me and will see my results as "in range" He doesn't even believe that I have got secondary Hypothyroidism.

I have had all Vits checked. Currently self medicating high dose vit B complex, previous Vit B12 198 (189- 800) but need to get all rechecked. And also Adcal 2 tablets per day.

I am not sure why my FT4 shot up to 31 or why it has now dropped to 10, after 22 years of being between 16 and 19.

Would really appreciate your thoughts. Thanks for reading.

[shaws]

The 'expert' has reduced your dose too far, in order to 'fit' your results into a range. The following from above:-

FT4 10.4 (9.0-19.0) - too low should be nearer the upper part of the range.

FT3 2.89 (3.0 -4.88)- too low

and it is T3 alone which improves our health as it is the Active Thyroid hormone needed in order that our body works effectively and relieves symptoms.

T4 (levothyroxine) is an inactive hormone and it has to convert to T3 - Active hormone.

I suspect he is going by your TSH alone.

Maybe he should have a refresher course like the majority of doctors and endocrinologists seem to need. Occasionally you get someone who treats the patient and not the results.

healthunlocked.com/thyroidu...

You should also have B12, Vit D, iron, ferritin and folate tested.

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

[Bexg in reply to shaws]

Thanks for the reply, my thoughts exactly.

I have increased my dose up to 225mcg and will do a medichecks in 6 weeks.

We moved counties and my previous consultant was amazing! Such a shame that we have to deal with such varied care.

The only good this is that as both levels are low I have a better baseline than my T4 being 31 and T3 being a 3.2!!

Hopefully increasing the dose will gently push up both levels again.

[SeasideSusie Remembering]

Bexg

Serum free T3 4.6 (3.1 -6.8)

Serum free T4 31 (12.0 - 22.0)

when my FT4 was 22 my FT3 dropped to 3.2.

Obviously a conversion problem there. Regardless of your consultant telling you that FT3 was irrelevant and a pointless test (which shows what a dinosaur he is), it doesn't make your conversion problem go away. You were in need of a reduction in Levo dose and the addition of T3.

FT4 10.4 (9.0-19.0)

FT3 2.89 (3.0 -4.88)

TSH 0.432 (0.35 - 4.94)

What dose were you on when these tests were done?

Have you had thyroid antibodies tested?

And I agree with Shaws that you should have B12, Vit D, iron, ferritin and folate tested, they need to be optimal for thyroid hormone to work properly.

[Bexg in reply to SeasideSusie]

Thabk you for the reply, the latest tests were done on 200mcg per day

[SeasideSusie Remembering in reply to Bexg]

Considering you were taking 200mcg Levo, your FT4 is dreadfully low in range. It would be interesting to see a Total T4 in this instance, just to see if the Levo is being absorbed, and how much of the Total T4 is "Free".

If I were you I would get a full thyroid/vitamin test bundle with Medichecks or Blue Horizon and get the full picture.

Medichecks medichecks.com/thyroid-func...

Blue Horizon bluehorizonmedicals.co.uk/t... (this one includes Total T4)

[SlowDragon Administrator]

Email Dionne at Thyroid Uk for list of recommended thyroid specialists. Your current endocrinologist is TSH obsessed at the expense of the patient

The most important results are FT3 and FT4

FT4 should be at least in top third of range

FT3 at least in top half of range

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

Vitamins likely to drop when under treated on Levothyroxine

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[MissGrace]

Well, your consultant has managed to make you ill and then shown no interest in you. Well done him! What a star!

And how can he say T3 is a pointless test when they test T3 and RT3 for patients in intensive care and medicate with T3 as it increases chances of survival.

I’m no medic, but it’s not exactly rocket science to work out what the issue is and that you clearly cannot get well on monotherapy and need T3 adding.

Oh it makes me mad!!! I’m sorry you have been treated this way and now have a fight on your hands for adequate treatment.

Excellent advice on here, as always, from Seaside Susie and Shaws. Why oh why do so many endos treat hypos like this. It makes me despair. We know it doesn’t have to be this way, as some people on here encounter a truly compassionate and knowledgeable endo and get proper attention and treatment. It shouldn’t be a lottery though; it should be standard practice.

🤸🏿‍♀️ #fightforyourthyroid