Blimey!: So I've been told Hyper...and/or Hypo... - Thyroid UK

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Blimey!

Coulby profile image
Coulby
β€’46 Replies

So I've been told Hyper...and/or Hypo...Graves...Can someone tell me the difference between these..Have my Eno appt on 18th ???? This was an extra that I found out today.

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Coulby profile image
Coulby
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greygoose profile image
greygoose

The difference between hypo and hyper?

Hyper is when your thyroid makes too much thyroid hormone.

Hypo is when your thyroid cannot make enough thyroid hormone.

And if your doctor doesn't know the difference it's time to find a new doctor!

The main reason for hyperthyroidism is Graves' Disease. Graves' is caused by antibodies - TRAB and/or TSI which over-stimulate the thyroid. And it's very complicated and I don't pretend to understand the half of it but your TSH would be suppressed and your FT3 and FT4 would be very, very high.

There are lots of possible causes of hypothyroidism, but the most commong is Hashi's - aka Autoimmune Thyroiditis.

Hashi's is an autoimmune disease where the immune system attacks the thyroid, mistaking it for the enemy, and slowly destroys it, so you find yourself entirely dependent on exogenous hormone - levo, T3, etc.

But to complicate matters, with Hashi's you can have fake 'hyper' swings. And this often completely throws doctors because they don't understand how Hashi's works. So, without even testing anybodies - which would be the intelligent thing to do - they panic and put you on antithyroid drugs, which is the wrong treatement for Hashi's because the high levels will come down by themselves. And another clue that they miss completely: the levels of the Frees are usually a lot lower with a Hashi's 'hyper' swing than they would be with Graves'.

So, if your doctors don't know if you're hypo or hyper, just post your results and ranges on here and we'll tell them. Also, insist on them testing your antibodies before accepting any treatment. :)

Coulby profile image
Coulbyβ€’ in reply togreygoose

So the result that I put up as photo...are they good or not good.??Re low T4 ?

greygoose profile image
greygooseβ€’ in reply toCoulby

Sorry, but there is no photo.

Coulby profile image
Coulbyβ€’ in reply togreygoose

I've just put up another 3 ?

helvella profile image
helvellaAdministratorβ€’ in reply toCoulby

One worked - has three results in it. FT4, FT3 and TSH.

If you are having problems with photos, you can always type the details in! :-)

helvella profile image
helvellaAdministratorβ€’ in reply togreygoose

Might have had a problem - it has appeared lower down:

healthunlocked.com/thyroidu...

greygoose profile image
greygooseβ€’ in reply tohelvella

Yes, got it now. :)

greygoose profile image
greygooseβ€’ in reply togreygoose

OK, found the photo - it wasn't there when I first looked.

So, no, your FT4 is very bad. It is BELOW range! That is not just hypo, it's very hypo.

Your FT3 is better:

FT3: 4.3 pmol/l (Range 2.5 - 6) 51.43%

But, as a general rule, an FT3 that much higher than the FT4 is the sign of a failing thyroid.

Problem is, doctors only tend to look at the TSH (they don't know much about thyroid), and your TSH is pretty much e+uthyroid (i.e. not thyroid problems). If they knew anything about thyroid they would see that that is the problem: with such a low FT4, the TSH should be much higher. So, that is suggesting that the problem lies with your pituitary or your hypothalamus, rather than your thyroid, what we call Central Hypo.

The medical profession believes that Central Hypo is so rare that they don't bother to teach about it in med school. But, if they spent a couple of months on this forum, they would see that it's not as rare as all that! But, the result is that doctors are incapable of recognising it when they see it. But it goes like this:

Primary Hypo - thyroid at fault - high TSH + low FT3/4

Secondary Hypo - pituitary at fault - low in-range TSH + low FT3/4

Tertiary Hypo - hypothalamus at fault - low in-range TSH + low FT3/4

And if we don't know if the problem comes from the pituitary or the hypothalamus, we call it Central Hypo

I cannot imagine why any doctor would suspect Graves' with those results!!!

Coulby profile image
Coulbyβ€’ in reply togreygoose

Oh blimmen ek...So IL wait till the 28th and get back to you...Do you know what they would do re my multi nodular goitre???

greygoose profile image
greygooseβ€’ in reply toCoulby

You have a multi-nodular goitre, as well? In that case you definitely need your antibodies tested!

What they would do? Well, there's not a lot they can do apart from remove the thyroid entirely - which they would do if it affected your swallowing or breathing. Depends what's causing it. Could be that if they start you on thyroid hormone replacement it will go down - although that probably wouldn't affect the nodules, but they are rarely anything to worry about. :)

Coulby profile image
Coulbyβ€’ in reply togreygoose

I choke on water? So hoping I get answers on 18th πŸ˜–

greygoose profile image
greygooseβ€’ in reply toCoulby

I choke on my own saliva! It's a hypo thing. :)

Coulby profile image
Coulbyβ€’ in reply togreygoose

Oh really...me too πŸ€”

helvella profile image
helvellaAdministrator

Do you by any chance have low TSH AND low Free T4?

I urge you to contact your health people and get your actual test results. And, very importantly, the reference intervals (ranges). These ranges vary within a country - let alone half way round the world!

Post them and we might be able to help you further.

Coulby profile image
Coulbyβ€’ in reply tohelvella

Here are photos of results ..HOPEFULLY..see dates

Results
helvella profile image
helvellaAdministratorβ€’ in reply toCoulby

That appears to be an open-and-shut case of hypothyroidism!

Though a TSH that low is surprising given your Free T4 is definitely below the reference interval.

It suggests some other factor means your TSH is not rising as much as may of us would have expected.

Could be impaired pituitary function.

I wonder if at some point you had a low (below reference interval) TSH - which tends to be used to define hyperthyroidism - while your Free T4 was within the reference interval? That too could point at impaired pituitary function. So I am sort-of putting the two thoughts together.

That could explain some medical person wittering on about hyperthyroidism despite you (now, at least) being hypothyroid.

Far too much guesswork but there is something that needs further investigation.

Coulby profile image
Coulbyβ€’ in reply tohelvella

Thankyou heaps...That makes more sense than I've been told...yaa 18th..May have answers...As I said in another post, I was diagnosed in 2013 but wasn't told...My med notes say this and it also says "wasn't followed through" πŸ™„

pennyannie profile image
pennyannieβ€’ in reply toCoulby

A TSH of 1.50 is pretty much considered ' normal ' :

and likely too ' high ' a TSH for Graves Disease :

Your T4 is under the range and your T3 holding on at around 51% through the range -

but there is not enough T4 freely circulating in your body and this is the challenge your body is facing and why you feel as you do :

We need to know which antibodies have been found positive and over range in your bloods -

generally written as a TPO - TgAB - TRab - TSI - and / or a TSH Thyroid Receptor reading /range or single number with a cut off value:

and generally run from the very first blood test before any medication is prescribed :

Coulby profile image
Coulbyβ€’ in reply topennyannie

Thanks heaps..lots of questions for the specialist on the 18th !

pennyannie profile image
pennyannieβ€’ in reply toCoulby

Is it the 18th or 28th ?? and just read you have a goitre - so that likely what is causing this issue - does it press on your wind pipe and you have trouble swallowing ?

Coulby profile image
Coulbyβ€’ in reply topennyannie

18th..sorry, parkinsons doesnt help..Yes I keep choking with little bits of food or water etc...then my nose bleeds as I have had many procedures in my nose...pain in the butt

pennyannie profile image
pennyannieβ€’ in reply toCoulby

Ok then - let's not jump the gun and wait a few more days and see / hear what's said :

Coulby profile image
Coulbyβ€’ in reply topennyannie

Great idea...give it a couple of days after the 18th and il post the letter they send to my doctor x

pennyannie profile image
pennyannieβ€’ in reply toCoulby

You've stopped the Carbimazole haven't you ?

Coulby profile image
Coulbyβ€’ in reply topennyannie

No...the doc has kept me on it ?

helvella profile image
helvellaAdministratorβ€’ in reply toCoulby

WHAT???

I had not realised you are still taking Carbimazole.

Coulby profile image
Coulbyβ€’ in reply tohelvella

Yes I am ?? ????

pennyannie profile image
pennyannieβ€’ in reply toCoulby

NO - oh - crickey - I believe this will be compounding the issue -

Carbimazole is an Anti Thyroid drug and blocks your own new, daily, thyroid hormone production -

These blood tests showing your T4 below the range - was this before going on the Carbimazole or whilst on the Carbimazole ?

Coulby profile image
Coulbyβ€’ in reply topennyannie

While on it ??

pennyannie profile image
pennyannieβ€’ in reply toCoulby

OK - so I think wait until nearly tomorrow your time - and see what is suggested -

My immediate thought is to say - stop the AT drug -

BUT we do not know your initial blood test results before going on it - do we ??

How long have you been on the Carbimazole and have you had regular follow up appointments and the dose of this AT drug reduced - what is your dose now ?

If you get bloods taken on the 18th ask for them to also run your ferritin, folate, B12 and vitamin D as it is essential these core strength vitamins and minerals are kept at optimal levels for optimal health -

and as your metabolism has been slowed down by this drug you risk these building blocks having nose dived through the ranges compounding your ill health further than necessary.

Coulby profile image
Coulbyβ€’ in reply topennyannie

Oh blimey..one of the photos I put up were my pre Carbimazole levels..

pennyannie profile image
pennyannieβ€’ in reply toCoulby

Hey there - stop worrying - it's too late to make sense of this now -

I think you should just stay put now until the appointment - it's a day away :

The information we have is not date ordered or in a logical sequence of events:

Don't worry - just turn off and get some sleep :

Coulby profile image
Coulbyβ€’ in reply topennyannie

Ps. They wont be doing bloods as they asked that I have the one I just shared ..It had to be 1 wk before the appointment

pennyannie profile image
pennyannieβ€’ in reply toCoulby

OK so this blood test we are all looking at -

with a TSH of 1.50 with a T4 under range and a T3 at 4.30 the latest blood draw when on the AT drug :

Coulby profile image
Coulbyβ€’ in reply topennyannie

Yes

Buddy195 profile image
Buddy195Administrator

I would 100% ensure correct antibodies have been tested to confirm Graves. I say that because I was misdiagnosed as Graves (largely on hyper like symptoms plus Thyroid Eye Disease, which is more prevalent with Graves) BUT I actually found I was hypothyroid with Hashimotos (plus TED).

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

Β TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

pennyannie profile image
pennyannie

Hello Coulby ;

Can you please share your blood test results and ranges and we can then help you better -

otherwise everything is a guess !!

Coulby profile image
Coulbyβ€’ in reply topennyannie

I seethe Endocrinologist for the first time on Thursday morning NZ time..Will respond then xx

Coulby profile image
Coulbyβ€’ in reply toCoulby

Okay...Been to Thryoid specialist.I have THYROTOICOSIS and I'm on a 6mnth waiting list for Radioactive treatment ... and that's about all I know .

There will be a letter coming soon explaining it all and the specialists comments.

Wasn't very informative at all really but I did see the scan of the multi nodular goitre and the noduals looked really big 😳

pennyannie profile image
pennyannieβ€’ in reply toCoulby

Hey there -

Can I suggest you start a ' new post ' with this last message above -

which starts off with - Okay Been to Thyroid specialist - as it needs all forum members to see it -

Updates with new information - deserve a new post :

We can look back at this first post to remind ourselves of what's already happened :

pennyannie profile image
pennyannieβ€’ in reply topennyannie

Ok - so I can't see a new post and suspect you have gone to bed - no worries.

Was your dose of the AT drug - Carbimazole titrated down / adjusted ?

Were you given any other treatment options ?

I was told by a New Zealander that Radio Active Iodine was not considered ' a safe treatment option ' in your country - which I was pleased to read !!

Coulby profile image
Coulbyβ€’ in reply topennyannie

No I wasn't given options, I was told that before I have the radiation I would need to come completely off the carbimazole...Sorry no new post yet..I have Lewy Body as well and I'm exhausted ATM.. Thanks for your care

pennyannie profile image
pennyannieβ€’ in reply toCoulby

No worries get some sleep - we can pick this up another time :

Coulby profile image
Coulby

Am I allowed to swear on Here...I'm over this...sheesh

HealthStarDust profile image
HealthStarDust

I think you can transition from one to the other (how that works is beyond me) but you can not be both at the same time.

Coulby profile image
Coulbyβ€’ in reply toHealthStarDust

Endocrinologist appt at 10.15am in the morning...IL let you all know the results 🀞It's after 10pm here in NZ so im off to bed...Update soon 😴

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