Test results help: Hello, I posted on here... - Thyroid UK

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Test results help

Coop20 profile image
30 Replies

Hello,

I posted on here three years ago with the same problem and wondered if anyone can shed any light on my thyroid test results from 8th July 2020 below. They say I’m above high reference so what would you say doctors should be suggesting with this?

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Coop20 profile image
Coop20
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30 Replies
Lalatoot profile image
Lalatoot

What are you taking by way of thyroid hormones?

Coop20 profile image
Coop20 in reply toLalatoot

I have never been diagnosed and i am on no treatment.

Lalatoot profile image
Lalatoot in reply toCoop20

I would think that your results merit treatment.

Coop20 profile image
Coop20 in reply toLalatoot

As i said in my other message below it really kind of upsets me that they’re saying it won’t be taken further, do my symptoms and now results mean anything?

greygoose profile image
greygoose

Well, there's no doubt about it. You are hypo and they should be diagnosing and prescribing levo. Your TSH is too high - over 3 is hypo - and your FT4 is only 22.06% through the range, when it should be at least 50%. Have you ever had your antibodies tested?

Coop20 profile image
Coop20 in reply togreygoose

Thanks for both your replies! I’m almost in tears as this is an ongoing battle for me for almost 5years plus really. Never have i had any further tests than these through my GP here in the U.K. (should have mentioned that) my symptoms make me so upset that nothing is being done and I’m 30 so i feel like they’re not bothered. My doctor has sited it with “no further action”

I just want SOMEONE ...ANYONE to take this seriously.

greygoose profile image
greygoose in reply toCoop20

UK doctors will not take it seriously until TSH reaches 10, I'm afraid. I didn't realise you were in the UK, because that TSH range is not the usual one we see. But NHS doctors ignore the range, anyway!

If you were self-treating, did you feel any better? What were you taking? And how much?

Your FT4 is not 'normal', but the way. It is in-range, but too low.

SeasideSusie profile image
SeasideSusieRemembering

Cooper9490

You were self medicating 3 years ago. Why did you stop taking NatureThroid?

In the UK your TSH has to reach 10 for a diagnosis of Primary Hypothyroidism.

If TSH is over range with postive antibodies you should get a diagnosis of autoimmune thyroid disease (Hashimoto's) and be started on Levo.

A normal, low or minimally elevated TSH with a bottom of range/below range FT4 should be investigated for Central Hypothyroidism where the problem lies with the pituitary or the hypothalamus rather than the thyroid gland.

Coop20 profile image
Coop20 in reply toSeasideSusie

Hello!

I went private then and couldn’t afford it at the time because again my doctors didn’t do anything unfortunately.

I don’t know if i have positive antibodies, can’t remember if i had that then to be honest. So maybe i shouldn’t be taking it further and just live with it?

So according to those results here above my TSH is high and FT4 is normal so they should be at the very least investigating further? What would they do next?

Thankyou for your responses i really appreciate it

Lalatoot profile image
Lalatoot in reply toCoop20

No your FT4 result is not normal. It is in the normal range.

Your over range TSH is telling you that it is needing more hormones therefore your FT4 result is too low for you.

We need our optimal levels not just somewhere in range.

Maybe your optimal level is near the top of the range which is why you are symptomatic.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies

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 .

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...

Medichecks Thyroid plus ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

See GP for further testing

You may need to get full testing privately if GP unhelpful

Coop20 profile image
Coop20 in reply toSlowDragon

Thankyou for this, i guess I’m going to have to go private properly and get the further tests as my GP has basically said even with these results there’s no further action. I don’t know if it’s relevant but they’ve also sprung on me that apparently I’m high risk for diabetes as well?! Any link?

SlowDragon profile image
SlowDragonAdministrator in reply toCoop20

Your GP could and should do further testing

Presumably diabetes reference ....GP means you have high HBA1c

What time of day was this thyroid test done?

Coop20 profile image
Coop20 in reply toSlowDragon

Yes the diabetes bit says this...

Diagnostic HbA1c

Haemoglobin A1c level - IFCC standardised 33 mmol/mol

Comment Review the patient's personal risk and treat as 'high diabetes

risk' as clinically indicated.

And i had my full bloods done on Wednesday this week at 9:10.

SeasideSusie profile image
SeasideSusieRemembering in reply toCoop20

Cooper9490

I don’t know if it’s relevant but they’ve also sprung on me that apparently I’m high risk for diabetes as well?!

Haemoglobin A1c level - IFCC standardised 33 mmol/mol

Comment Review the patient's personal risk and treat as 'high diabetes risk' as clinically indicated.

I think you may have possibly misinterpreted that.

33mmol/mol is an excellent result for a HbA1c test. Between 42-47 is pre-diabetes and 48+ is Type 2 diabetes.

I think the comment is standard blurb that comes with every HbA1c test which says that the GP should do a personal risk assessment and, the result of which, if clinically indicated should treat as high diabetes risk. I don't know what's involved with a personal risk assessment but your HbA1c result definately does not suggest pre-diabetes or that you may be at risk, far from it.

It's a bit like some labs put the thyroid ranges for pregnancy 1st, 2nd and 3rd trimester along with thyroid results, as well as the range for non-pregnant patients, but they put it for all thyroid patients, not just pregnant ones (they wouldn't know if they were pregnant).

Coop20 profile image
Coop20 in reply toSeasideSusie

Ah ok! I wasn’t sure i was reading it correctly or not!

tattybogle profile image
tattybogle

Cooper Hi, you can get diagnosis in UK NHS with two over-range TSH's (within 3 months) and symptoms . i was, with TSH 5.7 rising to 6.8 when tested again 6 weeks later.

TSh does not have to rise as high as 10 and you do not have to have antibodies.

NHS Thyroid guidelines allow GP to start a trial of Levothyroxine in these circumstances.

i'll find you the link to the guidelines so you can wave it under your gp's nose....

EDIT; HERE IT IS..

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

PAGE 13.

TREATING SUBCLINICAL HYPOTHYROIDISM

1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical

hypothyroidism who have:

• a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions

3 months apart, and

• symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the

level remains raised, adjust the dose. If symptoms persist when serum TSH is within

the reference range, consider stopping levothyroxine and follow the recommendations

on monitoring untreated subclinical hypothyroidism and monitoring after stopping

treatment.

shaws profile image
shawsAdministrator in reply totattybogle

No-one could diagnose me through symptoms - I even had an operation on my throat (which was completely wrong and the surgeon couldn't tell the difference between a swollen thyroid gland or a lump in throat).

Even when my GP, finally, got instructions about my blood test he phoned to tell me I had nothing wrong (I had told him before that I'd have to pay for a private test (I had no knowledge about hypo at that time). He reasurred me that he would get all the tests I required.

Unfortunately, he thought (when he phoned) that I had no problems as all my tests were good'. He seemed to miss a result of 99 TSH. Fortunately I had my own test the following day and it was 100, and that's when the hospital phoned the surgery to ask what was going on.

That was my initiation into hypothyroidism.

tattybogle profile image
tattybogle in reply totattybogle

I've added it to my reply above

Coop20 profile image
Coop20 in reply totattybogle

This frustrates me as my doctors won’t take it any further, even though I’m the past i have been tested over the three month period multiple times it’s ridiculous isn’t it?

Why are my doctors seemingly not adhering to guidelines?

I think for me as i said i will have to be going private sadly and paying!

tattybogle profile image
tattybogle in reply toCoop20

These guidelines only came out last November. Prior to that there were no NHS guidelines for treating Thyroid Disease......... Maybe GP hasn't read them yet ?

Take a copy in to show them.

EDIT;

Just for reference T4 does not have to be out of range according to Guidelines. (mine was mid range) Just 2x over range TSH ,with symptoms.

Coop20 profile image
Coop20

Well I’m going to try to talk to my doctor on Monday but there’s not appointments over the phone with her until the 20 something of July! So if my tsh is high and t4 is normal they should still be doing something? I am clearly completely useless with all this so I’m sorry if everything I’ve been saying isn’t quite clear!

tattybogle profile image
tattybogle in reply toCoop20

As long as you are under 65 yrs old(!).........If TSH over- range (even if T4 is normal) and you have hypothyroid symptoms then they should re test your TSH in 3 months time. If it is still over range then,and you still have symptoms ,then they CAN give you a trial of Levothyroxine for 6 months to see if it helps symptoms ......

It doesn't say they must..... and it doesn't say they have to do more than 'Get TSh back into range' . But it's a start. So......

Get them to Acknowledge this Latest TSH is over range.

(If they wont accept this blood test because it's private? then invite them to do their own)

Tell them your symptoms.

Get them to agree to re test in 3 months .

If they wont agree to that now , go back in 2 months and three weeks time and moan about your symptoms until GP agrees to a blood test to get you out of the room

Get that blood test done, and if Tsh is still over range, and you still have symptoms, ask for a 'Trial of Levothyroxine' to see if it helps your symptoms.

If GP says no to that , then ask for an explanation in writing why GP is not following NHS guidelines in your case.

that should probably do it .

Best Wishes

Tat.

Coop20 profile image
Coop20 in reply totattybogle

Thankyou! I’m 30 years old! That helps, i will be calling and asking to speak to them on Monday so we’ll see what happens, i have had majorly bad skim problems for a while now (only getting worse) not sure itching is a symptom or not but it’s so severe that I’m getting bruising from the scratching, i literally can’t help it.

I don’t know if this is normal or not but i also in the past have had fluctuating blood test results upon retesting after three months, sometimes when I’ve retested it’s been back to normal or it goes low or even higher? Surely that’s not right and maybe i have nothing to worry about.

tattybogle profile image
tattybogle in reply toCoop20

From what i've read on research papers, the majority of the population without any thyroid trouble will have a TSH that is under 2, and it doesn't move about hardly at all through their life time , except to get slightly higher as they get older. It will change during an acute illness, but then go back to whatever was 'normal for you' on recovery.

There will be some people who's 'normal' is at the top of the [ range ], and some people who's 'normal' is at the bottom, but that will always be their 'normal for them' and doesn't move much over their life.

So the 'wandering round' you are experiencing does beg the question 'why', as well as making it bloody annoying to try and be taken seriously.

It's like trying to get a mechanic to fix an intermittent electrical fault on your car..... frustrating !

Coop20 profile image
Coop20 in reply totattybogle

It is like that at the moment, if everyone seems to be saying the same that i should be at the very least being re tested in three months...i question doctors as they have a responsibility to follow up on this. It’s quite worrying that they’re just happy for people to suffer without proper investigation.

Thanks to this forum and helpful comments re: places i can get tested (medichecks) i have found one near me! So if my doctors won’t take it further when i speak to them on Monday that’s what I’ll be doing.

Coop20 profile image
Coop20

Just an update for anyone that reads this in the future!

I just finally had the call with my doctor as they had my results down as elevated but no further action. My doctor has just said to me on the phone that my test results aren’t high enough to warrant anything further other than a retest in 6 months. She said i am sub clinically hypothyroid and it’s not high enough to be giving me any symptoms....so this just makes me feel like A. I’m either imagining everything or B. It just doesn’t matter what I’m feeling...because i know feel stupid. 👍🏻

tattybogle profile image
tattybogle in reply toCoop20

disappointing outcome, but i suppose, given that TSH is only a bit over range on this test, it's understandable. gp's are under a lot of pressure NOT to diagnose at subclinical levels.

Still , a re- test in 6 mths is (slightly) better than 'sod off.'

So i recommend you do follow through with that.

In the meantime keep a list of how your symptoms are affecting your life to show them next time.

If your next TSH shows a further increase on this one, you will have a stronger case, so make certain you get the EARLIEST POSSIBLE AM blood draw, before breakfast, only water until after test.

But even if it's understandable that they don't feel able to prescribe at this point, there is no reason for them to make you feel stupid .

If the Electrician cant find the intermittent fault on your car for a year, it doesn't mean the car is stupid.

Lots of us on here know exactly how you feel right now. The trick is not to take it personally.

Just look at yourself as a 10 minute appointment, that they can eliminate from their workload easily. It hurts less.

If you become too fed up of dealing with them to go back in 6 mths , that will suit them nicely.

Don't make life that easy for them.

Coop20 profile image
Coop20

Well just wanted to update for anyone else reading this in the future...i got my further private test results back from the fantastic Medichecks. I paid for a female hormone check which included the extra thyroid ones that i wanted.

My results showed that actually this time my thyroid results were fine, however other hormone ones were not, my LH and Oestradiol were extremely high and they have suggested a re test in four weeks.

I’m so thankful for your suggestions on here for medichecks.

Coop20 profile image
Coop20

Hi everyone, here are some blood test results i had more recently...

Proteins - SHBG 35.3 nmol/L (range: 32.4-128)

Hormones -

FSH - 5.75 IU/L (range: 3.5-12.5)

LH - 17.9 IU/L (range: 2.4-12.6)

Oestradiol - 1,082 pmol/L (range: 45.4-854)

Testosterone - 0.744 nmol/L (range: 0.2-7.1)

Prolactin - 263 m U/L (range: 102-496)

Thyroid -

TSH - 3.56 mIU/L (range: 0.27-4.2)

Free t3 - 4.63 pmol/L (range: 3.1-6.8)

Free thyroxine - 13.7 pmol/L (range: 12-22)

Autoimmunity-

Thyroglobulin - 10.5 kIU/L (range: 0-115)

Thyroid peroxidase antibodies - 10.2 kIU/L (range: 0-34)

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