Advice on results please

[barb62]

Hi everyone, I have just had these results from Blue Horizon, Hashimoto's since April 2018, on 100 levo, is this now Hyper?

THYROID STIMULATING HORMONE * 0.04 mIU/L 0.27 - 4.2

FREE THYROXINE 19.4 pmol/l 12.0 - 22.0

FREE T3 4.1 pmol/L 3.1 - 6.8

[SlowDragon Administrator]

Your FT3 is far too low. Your conversion is poor

See you are on AIp diet

Do you supplement selenium?

What are your most recent results for folate, B12, ferritin and vitamin D

Assuming these are optimal, then you need addition of small dose of T3

Email Thyroid UK after Jan 3rd for list of recommended thyroid specialist.

please email Dionne


[e-mail]

[barb62 in reply to SlowDragon]

Hi Slow Dragon, yes I do supplement selenium. vitamin levels are good except B12 is double what it should be so have stopped taking it for a while. As you say I am on aip diet and my tpo has reduce by half. I thought maybe I needed to reduce the levo if the diet is working towards healing/reducing tpo?

[SlowDragon Administrator in reply to barb62]

Like many of us with Hashimoto's, you may need small dose of T3

Your results certainly suggest that

Roughly where in the UK are you?

New NHS England Liothyronine guidelines November 2018

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

[barb62 in reply to SlowDragon]

midlands

[shaws Administrator in reply to SlowDragon]

I believe the following is not going to be favourable to those of us who need T3:-

"Patients currently prescribed liothyronine, or levothyroxine and liothyronine combination therapy, for hypothyroidism should be reviewed to initiate switching to levothyroxine monotherapy where clinically appropriate.

Arrangements should be made for switching to be undertaken by a consultant NHS endocrinologist, or by a General Practitioner with consultant NHS endocrinologist support Patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless they meet the criteria in this guidance."

This is likely to lead to 'hell and back' for patients if the professionals deem the patient shouldn't be prescribed T3.

[barb62 in reply to shaws]

Paid into the nhs all our lives and then when you need them...……… I certainly think we are grossly being let down but feel sad for all those patients that rely on the Doctors advice based on accessibility and live a life of misery. My Doc said it could be T3 problems but he cant prescribe if it is. He would not have bought up T3 if I hadn't discussed it because he can't medicate

[shaws Administrator in reply to barb62]

Once upon a time, doctors could prescribe NDT, or T3. Due to the internet which enables us to now search for information, the majority on this forum know more than most doctors or endocrinologists.

We are the ones who suffer and we do look to those who are supposed to be knlowledgeable to help us. They cannot as they may lose their licence if they go against the guidelines of the BTA and RCoP.

We did have doctors (most retired now or deceased) who treated patients as they were taught and then when the recommendation changed, they were bullied into prescribing only levothyroxine. One of our doctors was pilloried by the BTA as he stated that the rules were a lot of nonsense and why couldn't doctors diagnose without tests. He was a Virologist who was sent patients as they had 'mysterious diseases'. This was a while after the introduction of levthyroxine and blood tests.

What he found is that they were symptomatic of hypothyroidism (past doctors had been trained in all clinical symptoms - before blood tests and levo were introduced).

He therefore prescribed what would help patients, i.e. levothyroxine or T3, or NDT (natural dessicated thyroid hormones). NDT is the very original and contains all of the hormones a healthy gland would produce but the Associations seemed to be persuaded somehow that T4 alone be replaced for T4, T3, T2, T1 and calictonin. Big Pharma - I have read - paid doctors (mainly in the USA I believe) to prescribe levothyroxine alone instead of NDT. Then, eventually, in order to be more persuasive, False Statements were made about NDT by the Association in the UK and one of our Advisers sent a Rebuttal and every year for three years requested a response to the Rebuttal but they never did and Dr Lowe died through an accident.

NDT had been in use since 1892 and patients then survived instead of an awful death.

thyroidscience.com/Criticis...

Many on this forum have recovered on NDT and source their own. It can also be trial and error to find one that suits.

[SlowDragon Administrator in reply to barb62]

He can't initiate prescribing T3

But if an endocrinologist diagnoses clinical need and three month trial, then after that, its transferred to GP who Continues care (and prescription costs)

If you have stopped B12 you likely need to restart. Most need ongoing regular supplementing of B12 or good quality daily B complex with folate in, this is often better as keeps folate and B12 levels up

Do you supplement vitamin D ?

What about ferritin levels?

[barb62 in reply to SlowDragon]

In reply to your question Slow Dragon:-

Serum vitamin B12 level 1375 ng/L [220.0 - 700.0]

Outside reference range

Serum folate level 15.0 ug/L [2.6 - 17.3]

Serum ferritin level 178 ug/L [10.0 - 420.0]

[greygoose]

No, hyper would be with an over-range FT3. But, you can't go hyper because you are hypo. It doesn't work like that. You could be over-medicated, but you aren't. Your FT4 isn't even top of the range.

[barb62 in reply to greygoose]

Hi Greygoose, I havent been feeling that brilliant - pins and needs in hands and feet - aching etc, no fatigue though, infact more energy, even though I am not sleeping too well. dr thinks I may be on a little too much levo but asked me to get T3 tested; which he admits he may not understand what to do with them!

I increased my levo in September and felt great with no symptoms and the mid Nov it all changed

[greygoose in reply to barb62]

As SlowDragon says, you probably need a little T3 added to your levo. But, you are not taking too much levo. I suspect your doctor is only looking at the TSH!

[barb62 in reply to greygoose]

yes he is but he hasn't seen my Blue Horizon results yet. He admit he will have to study them before making a diagnosis because he is not clear on the Thyroid system

[greygoose in reply to barb62]

Oh well, at least he admits it. None of them really are, but they all pretend they are.

[barb62 in reply to greygoose]

Actually the blue horizon doctor suggests looking at increasing tsh too!

[greygoose in reply to barb62]

Well, he would. He doesn't know any better. He's just a bog-standard GP, trained by the NHS. He doesn't have any special training just because he works for Blue Horizon - something I do find quite shocking, but still. That's the way it is. BH's doctor's comments really aren't worth having, in my opinion. They only get people worried for no reason.

[Saya85 in reply to barb62]

If you stopped taking b12 it may be that your levels have dipped again.

Restest after b12 supplementation will skew results. You need to be off them for 3-4 months to get a true result

If it has been a few months now you may want to retest - make sure they check active b12 not serum

The Pernicious anaemia forum on here can help you understand and interpret your results

Have you been tested for PA?

[barb62 in reply to Saya85]

What tests should I request?

[Saya85 in reply to barb62]

Active b12 (not serum)

Tests for pernicious anaemia :

Intrinsic factor antibodies

Parietal cell antibodies

You can check the PA forum on here for.more.info too

[Hidden in reply to barb62]

"I increased my levo in September and felt great with no symptoms and the mid Nov it all changed"

How many weeks was that? It sounds like the way I've responded to increases in Levo (T3 never tested so no idea how conversion is). On each increase of thyroxine I felt better after a week or so, then (usually around the 4 or 5 week mark) started to feel worse again. This showed that I would almost certainly need a further increase. Thankfully I was given an increase last time even though TSH was "Within range" at just under 3, but it obviously wasn't enough.

You certainly need an increase in medication because your T3 and T4 levels are still low. Being within range is not good enough. And even if your TSH goes down to zero that doesn't necessarily mean you are over medicated - especially if you do manage to get some T3.

[barb62 in reply to Hidden]

Hi, thank you for your response. so are we saying that T4 can be/should be over 22? also my T3 is mid range, does that mean I am not converting as some have suggested on this thread. If I increase levo will that bring my t3 up?

[Hidden in reply to barb62]

Not sure, I'm no expert - almost all I know has been from reading on here.

If you are not converting properly it's likely an increase in T4 won't help. It seems that a Free T4 just slightly over the top of the range does no harm. But your T4 is already fairly high, and the T3 doesn't seem to be keeping pace. So you probably do need to take a small amount ofT3.

If you became overmedicated you would have symptoms of it pretty soon anyway

[barb62 in reply to Hidden]

Thanks for this, just one more question. How will I feel if I am over medicated

[Hidden in reply to barb62]

I've never been overmedicated! But apparently your heart races, you feel hot, you can't sleep and generally feel unwell.

Problem is that you can sometimes get a bit like that for a short while if you are hypo too, when the dead thyroid cells disintegrate and dump their hormones into the blood. Or if you are like me you may sometimes get hot anyway, even when under medicated. I think it's when your heart really races, not just occasional palpitations, and you just feel really "Wired"

SlowDragon , greygoose , can you help here? I'm rather out of my depth!

[greygoose in reply to barb62]

No, we're not saying that FT4 should be over 22. That would make your conversion even worse, because the T4 would be converting to more rT3 than T3.

You are not converting well. Your FT4 is in the upper third of the range but the FT3 is in the lower third. They should be about equal. So, no, increasing your levo will not raise your FT3 by enough. Because, as I said, your FT4 will then come to the point where it converts to more rT3 than T3, so your FT3 level could even go down. You need some T3 added to your levo.

I can't tell you how it feels to be over-medicated, because despite the massive doses I've taken at time, I've never felt anything other than hypo. But, you are a long, long way off being over-medicated.

[barb62 in reply to greygoose]

Thanks for your time everyone. Think I need a double appointment with the doc!