New test results : Hi everyone I had a private... - Thyroid UK

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New test results

HypoFrog profile image
37 Replies

Hi everyone

I had a private blood test done in July showing hashimotos and I also had amazing advice on here saying my T4-T3 conversion was extremely poor. I had RAI in 2011 for hyper and am now hypo. Unsure if I had graves before that. I’ve requested my medical history but it’ll probably take ages.

I spoke to the doctor and he has referred me to the endo which is in September but wanted me to get an NHS blood test. Doctor said he doesn’t think the endo will do anything because my thyroid results are ‘normal.’ 😠 So here are the results.

B12 256

(Was 218 in July)

T4 17.2 (11-23)

(Was 18.9 in July)

T3 4.1 (3.9-6.8)

(Was 3.85 in July)

TSH 2.29 (0.3-5)

(Was 2.34 in July)

Anti-thyroid peroxidase abs 165 (<34)

(Was 89 in July)

What do you think? T4 slightly lower but T3 slightly higher. 🤔 Conversion rates have dropped... T4 is 51.67% and T3 is 6.9% so assume this is even poorer? These were 60% and 20% last time.

The antibodies are double what they were. Doctor said ‘take that with a pinch of salt as they’re different labs ‘when I got the results off him. 🤷🏻‍♀️

Still having symptoms, breathless, low energy, heavy legs, body aches (this comes and goes), weight gain, tired... etc. 🙄

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HypoFrog
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SlowDragon profile image
SlowDragonAdministrator

Before seeing endocrinologist strongly recommend you get FULL Thyroid and vitamin testing

You need Vitamin D, folate and ferritin tested as well as B12

What’s range on B12 result

B12 Looks extremely low

What vitamin supplements are you currently taking?

All four vitamins need to be OPTIMAL for good conversion

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Currently

Ft4 is only 52% through range

Ft3 only 7% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

SlowDragon profile image
SlowDragonAdministrator

Looking at previous post

B12 is very low and folate test was not processed

So you need folate tested by GP

GP should be testing for Pernicious Anaemia

You likely need B12 injections....or if GP not going to agree

will definitely need B12 supplements and Vitamin B complex too

HypoFrog profile image
HypoFrog

Hello and Thank you for the reply. I did get vitamin D done and it was fine as I take high strength tablets. Folate and ferritin tested and fine so didn’t include on the post.

B12 range is 200-900 so he said ‘normal’ but yes it’s low. He said this could be diet.

Yes tests have been 24 hours after levo and first thing before food.

What are the through rates? Are these conversion rates? Think I’ve got confused about what these are. 🤦🏻‍♀️

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to HypoFrog

What’s your diet like...are you vegetarian or vegan?

Please add actual folate result and range

B12 needs improving to at least over 500

Poor vitamin levels often caused by/causes poor conversion

Your recent thyroid results

Ft4 is only 52% through range

Ft3 only 7% through range

When adequately treated Ft3 should be at least 50-60% through the range

You may simply need high dose levothyroxine (Ft4) ...but conversion of Ft4 to Ft3 is currently very low

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

tukadmin@thyroiduk.org

HypoFrog profile image
HypoFrog in reply to SlowDragon

Hi SloDragon... I got my folate and ferritin results.

Ferritin 64 (12-300)

Folate 7.7 (3.9 - 19.80)

A reminder of the others in this message

B12 256 (200 - 900)

T4 17.2 (11-23)

T3 4.1 (3.9-6.8)

TSH 2.29 (0.3-5)

Anti-thyroid peri oxidase abs 165 (<34)

What are your thoughts with the ferritin and folate added?

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to HypoFrog

They aren’t bad

Both ideally half way through range

Folate at least 10

Ferritin at least 70

But assuming B12 Is serum testing done by NHS (not a private Active B12 test) ....B12 is low

Are you vegetarian or vegan?

Have you spoken to GP again re low B12

They may not agree to any further testing as B12 is within range

If no further testing, suggest you start a B12 supplement. Eg Jarrow B12 sublingual lozenges or Better You B12 mouth spray

Plus a 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-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

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 or jarrow B-right are other options that contain folate, but both are large capsules

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

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

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

HypoFrog profile image
HypoFrog in reply to SlowDragon

Thank you. Doctor just said B12 was normal. What other tests would you suggest? The pernicious anaemia?

I’m not veggie or vegan.

I’ll see what endo says before starting any supplements. Although I’m not sure endo would look at B12 although it’s thyroid related would they?

SlowDragon profile image
SlowDragonAdministrator in reply to HypoFrog

An endocrinologist should test for deficiencies in vitamin D, folate, ferritin and B12

But they would unlikely consider a result within range as needing improvement

But patients have found improving vitamins improves conversion of Ft4 to ft3

Eg many Hashimoto’s/Graves patients find vitamin D needs to be at least around 80nmol -100nmol .......but most NHS CCG areas only treat if vitamin D is under 50nmol

Is this endo from Thyroid UK recommended list of thyroid specialist endocrinologists?

Email Dionne for the list, if not got it

tukadmin@thyroiduk.org

Most local endocrinologist are diabetes specialists, and only look at TSH

Aiming to increase dose levothyroxine upwards as first step

HypoFrog profile image
HypoFrog in reply to SlowDragon

Thank you. Yes the endo is on the list!! 🤞🤞

My vitamin D is fine due to taking high strength tablets as I was insufficient.

I do find my T4 result strange as my dose was put up earlier this year and yet the T4 has dropped since.

I wonder if it could be due to thyroid still disappearing from RAI or perhaps has now completely gone.

SlowDragon profile image
SlowDragonAdministrator in reply to HypoFrog

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

HypoFrog profile image
HypoFrog in reply to SlowDragon

Makes sense then due to rapid weight gain recently. 😭😕

Thanks for all your help!

HypoFrog profile image
HypoFrog

Not vegan or veggie. Probably eat too much sweet stuff! Recently cut down on gluten due to hashimotos (though I read this could be Graves) and cut down on carbs and sweet stuff!

I didn’t actually get the folate result on the phone. He just said it was normal but I have requested a copy of the full results. They tested iron too which was normal but unsure on the figure.

I’ve always been kept at the higher end of the T4 bracket previously and my dose was put up earlier this year but it seems to have dropped again.

When it was higher, I still had the symptoms. I’m not sure if a higher T4 also increases my anxiety or not.

I’ve got those Dr Toft copies.

SlowDragon profile image
SlowDragonAdministrator in reply to HypoFrog

What a GP thinks is “normal” means it’s within range ....it doesn’t necessarily mean it’s anywhere near optimal

B12 is very low....ideally should get tested for Pernicious Anaemia before starting any B vitamins...but GP may not agree

HypoFrog profile image
HypoFrog in reply to SlowDragon

Ok thank you very much for your help. GP just kept saying we’ll see what the endo says.

SlowDragon profile image
SlowDragonAdministrator in reply to SlowDragon

Low B12 symptoms

b12deficiency.info/signs-an...

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

ncbi.nlm.nih.gov/pubmed/169...

Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia.

HypoFrog profile image
HypoFrog in reply to SlowDragon

Thank you. I have a lot of those symptoms.

humanbean profile image
humanbean in reply to HypoFrog

Recently cut down on gluten due to hashimotos (though I read this could be Graves)

To prove that someone has Graves' Disease they need to have their TSH Receptor Antibodies (TRAbs) measured. Another antibody that appears in Graves' is called TSI (although I'm not clear if TRAB and TSI are the same antibody with two different names or are two different antibodies):

mayocliniclabs.com/test-cat...

People with active Graves would have extremely high levels of Free T4 and Free T3 - way over the reference range - they wouldn't have the low levels of Free T3 that you have, so there is no need for you to worry about Graves'.

TPOAb and TgAb may appear in people with both Graves' and Hashi's. But neither of these antibodies is proof of Graves' by itself, you'd need TRAB or TSI measured for that. In the following links click on the + signs for more info :

labtestsonline.org.uk/tests...

labtestsonline.org.uk/condi...

pennyannie profile image
pennyannie

Hey there again

As you have already acknowledged yourself, your conversion of your T4 into the active hormone T3 is poor - both these vital hormones will need to be in the upper quadrant of their relevant ranges for you feel well and loose these debilitating symptoms.

Your TSH is too high and you do have room to increase your thyroid homone medication, which will take the TSH down and you'll feel a bit better when you get this number under 1.

However, no thyroid hormone replacement works well if ferritin, folate, B12 and vitamin D are not optimal - and by this I do not mean taking a doctor's opinion on what s/he considers acceptable - sadly they don't get training on vitamins and minerals and seem to believe if you are in the range somewhere you are ok .

We need the blood test results and the ranges as the ranges can be too wide to be sensible.

I now supplement all four of these essential vitamins and minerals as I've come to learn that I feel much better when, for instance, my ferritin is at around 100, which in turn must mean it enables my body to convert better the T4 into T3. - I think the range is ferritin is something like 15 - 150 - so you could be at 16 or 149 and considered " in range and needing no treatment " - well not for optimal health and optimal conversion of thyroid hormone replacement.

It will be in your best interest to get these vital vitamins and minerals tested before the endo appointment and give us a chance to see if your poor conversion of T4 into T3 is solely due to low levels of vitamins and minerals and, or, if you also need to be considered for a prescription for Liothyronine T3.

Since you have had RAI thyroid ablation you have lost your own thyroid hormone production which is said to be about 100 T4 + 10 T3. and I read that T3 is about 4 times more powerful than T4 and that most healthy people utilise about 50 T3 daily just to function.

Personally, I just think it makes common sense that both these vital hormones be on the patients prescription for if, and probably when, they will both be needed to offer the patient some help in regaining their health and wellbeing.

So, as I think as I've mentioned before, you have in effect been down regulated by about 20% of your overall well being by not being prescribed those same two known and able to be prescribed medications Levothyroxine and Liothyronine.

HypoFrog profile image
HypoFrog in reply to pennyannie

Thank you for your reply. I don’t think my doctor will do anymore tests now as he kept saying we will see what the endo says.

I’ve requested copies of the last blood test which does have folate and iron on plus my vitamin d and I have the b12 number. Is that the main ones I need?

pennyannie profile image
pennyannie in reply to HypoFrog

Hey thereagain,

It sounds as though your doctor is out of his depth and passing the buck to an endocrinologists but sadly there's no guarentee this specialist knows thyroid and may well be a diabetic consultant, first and foremost.

Yes the 4 main vitamins and minerals are those previously mentioned, and there are private companies listed on the Thyroid uk website who will undertake blood tests when your doctor isn't able to action these for you, but I've just looked back and you have all the relevant informtion from SlowDragon on here today.

Well yes, when you actually get the numbers keep us in the loop, so we can talk through anything that needs to be actioned.

HypoFrog profile image
HypoFrog in reply to pennyannie

Thank you. The consultant I’m seeing is a thyroid specialist and is on the endo list from thyroid UK and has recommended T3 prescription before so 🤞🏻🤞🏻🤞🏻

pennyannie profile image
pennyannie in reply to HypoFrog

Oh, excellent news, well done and for how long do I have to keep my fingers crossed for you :

HypoFrog profile image
HypoFrog in reply to pennyannie

Haha thank you. Until the 17th September! 🤞🏻🤞🏻

HypoFrog profile image
HypoFrog in reply to pennyannie

Hi pennyannie... I got my folate and ferritin results.

Ferritin 64 (12-300)

Folate 7.7 (3.9 - 19.80)

A reminder of the others in this message

B12 256 (200 - 900)

T4 17.2 (11-23)

T3 4.1 (3.9-6.8)

TSH 2.29 (0.3-5)

Anti-thyroid peri oxidase abs 165 (<34)

What are your thoughts with the ferritin and folate added?

Thank you

pennyannie profile image
pennyannie in reply to HypoFrog

Good morning to you ;

OK - ferritin needs to be increased up and I aim for around 100 :

I aim for a folate of around 20 : I think the folate will increase, as you improve your B12 : Has your doctor suggested anything regarding this level as suggested by SlowDragon ?

So, Asda do frozen little pots of chicken livers : they are clean and mild and I use 1 pot a week to maintain my ferritin level : defrost and flash fry in a little olive oil, and then whizz down into a pate and keep in the fridge : a spoonful each morning, maybe with a little mayo - helps this medicing go down and your ferritin level go up :

I don't know, as there are many options out there, including tablets, syrups and natural water supplements - your level isn't dire, but you'll improve a little if you get a little further up the range.

Typing with fingers crossed - apologies for any typo's.

HypoFrog profile image
HypoFrog in reply to pennyannie

Doctor said the results were normal. It says on the lab report ‘tell patient normal’ 👎🏻

I will speak to endo about them when I go.

pennyannie profile image
pennyannie in reply to HypoFrog

Well, yes, they are in the " normal " range as the NHS is not obliged to write a prescription : my ferritin was " normal " at 22 and I couldn't stand up long enough to watch the kettle boil !!!

Well, my normal is where I feel better for me : I've Graves Disease and have drunk the NHS toxic substance radioactive iodine, poisoned my whole body and burnt out and disabled my thyroid and now also have hypothyroid to contend with and none of this is normal either ????

Being within the range somewhere so not necessarily ok - as it is where you are in the range that gives you the best chance of being in optimal health rather than at the bottom of the range and dealing with unnecessary, disabling symptoms.

We are dealing with an AI disease that can choose to disable our whole body when not optimally medicated.

HypoFrog profile image
HypoFrog in reply to pennyannie

Thanks pennyannie. Yes I wish I hadn’t had RAI. I’d be interested to know if I had or was tested for graves before I had it. I think I probably did and therefore still do if I’m right?

I’ve requested my full thyroid background to try and find out although the doctors moaned at how long this would take.

pennyannie profile image
pennyannie in reply to HypoFrog

I totally understand as I wear the same T shirt -

the anxiety I caused myself asking for answers only compounded my ill health so as you know I backed off and ultimately have repaired myself like Humpty Dumpty ;

pennyannie profile image
pennyannie in reply to HypoFrog

Thinking on - I see above Slowdragon has suggested supplements for B12 and folate - I started off on both these and then after around 2 years was able to drop the B12 and now maintain my B12 and folate with just 1 Igennus Super B complex -

I left things much too long and was very unwell - I'm sure you'll not take as long as me getting back to being well.

HypoFrog profile image
HypoFrog in reply to pennyannie

Thank you. I’ll wait to see what endo says/does. But If I don’t get anywhere, I’ll be sorting it myself now as I’ve had enough feeling crap.

I gave up on doctors a few years ago but didn’t really have much knowledge to know what to do myself so my health has got worse.

Had enough so whether I get the nhs support or not... I need to feel better! Thanks to the advice on here, I can make a start! 🙌🙌

HypoFrog profile image
HypoFrog in reply to pennyannie

Hello pennyannie... I got my medical history but it’s not too helpful.

I mainly wanted to know if I’d been tested or has Graves.

One letter had a diagnosis on the top of ‘thyrotoxicosis probably Graves’ but there had been no test of antibodies at that point as far as I can see. And then later on they’ve tested for thyroid peroxidase antibodies which doesn’t make sense to me as that’s for Hashimotos not Graves isn’t it? However, they were negative.

So it’s still a mystery how I can have Hashimotos now, without a thyroid and I didn’t seem to have it before although ‘probably’ had Graves and therefore probably still have Graves.

pennyannie profile image
pennyannie in reply to HypoFrog

Oh, I'm sorry to read that - it doesn't leave you any further forward and probably leaves you more upset, confused and disappointed in the whole set up.

I have to say I wasn't prepared when diagnosed with Graves either, I doubt many people are, and was totally compliant and trusted in everything I was told.

Back in 2005 there was very little support and it took a lot of courage for me to even question my doctor, some four years ago, when I had gained some understanding of my current situation through this amazing website.

I've had to be my own best advocate, it hasn't been easy, but it was worth the effort.

HypoFrog profile image
HypoFrog

In person 👏👏

HypoFrog profile image
HypoFrog

😂😂He has said he wanted to see me in person. 🤞🤞

SlowDragon profile image
SlowDragonAdministrator

Suggest you reread this post and all it’s replies

Ideally you would find out if you really had Graves’ disease or Hashimoto’s before RAI

But to large extent it’s irrelevant

Graves or Hashimoto’s patients frequently need to be absolutely strictly gluten free

We also need to supplement virtually continuously to maintain OPTIMAL vitamin levels

B12 and folate are too low

Getting all four vitamins optimal is first step, plus strictly gluten free diet

3-4 months later getting FULL TSH, Ft4 and Ft3 test done via monitor my health £26.90

Likely Ft3 will still be low and then you will need small doses of T3 prescribed alongside levothyroxine

Always get same brand of levothyroxine at each prescription

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

HypoFrog profile image
HypoFrog in reply to SlowDragon

Thank you, Yep I’ve re read it all.

I got my medical history and it only ever said ‘probably graves.’ Doesn’t seem like I was ever tested for graves or hashimotos before RAI. Useless.

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