Very new to this world...: Hello everyone... - Thyroid UK

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Very new to this world...

Twilks01 profile image
41 Replies

Hello everyone, apologies in advance for my naivety in all things Thyroid. I’m a 43 year old man and over the past 48 hours I’ve patched together a number of very long term symptoms - deep fatigue, muscle/joint pain, brain fog and weight gain being the most prevalent - with the revelation that my sister has been on meds for an under active thyroid for many years.

This morning I took a blood test and the results have just landed - and I’m a little confused (nothing new at the moment!) They seem to be within range of this particular lab and also many web search results and the GP who sent the results said I have ‘no problem’ - but other searches suggest I may have hypothyroidism and I should investigate further. The numbers in question are

THYROID STIMULATING HORMONE - 2.97

FREE THYROXINE - 14.9

Any advice on what those numbers really mean and what I should do next would be hugely appreciated. Many thanks, Mark

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Twilks01
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41 Replies
greygoose profile image
greygoose

Can you give us the range for the FT4, please? Ranges vary from lab to lab, so we always need to see those that were used for your tests.

Your TSH is high. It may be 'in-range', but it is not really normal. It suggests that your thyroid is struggling. So, yes, investigating further would be a good idea. You need full thyroid testing to get the full picture, and the NHS won't do that. You need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

You can get those done privately. Full details here:

thyroiduk.org/tuk/testing/p...

Then, if you post the results and ranges on here, we can help you understand them, and suggest a way forward. :)

Twilks01 profile image
Twilks01 in reply togreygoose

Amazing. Thank you so much. I’ll get those done pronto. The GP talked me out of the deeper thyroid test and into a broader MOT. Should have held my ground!

A couple of the tests you mention above were in there though

FERRITIN 505 (I’ve been taking iron supplements recently though to try and combat fatigue)

25 OH Vitamin D 79

Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply toTwilks01

Too much iron is toxic. Suggest you stop iron supplements. Ferritin level looks high (range 400 max?)

Does your sister have autoimmune thyroid disease also called Hashimoto's?

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 Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Twilks01 profile image
Twilks01 in reply toSlowDragon

So helpful. Thank you. Iron tabs in the bin!

Will find that out from my sister and order a test now

Twilks01 profile image
Twilks01 in reply toSlowDragon

Thank you. On it. One of the broad thyroid tests recommended on here ordered and on its way. Can trace my symptoms back to a very bad case of measals which hospitalised me - have often wondered if it’s linked, will hopefully find out in this process

greygoose profile image
greygoose in reply toTwilks01

Sounds like you've over-shot the mark with the ferritin! Be careful, you don't want it too high. Vit D could be higher, but depends on the range.

FT4 14 (12.0-22.0) So, pretty low. Should be up nearer mid-range for a healthy thyroid.

What time of day was the blood draw? Had you eaten/drunk coffee before having the blood draw?

Twilks01 profile image
Twilks01 in reply togreygoose

Thanks. Iron tablets in the bin!

It was at 12.30 this afternoon. Had eaten porridge and had two coffees 😬

Vit D range was 50-200 btw

greygoose profile image
greygoose in reply toTwilks01

Well, I wouldn't put them in the bin. You might need them again, one day. Depends how well you hold on to your iron.

OKAY! So, had you had your blood draw around 8 am, and fasted over-night, your TSH would have been higher. Impossible to say by how much, but could be quite substantiel.

Yes, your vit D could be a lot higher - around 100, maybe.

Twilks01 profile image
Twilks01 in reply togreygoose

Thanks. I’ll be sure to fast and go early when I do the next test. Presume they are pin prick home and post tests?

SlowDragon profile image
SlowDragonAdministrator in reply toTwilks01

You can pay extra for private blood draw at local-to-you clinic or even have a nurse visit your home

Important to do test as early as possible in morning and fasting to get highest TSH

TSH daily variation

healthunlocked.com/thyroidu...

Median TSH graph

healthunlocked.com/thyroidu...

Hashihouseman profile image
Hashihouseman in reply toSlowDragon

I do my finger prick TFTs at various times depending which aspect I am investigating but tests around midnight or just before bed tend to give the highest TSH .....

greygoose profile image
greygoose in reply toTwilks01

You can have a pin prick test, yes. Or they have nurses in certain areas that will take the blood for you. You chose. But, I can't give you much detail because I've never done it. Sorry. :)

Twilks01 profile image
Twilks01 in reply togreygoose

Thank you. On it. One of the broad thyroid tests recommended on here ordered and on its way. Can trace my symptoms back to a very bad case of measals which hospitalised me - have often wondered if it’s linked, will hopefully find out in this process

greygoose profile image
greygoose in reply toTwilks01

More likely that you'll never find out, I'm afraid. There's no way of telling why, how, when or where. :(

Twilks01 profile image
Twilks01 in reply togreygoose

Ah well, guess it’s more important just to get it sorted. Could really do with getting rid of the fatigue, fog and flippin aches

greygoose profile image
greygoose in reply toTwilks01

It is indeed. And, even if you could find out that it was the measles that caused it, there's nothing you can do about it now. :)

mountainice profile image
mountainice in reply togreygoose

Is it necessary to do Reverse T3 as I have had all the above tests except TgAb and there is no mention of Reverse T3. Thanks.

SlowDragon profile image
SlowDragonAdministrator in reply tomountainice

It can be good idea to test TG antibodies if TPO antibodies are negative

You can have just high TG antibodies and NHS won't test these if TPO are negative

healthline.com/health/antit...

Reverse T3 is very expensive test. Only worth doing in certain circumstances. If FT4 is very high, say and yet not getting better. Low ferritin may apparently cause high Reverse T3

mountainice profile image
mountainice in reply toSlowDragon

Thank you, I am trying to decide whether to do a Medichecks test, especially as they have a 20% off at the moment.

greygoose profile image
greygoose in reply tomountainice

Testing rT3 won't give you any information that you can't get from doing comprehensive thyroid testing - or perhaps I should say thyroid-related testing.

An rT3 test will only tell you if your rT3 is high, but it won't tell you why.

If your FT4 is high/over-range then your rT3 is going to be high. I think that's a given. But, it will either be high because you are over-medicated or because you have a conversion problem. In either case, you would do something about it, you don't need an rT3 test to tell you to do something about it.

High cortisol can cause it - if you have high cortisol, you will, I should imagine, do something to reduce it. Again, you don't need an rT3 test to tell you that.

So many things can cause high rT3, like low-calorie diets, long-term Beta Blocker use, infections, low ferritin, etc. etc. etc. In each case, you will probably know there's a problem and be doing something about it. You don't need an rT3 test.

People used to believe that rT3 blocked T3 receptors and that was a problem. Now we know that rT3 has it's own receptors. And, whilst we don't really know if rT3 does anything negative, there's no reason to believe it does. So, for general thyroid testing, such as you would do yourself, rT3 is not necessary at all. :)

mountainice profile image
mountainice in reply togreygoose

thank you, that has answered my question. I have just made a completely new post as I don't want to hijack this one.

greygoose profile image
greygoose in reply tomountainice

You're welcome. :)

Twilks01 profile image
Twilks01

Sorry, the TF4 range was 12.0 - 22.0

pmol/ - is that what you meant?

NWA6 profile image
NWA6 in reply toTwilks01

Yes that’s helpful. Your FT4 is low. If you get the other bloods done then it’ll really build the whole picture. Your TSH is in range but it may not be optimal for you. FT4 is low but that’s not the hormone that keeps your body ticking over. T4 coverts to T3 and it’s the T3 that does all the work so that’s why it’s important to know the number. With the current results your Dr is not likely to pursue thyroid replacement treatment. You will get quicker answers from private blood tests. I’m going to assume that your FT3 may also be in range. Getting tested for antibodies and that test being positive will give you more leverage with your GP but as they still use a high TSH result to determine treatment you’re still going to have to wait 2/4/6/8 a year to see if your TSH raises to above 10 before the GP will start treatment. Even if you go with a private Endo they may not start treatment with those results.

It really is a wait and see, get full thyroid tests. I’m not being dismissive, just realistic. And also to help you look at other causes, perhaps vitamins and minerals?

Twilks01 profile image
Twilks01 in reply toNWA6

Thank you that’s very useful

SlowDragon profile image
SlowDragonAdministrator in reply toTwilks01

Autoimmune thyroid disease is much more common in women.....medics think it much more unlikely in men

thyroidpharmacist.com/artic...

Hashihouseman profile image
Hashihouseman in reply toSlowDragon

Well I have it! It’s more a genetic heritability thing than a gender thing

Twilks01 profile image
Twilks01 in reply toHashihouseman

Will ask my sister if she has it - although not sure if it would need to be direct to make that link

silverfox7 profile image
silverfox7

Can't add to what you have already been told but just amwanted to add in awelcome and don't worry about lack of understanding, we have all been there so understand. One thing you should get into the habit of is always asking for a printout of anything your doctor tests as that's a good way of charting your progress and then you can add in anything else, symptoms that are new, things that have improved, diet tweaks etc to get the fuller picture of what an increase or decrease has meant for you. I never did but wished I had now!

Twilks01 profile image
Twilks01 in reply tosilverfox7

Thanks so much for the welcome and the advice. Very glad I found this place

Hashihouseman profile image
Hashihouseman

You absolutely need your free T3 tested. Your TSH could be in range as others have said but the normal healthy curve has the most common TSH at around 1.0, so whatever time of day you took that you could be running three times hotter than a healthy normal person. In any event TSH varies for many reasons and at different times over 24 hour period however that variation is not so confounding when it is looked at alongside free T3 and free T4 within a single thyroid function test. Quite frankly making any diagnosis without at least those three indicators is almost futile. The other point I would make is that if you have symptoms that are all nodding in the direction of hypothyroidism and your TSH is raised then your GP should definitely be making further investigations, unfortunately they resist doing this unless your TSH is between five and 10 and sometimes they don’t even do it then. You will probably have to investigate with private TFTs until you get enough information to tell your GP to pull their finger out and support you.

Twilks01 profile image
Twilks01 in reply toHashihouseman

Thank you. On it. One of the broad thyroid tests recommended on here ordered and on its way. Can trace my symptoms back to a very bad case of measals which hospitalised me - have often wondered if it’s linked, will hopefully find out in this process

Hashihouseman profile image
Hashihouseman in reply toTwilks01

A long hard virus seemed to start my Hashimotos but it also runs in my family

I'm a bit late to the party but agree with just about everything everyone has said!

Welcome to the forum, I came across it about a year ago and found it so very helpful. Hope you will too.

It does seem that hypothyroid symptoms are triggered or made worse by an infection. I had been feeling tired and various other vague symptoms for several years but was told things were OK except for low ferritin and folate. No mention of any thyroid problem at first. Then I had what seemed to be a virus infection of some sort. After the fluey feeling went away I still couldn't concentrate, and hardly function at all - brain fog is one of the most common symptoms. Eventually I was given thyroxine. Still a work in progress but hopefully getting there.

Twilks01 profile image
Twilks01 in reply to

Hi there, thanks for the welcome. The fog, oh the fog! When I first read the description of the symptom it was so spot on to what I’d been feeling that nearly wept! Have the thyroxine helped so far?

in reply toTwilks01

Yes, it's been a great help, but I still don't feel 100% because of being told to reduce it just as I seemed to be getting somewhere. My TSH was too low for official approval, and T3 and T4 were just under top of range. The next battle (hopefully to prevent a further reduction!) will be in June. I gave the reduction a try hoping to show that I DO need an increase, but whether they will listen...

Twilks01 profile image
Twilks01 in reply to

Fingers crossed for you. Are you seeing a GP or consultant?

in reply toTwilks01

Neither. The practice pharmacist (who is qualified to prescribe) is overseeing my medication, though the doctor first prescribed thyroxine. She is quite good, but still has the usual fixation on the idea that TSH has to be "Within range" and must be brought up if too low - even if it means you still have hypo symptoms.

SilverAvocado profile image
SilverAvocado

In terms of these results, 2.5 is my personal cut off for a TSH that suggest trouble. A person with a healthy thyroid will have one around 0.8-1.8, and the further outside that a person is, the more likely something is going wrong.

For freeT4 its a normal curve, with a healthy person right in the middle, so yours is pretty low.

Thyroid illness runs in families, so your sister having it too is also a bit of a clue.

However, you are in a very unfortunate position, because GPs have a much higher TSH cut off than I do :( They will often wait for your TSH to be outside the range, or even to reach 10 before they diagnose anything.

Don't be surprised if you get a strong cold shoulder even once you've collected more evidence - I don't think you'll find tons more to sway them, as those two results are pretty conclusive in themselves. You may benefit from a bit of sexism, but you might also be on the wrong side of it, as this is 'a woman's illness'.

I just wanted to warn to to keep the idea of buying your own and self medicating in the back of your mind while you research, as it can sometimes be the only option for someone in your situation if you can't find a doctor to support you :( It can take years if not decades for the thyroid to deteriorate enough to give them the TSH they want.

Twilks01 profile image
Twilks01 in reply toSilverAvocado

Thank you so much for that advice. Invaluable. In your experience does going direct to a consultant Endo help matters? Are they more likely to have a lower TSH range I wonder?

I take it buying and self medicating is an option then should it come to that?

Many thanks again.

SilverAvocado profile image
SilverAvocado in reply toTwilks01

Generally Endos are not much better than GPs. Its kind of the luck of the draw, because some (v rare) GPs can be great. You'd hope Endos would be a tiny bit better and have more power to give a nuanced response, but I'm not sure it's the case :( I think more than anything it's a numbers game. If you have a bunch of GPs you can visit at your practice, and then are able to switch practice and see a few more, or go private and see a couple, you may find one that's good.

Unfortunately with your TSH (the majority will look only at the TSH), its unlikely you'll get diagnosed. If it was over the top of the range, like 4, that one in 20 doctor would diagnose you, but I doubt many doctors know that healthy people have TSHs in the lower part of the range :( Things like loads of symptoms and finding positive antibodies (which prove you have Hashimoto's autoimmune thyroid illness, which is probably what you have) can help your case a bit. The one in 20 doctor might trial treatment with that (one in 20 is a made up number, I have no idea the true likelihood).

Yes, if you want to self medicate this forum is the right place to find out about sources. Many of us are forced to buy our own :(

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