Help understanding my thyroid test please! - Thyroid UK

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Help understanding my thyroid test please!

Nicolet89 profile image
32 Replies

I wrote this post yesterday: healthunlocked.com/thyroidu....

I have borderline hypothyroidism but with the blood test showing was it does (not that I understand it) and my symptoms making my days a struggle my Doctor decided to start me on a small dose of 25mg Levothyroxine with a blood test in 6 weeks to review the dose. Is that normal to start the treatment when it's only borderline?

I got a copy of my blood test results and cannot even begin to understand it. I know a lot of people on here can very easily explain what it all means, so please feel free to help out a newbie.

Thank you :-)

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Nicolet89
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32 Replies

No it's not normal but means you actually have a good doctor. Your thyroid is obviously beginning to struggle as tsh is elevated and t4 is pretty much at the lowest end of normal.

Nicolet89 profile image
Nicolet89 in reply to

So it's bound to get worse, it won't get better? How come my results don't show t3? I keep seeing people talking about t3.

in reply to Nicolet89

It will decline yes. If you see at the bottom I think it stated it will decline by around 5 percent yearly. Mine declined quite slowly. I dont think the nhs test t3 as standard anymore although they probably should, for all you know you could have little to non and thats what gives you energy. A lot of people find out via private testing but its worth asking your GP. Think it costs them a lot.

Nicolet89 profile image
Nicolet89 in reply to

Is 5% slow? What was your decline? So the t3 is for engergy? What does the t4 do?

Sorry, so many questions and learning lol.

in reply to Nicolet89

T4 usually converts to T3 naturally in the body. If you have a conversion problem then that can be a problem when they don't test the levels. I have no idea with mine as I have only been diagnosed via private testing. I was unlucky and got pretty useless GPs. I think most peoples decline over a number of years though. Mine was about 7 years in all.

Nicolet89 profile image
Nicolet89 in reply to

That's sad to her that you had to do private testing because you were unlucky with your GP. Thank you for all the information, you have been helpful on both of my posts, much appreciated.

in reply to Nicolet89

No problem, that's what the forum is for. We were all new to it all at one point with many questions 😊

SeasideSusie profile image
SeasideSusieRemembering in reply to Nicolet89

Nicolet89 It doesn't show FT3 because it's rarely tested. For some inexplicable reason doctors don't seem to put much importance on it yet it is the active hormone that every cell in our body needs.

So, you have positive antibodies which means you have autoimmune thyroid disease aka Hashimoto's. Don't expect your doctor to know too much about this and give you any guidance.

You need to educate yourself. You have this condition for life, you will more than likely struggle to be optimally medicated like most of us, so the bet thing you can do is read, research, learn, and help yourself.

Look around ThyroidUK's main website, there's lots of information there thyroiduk.org.uk/tuk/index.... Anything you don't understand then ask.

For Hashi's the best thing you can do is try to reduce the antibody attacks, this is where the antibodies attack and will eventually destroy your thyroid. There are a few ways to try to reduce the attacks.

1) Go completely, 100% gluten free. Many members find this helps enormously.

2) Some people need to be dairy free.

3) Supplement with Selenium.

4) Keep your TSH low as this also helps.

Here's some reading, learn all about it in order to help yourself:

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

You also need to learn that the aim of a treated hypo patient is for the TSH to be 1 or below or wherever needed for FT4 and FT3 to be in the upper part of their ranges. The following is useful for future reference in case your doctor does not allow your meds to be adjusted to achieve this:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:

"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)."

If you email louise.warvill@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP or Endo.

You also need to know that your vitamins and minerals all need to be at optimal levels for thyroid hormone to work properly. You've mentioned Vit D was said to be low. You need to always ask for a print out of all your results. You are legally entitled to them under the Data Protection Act 1998. Your surgery cannot refuse to supply them or they will be breaking the law. They may need the GP's permission before handing them over and they may make a small charge for printing.

So besides your Vit D you need

B12

Ferritin

Folate

to be tested. Make a new post when you have the results and members will advise of any deficiencies and suggest supplements and doses where necessary.

Nicolet89 profile image
Nicolet89 in reply to SeasideSusie

Thank you so much for talking the time to reply to my post. Very overwhelming but most definitely very helpful information. I will spend time reading all the useful links you have given and email Louise for the booklet. I've learnt so much already in just the past two days.

I will request a copy of my vitamin results, no idea why they didn't just print them with my thyroid results but at least I now know I'm entitle to the results.

My next blood test is in six weeks but the form does not mention anything about testing for vitamins, it's just for the thyroid, should I request another form?

Thank you so much again!

SeasideSusie profile image
SeasideSusieRemembering in reply to Nicolet89

Nicolet89 You are very welcome, we all have to learn and it is so frustrating to see posts similar to yours every day :(

I'm not sure how the system works at your surgery, at mine you ask the doctor if they will test for whatever, the answer is usually no :( . Whatever they agree to test they will tick a tiny little badly printed 'ticket' and you take it to reception and they book you in with a nurse and note the tests down. So I think you will have to ask someone to make sure you get the tests. It's not normal for them to do vit and min tests, they don't understand anything about them and why they need to be optimal for our thyroid hormone to work properly. It's all so depressingly sad :(

But like I said, read and learn, you may need to fight your corner one day so be prepared :)

Good luck with everything, come back with results and reference ranges and members will help.

Nicolet89 profile image
Nicolet89 in reply to SeasideSusie

I'm so sorry, I do read other posts first before I make a new one but I just wanted specific answers relating to my blood test.

I'm prepared to fight my corner haha! To be fair I had to fight for this blood test. The Doctor just thought I was depressed and wanted to send me for counselling for the depression and couples therapy for the low libido... I made it quite clear that I had been depressed before (it felt different this time) and that my relationship was perfectly fine lol so do a blood test then we can talk after if it's clear... but it was not. Everyone knows their own body I guess.

Thank you, I will post when I get them. Thanks so much again :)

SeasideSusie profile image
SeasideSusieRemembering in reply to Nicolet89

"I'm so sorry, I do read other posts first before I make a new one but I just wanted specific answers relating to my blood test."

???? What have I said that makes you apologise??? I'm worried I've somehow upset you??? I wasn't referring to you reading other posts on here in particular.

By read and learn I just meant arm yourself with knowledge because one day you might need it, most of us long term hypos have had to fight our corners or give up with our GPs when our heads have become so sore from banging them against a brick wall.

Some members have been successful in educating their GPs - I think we need a fainting smiley LOL!!

:)

Nicolet89 profile image
Nicolet89 in reply to SeasideSusie

haha I'm not upset at all, really appreciate all your help! Sorry I might have miss understood when you said: "You are very welcome, we all have to learn and it is so frustrating to see posts similar to yours every day :(" Thought you meant it's frustrating to read the same questions everyday and having to reply with the same answers lol.

Well just in two days I feel a lot more educated (Overwhelmed) but know more than what I got from the doctor lol.

:)

SeasideSusie profile image
SeasideSusieRemembering in reply to Nicolet89

Oh crikey No! Perhaps I phrased that wrongly.

What frustrates me is so many idiot doctors know so little and so many people come here with obvious symptoms of hypo but can't get anywhere with their doctors and they're left to suffer :(

There are days when my posts are very anti-doctor. My own are bad enough but it's obvious that they're a growing breed and getting everywhere. I don't think there's much caring in doctoring any more. l'm old enough to know when doctors actually knew their patients, their families and did actually care about them. Those sort of doctors are dying out now and it makes me so sad to read some of the posts on here :(

I'm sure you must feel overwhelmed, such a lot to try to understand. You'll get there :)

Nicolet89 profile image
Nicolet89 in reply to SeasideSusie

That makes sense. It's really unfair, I must have got lucky for the diagnosis although we will see what she's like for support moving forward. Although she dismissed my vitamin D so it's not looking good ha.

I'm glad I joined on here, I thought it was just a case of taking a tablet but there's a lot more to it than just that, so much to consider.

Thank you again for your help 😊

puncturedbicycle profile image
puncturedbicycle

This is what Hashimoto's looks like before it gets worse. You have a slightly raised tsh, your t4 is low in range and your antibodies are raised, which indicates there is autoimmune activity which will eventually make you ill. It isn't necessarily normal to treat now, but the alternative is to wait until you feel really dreadful. I think it could indicate that your gp is compassionate and well-informed.

Having said that, you may feel worse on 25mcg if it reduces the output from your thyroid. Are there plans to retest in 6-8wks?

Nicolet89 profile image
Nicolet89 in reply to puncturedbicycle

What is hashimotos? That does not sound good, didn't think my symptoms could get worse. I'm always tired (no idea how I will get through the day without my naps when I go back to work.. I'm a teacher so the summer holidays has been a nice break), gained weight (although probably more a healthy weight now as I was always underweight), feeling depressed, loss of lobido, hair loss, dry skin, etc. What does dreadful look like?

Yeah I go for another test in 6 weeks once the tablets kick in. Is 25 to high do you think?

puncturedbicycle profile image
puncturedbicycle in reply to Nicolet89

Ah, well it sounds like you already feel properly dreadful. Your symptoms are very typical. I guess I meant that some gps insist on waiting until your tsh is much higher (over 10) and t3/t4 are below range. So that fact that you're being given treatment indicates that your gp is being proactive and responding to how ill you feel.

I don't think 25 is too high. If anything it is too low, but presumably they're exercising caution w your results being borderline. Most people start on 50 and usually need a tweak or two (or three etc) before everything stabilises. It takes 6-8wks for your levels to reach a stable point so you should be retested to see what's going on and hopefully adjustments will be made until you feel better.

Hashimoto's is just autoimmune thyroiditis, where for whatever reason your body treats your thyroid like a foreign invader and your immune system attacks it. It is the most common cause of underactive thyroid (aka hypothyroidism).

Nicolet89 profile image
Nicolet89 in reply to puncturedbicycle

Thank you, great information! Good to know I have a doctor looking out for me, it's not often that's found.

On my results, it's got numbers in brackets, what does that mean?

Will post my next results in 6 weeks haha!

SeasideSusie profile image
SeasideSusieRemembering in reply to Nicolet89

The numbers in brackets are the reference ranges. Very, very important for working out where you are in the range, for comparing new results with old, for seeing if your thyroid meds are getting you to the optimal levels. Always get the reference ranges and quote them as they differ from lab to lab and members can't comment accurately without them.

Nicolet89 profile image
Nicolet89 in reply to SeasideSusie

I guess I will have to learn a lot more to even understand what you mean but being on this site gives me great confidence that with everyone's help I will learn and be guided. Thank you :)

puncturedbicycle profile image
puncturedbicycle in reply to Nicolet89

Those are the ranges, so there will be a low limit and a high limit, between which any results are considered to be normal. If your tsh was below the lowest number in the range and your t3/t4 were above the highest number in their ranges you'd be considered to be hypERactive (Graves disease).

The reason we all are applauding your gp is because many people feel very ill but have trouble convincing their gp that anything is wrong, esp w a tsh within range. There is a small chance your results can be skewed by a virus or inflammation and will return to normal later, so in order to get diagnosed some people wait many years to present w a tsh higher than 10. For whatever reason they like it to be well over range before they put you on meds, I guess so there aren't a lot of folk on meds who otherwise would have returned to normal. In a sense there are two ranges, the one for people on meds and the one for people to be diagnosed. They set the bar high for diagnosis, but once diagnosed your tsh should be kept in the lower end of the normal range.

Not sure if that all makes sense or not. :-) I'm sure I've made it more complicated than it really is. If you do a bit of reading here it will begin to come together.

Nicolet89 profile image
Nicolet89 in reply to puncturedbicycle

That's sad to know that people go through so much trouble to find out and get the results from their GPs - It must be very frustrating. Do you think it's possible that I have been miss diagnosed? That it could be a virus? Guess we will see when I have my next blood test :/

It does make sense (mostly lol) still learning so I'm sure I will get use to all the terms and how to work out my bloods etc.

Can I just ask, is Hashimoto's different from hyperthyroidism? or is it the same thing?

Thank you for all your help, it's been very useful!!!

SlowDragon profile image
SlowDragonAdministrator in reply to Nicolet89

Hashimoto's is the most common cause of hypothyroudism (under active)

Medics treat the result - low thyroid. Not the cause - to read more about causes see websites:

Thyroid Uk.org

Thyroid pharmacist

amazon.co.uk/Immune-System-...

helvella profile image
helvellaAdministratorThyroid UK in reply to SlowDragon

That may be true in the UK and the USA. But, worldwide, iodine deficiency is the leading cause.

Nicolet89 profile image
Nicolet89 in reply to helvella

Wonder if the doctor tested that - that's interesting! Thanks :)

Nicolet89 profile image
Nicolet89 in reply to SlowDragon

That makes sense, I will add the link to my reading list - thank you so much :)

Nicolet89 profile image
Nicolet89

They didn't print off my Vitamin D so I don't know exactly what it is but my doctor did mention it was low although didn't really focus on that or tell me to do anything lol.

SlowDragon profile image
SlowDragonAdministrator

Find out your vitamin d test result. Then make a new post on here, for members to advise if you need to supplement and by how much.

Low vitamin d is extremely common with Hashimoto's

We make vitamin d from sunshine, so make the most of the rest of the summer sun and boost your levels as much as possible. 15-20 mins of arms /legs exposed, near middle of the day, without suntan lotion is enough. Don't need to tan and definitely don't burn. 😎

vitamindcouncil.org/tag/aut...

Nicolet89 profile image
Nicolet89 in reply to SlowDragon

Thank you! I will definitely post my results once I have requested a copy. I did think it was strange that my Vitamin D was low during the summer when I have been out in the sun most days lol.

Nicolet89 profile image
Nicolet89

Thank you, I thought it was strange that she just dismissed the Vitamin D result. I will request the results and post when I finally get them :)

Nicolet89 profile image
Nicolet89

Thank you! Interesting read. Hopefully it all gets sorted soon-ish.. guess it's a waiting game at the moment.

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