Full thyroid test results - advice please - Thyroid UK

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Full thyroid test results - advice please

Monsie42
Monsie42

Hi all, I recently had some private blood tests and would like some advice on the results. As background I was diagnosed with Graves’ disease at 10 and had my thyroid removed at 17. I am now 39. I’ve been suffering mixture of symptoms for 1 year, namely panic attacks, nausea, general feeling of being unwell, palpitations, back pain, lightheaded. My doctor blames anxiety although honestly the only thing bothering is me how poorly I feel each day :(

17 Replies
SlowDragon
SlowDragonAdministrator

Welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

If yes......Which brand

What vitamin supplements are you currently taking

Vitamin D is ok, might be better higher at around 100nmol

B12 and folate are both on low side

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With such low B12 result taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

healthline.com/nutrition/me...

SlowDragon
SlowDragonAdministrator

Thyroid levels

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

TSH over 2 suggests you are under medicated and your very low Ft3 suggests this too and such low Ft3 will certainly be causing symptoms

But Ft4 is high - if you took levothyroxine BEFORE test then this is false high

reverse T3 is slightly high.

This might improve as you get thyroid levels improves and all vitamins optimal

Are you on strictly gluten free diet, or tried it?

Monsie42
Monsie42 in reply to SlowDragon

Hi, I am on 100 mcg Almus. This was my regular brand and dosage until April last year when due to lockdown I had to change chemists and my brand changed. After months of symptoms my doctor thought I may be hyper so reduced the dosage. In December I insisted on returning to 100 and returned to my previous chemist to get my old brand.

It seemed to help after a couple of weeks but recently I have noticed increase again.

I take vitamin D supplement but nothing else.

Unfortunately the test was taken midday so after I had taken my daily tablet and breakfast.

Thank you for the recommendations on vitamins, I will research and start these. I am not strictly gluten free but certainly will try if you think this could help.

SlowDragon
SlowDragonAdministrator in reply to Monsie42

This was my regular brand and dosage until April last year when due to lockdown I had to change chemists and my brand changed.

Which was different brand.....Teva upsets many many people

So as you had taken levothyroxine before blood test the Ft4 is false high result

You need 25mcg dose increase in levothyroxine

See GP for dose increase

Or perhaps before seeing GP consider retesting doing test EARLY morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

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/

This should give even higher TSH

SlowDragon
SlowDragonAdministrator in reply to Monsie42

TSH should be under 2 as absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

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

Aim is to bring a TSH under 2.5

gp-update.co.uk/SM4/Mutable...

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)."

(That’s Ft3 at 58% minimum through range)

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

tukadmin@thyroiduk.org

Monsie42
Monsie42 in reply to SlowDragon

Yes it was TEVA. I knew I just didn’t feel right on this brand. Thanks very much for the information. I’ll look to get a re-test for more accurate result and then speak to my GP.

SlowDragon
SlowDragonAdministrator in reply to Monsie42

Meanwhile working on improving low vitamin levels

Remember to stop taking vitamin B complex a week before ALL BLOOD TESTS

Only do test early Monday or Tuesday morning and post back via tracked 24 hour postal service

Monsie42 ... of course you suffer from anxiety your medication/treatment needs to be reviewed, blaming anxiety is a cop out!! Your medics should know better....trouble is, many of them don't.

TSH is too high, when medicated it should be 1 or slightly lower

Your FT4 is also very high...it should sit close to 75% through the reference range, your result is 97% through the ref range

Your FT3 is dismally low sitting at only 3.51% through r/range....no wonder you feel unwell.

What thyroid medication are you taking, and in what dose?

Your antibodies are low so unlikely to be thyroid auto immune disease aka Hashimoto's

Your T4 to T3 conversion is very poor so after looking at time of dose and intake of food and drink we need to look at your nutrient levels

High FT4 with low FT3 - poor conversion

T3 is essential to almost every cell in the body and is required in a constant and adequate supply. Your supply is far from adequate!

If you improve your conversion this should raise your FT3 and should lower your FT4, in time your TSH will be lower.

Do you take your levo 1 hour before food or 2 hours after to ease absorption

Do you take your levo no sooner than 24 hours before a test?

You need to raise your vit D and B12 levels....SlowDragon has already given you excellent advice about nutrients

Address the above issues then re- test, if there is no improvement then I suggest you ask for a trial of T3. Refer to the above labs and explain how poor your conversion is. and point out that this is making you unwell. . The problem is that when T3 is mentioned many medics lose their hearing!!

They are wedded to TSH claiming it is the gold standard thyroid test, research indicates this is not the case

TSH is a pituitary hormone and responds to the thyroid hormone level in the blood, if this is low the pituitary sends a signal to the thyroid via TSH to produce more hormone. Conversely if the serum level of hormone is (too) high the TSH level drops

High TSH = low hormone level

Low TSH = high hormone level

TSH only tells a fraction of your thyroid function state. T3 is the significant reading. I guess with your TSH you will be advised to lower your T4 dose....that is unlikely to help.

I'm not a medic just another member (now aged 75 and successfully self medicating with T3) who has had a lengthy, bumpy, thyroid journey along which I had to learn how to resolve my problems caused by nearly 50 years of wrong diagnoses and treatments. T3 was the key to my recovery... I could not have done this without the support of knowledgeable and experienced members here.

Please come back and update us on your progress.....good luck.

Best

DD

Monsie42
Monsie42 in reply to DippyDame

Thanks so much for the reply. Honestly I’ve felt like I’m going mad! I am currently on 100 mcg thyroxine taken at least 30 minutes before food in the morning but I will aim for 1 hour based on your advice. Considering how long I’ve had thyroid issues, I’m embarrassingly very I knowledgeable about all this. I was told after my thyroidectomy ‘take your thyroxine and you’ll be fine’. I’ve always felt not 100% but put it down to other things and got on with life. But it’s just a daily thingnow. It’s been refreshing to hear your views and understand me so thank you. I realise I need to take more control of my thyroid health and not just listen to the doctors.

SlowDragon
SlowDragonAdministrator in reply to Monsie42

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Common for conversion of Ft4 to Ft3 to get worse as we age.....we tend to get lower stomach acid as we get older. Anyone on levothyroxine tends to have lower stomach acid already....low stomach acid leads to low vitamin levels

Low vitamin levels leads to poor conversion.....low Ft3 leads to even lower vitamin levels...it becomes a vicious circle

Many people on levothyroxine find they need to supplement virtually continuously to maintain optimal vitamin levels

Lotika
Lotika in reply to Monsie42

Oh, I wish they didn't just say "take your levo and you'll be fine"; I am sure they mean well, in as much as we would all very likely be fine if they ever give us enough of the stuff, or checked T3 when we said our dose isn't working rather than accidentally gaslighting us by telling us we have anxiety or depression when we're just plain under medicated, which, as we so often see, they bally don't! Sorry for the rant!

Before I sidetracked myself by ranting (I am in the "anger" phase of dealing with 3-5 years of rubbish thyroid treatment, depending on whether or not we want to count the fact that one GP and 2 endocrinologists failed to diagnose it for 2 years at the outset!) I wanted to say that as someone very inexpert, even I can see by your results that you are feeling rubbish *due to inadequate thyroid medication*. So, it's not you, it's not in your head, it is the doctor not being brilliant at thyroid. I have to say, making an effort to see a particular GP at my practice, who admittedly isn't particularly brilliant at thyroid but who loves a blood test and who is absolutely brilliant at listening to his patients, made a significant difference to my thyroid treatment.

Monsie42
Monsie42 in reply to Lotika

Thank you and I’m sorry to see you had your own struggles for so long. Armed with all this information I feel better prepared for a conversation with my GP

DippyDame
DippyDame in reply to Monsie42

You are absolutely not going mad!Like many of us here I was given the spiel, " this little white pill is all you need to make you feel well".....claptrap! Not everyone responds well to levothyroxine

Don't beat yourself up by feeling embarrassed.....despite having been (wrongly) medicated for 20 years I was clueless about thyroid issues when I joined the forum nearly 4years ago! I suffered from " doctor knows best syndrome" and just tried to get on with things.... until I couldn't. And discovered they don't!!

Thankfully I found TUK and a steep learning curve followed!!

By posting you have taken the first step....and that is often the hardest!

Good luck going forward.

Monsie42
Monsie42 in reply to DippyDame

Thank you, I am glad I took this step as you say. Didn’t expect to learn so much

Hello Monsie and welcome to the forum ;

I'm with Graves Disease but went through RAI thyroid ablation in 2005 at age 58 and now manage lingering Graves, thyroid eye disease and hypothyroidism.

A fully functioning working thyroid would be supporting you on daily basis with trace element of T1. T2, and calcitonin plus a measure of T3 and T4 said to be at around 10 T3 and 100 T4 :

T4 - synthetic Levothyroxine is a storage hormone and needs to be converted by your body into T3 - synthetic Liothyronine which is the active hormone that the body runs on and is said to be about 4 times more powerful than T4 with the average person using around 50 T3 daily, just to function.

Your own ability to convert the T4 into T3 can be compromised by low levels of ferritin, folate, B12 and vitamin D as these need to be maintained at optimal levels for optimal conversion of the T4 into T3.

When on Levothyroxine the " accepted " conversion ratio " is 1 / 3.50-4.50 - T3/T4: with most people preferring to come in at around 4 or lower :

So if we divide your T3 into your T4 we get 6.72 and this shows poor conversion. Whilst optimal vitamins and minerals are still necessary I believe this too wide a differential, and in all honesty the logical solution is to introduce a small dose of T3 - Liothyronine and reduce down your T4 dose. Thereby bring both these essential hormones into better balance, and this in turn will also drop down your TSH and your reverse T3 the only result printed in alarmist red ( which is unconverted T4 ) will also come back down into range.

It is essential that your T3 and T4 are balanced, and currently your T3 is barely in the bottom of the range whilst your T4 is nearing the top and this must be making you feel pretty awful.

Personally I believe when there has been a medical intervention and the thyroid surgically removed or ablated in situ with RAI that both these vital hormones should be on the patient's prescription for if, and probably when, both T3 and T4 will need to be dosed and monitored independently to bring them both into balance and restore the patient with a sufficient level of thyroid hormones to give back the patient " their self " :

The thyroid is a major gland responsible for full body synchronisation, your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.

Some people can get by on T4 only, some people, at some point in time, simply stop converting well the T4 into T3 and some people simply need both T3 and T4 prescribed to restore wellness and optimal health.

Having lost your own thyroid you have lost your own T3 thyroid hormone and this equates to roughly 20% of your overall wellbeing and whilst the body is an amazing machine and compensates as best it can, overtime this shortfall will pull you and your QOL down.

Doctors are not able to prescribe T3 - basically down to costs, and local CCG restrict on starting new prescriptions of Liothyronine so you will need a referral to an endocrinologist.

If you go into Thyroid UK who are the charity who support this amazing forum you can apply for a list of " endocrinologists " who we understand are open to considering prescribing T3.

I was refused a trial of T3 owing to my suppressed TSH as I seem to be stuck down at 0.01 : You are much better placed as your TSH is, in fact, too high. and you have an obvious conversion issue for any endocrinologist to immediately recognise.

Elaine Moore has written extensively on Graves, as she too has this poorly understood and badly treated autoimmune disease. She has written several published books and now also runs a well researched website on Graves and other AI related diseases.

I also found a book written by a doctor who has hypothyroidism very interesting :

Your Thyroid and How To Keep It Healthy by Barry Durrant-Peatfield is available on the Thyroid Uk website and we do need to know what this amazing little gland does, so we can try and compensate accordingly.

I am now self medicating with Natural Desiccated Thyroid which is pig thyroid dried and ground down into tablets referred to as grains, and this contains all the same known thyroid hormones as that of a human gland with a known measure of T3 and T4 in each tablet.

NDT was successfully used to treat hypothyroidism for over 100 years prior to the introduction of the guidelines, ranges, and blood tests that were introduced alongside Big Pharma launching T4 - Levothyroxine as the better treatment option for hypothyroidism

NDT is meant to be available through the NHS on a " named person only " prescription but I failed to find a doctor in my area willing to prescribe so now, I buy this myself, and self medicate, and am much improved.

Monsie42
Monsie42 in reply to pennyannie

Hi there. Thanks for sharing your story and the information. I knew the thyroid played a big factor in our health but a lot of this is new information. I’ll be using the weekend to read up on the subject and the book you recommended so I can approach my GP. Otherwise I may look at private options

pennyannie
pennyannie in reply to Monsie42

Hey there :

Yes it's a massive learning curve -

Thyroid uk website is also a good place to start reading up on, and you'll pick up and learn from just reading this forum questions and answers, even if with brain fog, it does sink in.

By all means talk to your doctor about these blood tests, and see if s/he sees the problem - and definitely obtain the Thyroid uk list of recommended endo's as there's little point wasting time seeing people who aren't prepared to support you.

T3 has become something of a postcode lottery - 20 odd years ago your doctor could have suggested Liothyronine to supplement your T4 - however in the UK for reasons best known to the NHS the price of T3 has risen by an exorbitant amount - so the NHS CCGs have suggested restricting the use of this life enhancing thyroid hormone replacement.

Just to add the price of T3 is still low throughout the rest of the World and as with Natural Desiccated Thyroid many people on this forum, finding no treatment option on the NHS other than T4 - Levothyroxine, now self source buying and medicating their own thyroid hormone replacement.

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