This is why you should ALWAYS view your own blood results.

[PurpleNails]

I was diagnosed Nov 2018, despite a blood test 7 months before not being processed and me being incorrectly informed all normal.

But now I’ve discovered I was hyper years before getting diagnosed.

Since setting up online access (with help from this forum on how to start going about it) I been going through my record and I was reminded I had hospital appointment to investigate mild eye proptosis. The consultant letter back to the GP confirmed I had my thyroid & antibodies tested. Back then I just accepted it when I was told “it says no further action”

I was able to obtain a copy via email - filling in form, including a witness and provide ID, quite a few hoops.....

These are the results:

July 2014

TSH 0.01 (0.35-3.50)

FT3 6.4 (3.8 - 6)

TRAb 0.50 (<1.00)

Anti TPO ab 17.4 (<34)

FT4 17 (8-21)

So I was a little hyper even back then, definitely should have had follow up. There appears to be no record of it being passed to GP to investigate.

It’s irrelevant now but my antibodies were negative.

What does it mean to be mildly hyper for 4 & half years?

[greygoose]

July 2014

TSH 0.01 (0.35-3.50)

FT3 6.4 (3.8 - 6)

TRAb 0.50 (<1.00)

Anti TPO ab 17.4 (<34)

FT4 17 (8-21)

So I was a little hyper even back then,

Hardly hyper with those results. Your FT3 is only just over-range, and your FT4 about mid-range. Your antibodies are negative for both Graves and Hashi's. Just having a suppressed TSH doesn't make you any sort of hyper.

[PurpleNails Administrator in reply to greygoose]

Thank you for taking the time to reply.

These are old results. 4 and a half years before I was diagnosed. Looking specifically at thyroid and antibodies, but I heard nothing.

I never reached what is considered true Graves hyper high levels but I do think It should have had investigated back then.

[greygoose in reply to PurpleNails]

I never reached what is considered true Graves hyper high levels

That's probably because you don't have Graves.

[PurpleNails Administrator]

I wasn’t told of these results, it’s was 4.5 years later I was diagnosed.

[PurpleNails Administrator]

Mine has been suppressed for over 7 years. Its rose very slightly earlier this year, but started dipping again. It has not been back in range with carbimazole treatment.

[tattybogle]

I think the comment "no further action " was ok at the time, but given that you'd been seen due to mild eye symptom, and the TSH/ft3 are showing a tendancy towards "?mildly overactive", it should have presumably been in the sense of "no further action at the moment , but keep an eye on it in future"Did they keep a check on your result after then , or did they just forget about it ?

But they wouldn't have done anything about those results at the time other than "watch and wait"

And they did check the relevant antibodies, and they were OK

[PurpleNails Administrator in reply to tattybogle]

No, nothing was done at the time, I wasn’t informed. I had a further set of blood test 4 years later, and was also told NFA. The thyroid test wasn’t processed, and receptionist was referring to another set of blood results. Later that year I was tested again & told I had hyperthyroid results.

I get what others say about it being only slightly elevated & TSH meaningless, but I do wonder if being mildly hyperthyroid for years can affect you long term.

[tattybogle in reply to PurpleNails]

Possibly it would... i'm sure it's not great for your heart etc. long term , even if only mildly overactive. And it's probably not great for you head either, if you feel anxious and irritable etc.But the question is , what would they be able to do treatment wise ?......... antithyroid drugs have big risks of their own, and without over range TRab they would presumably be highly inappropriate.

With 'sub clinical' Hypo they have the option of giving Levo, but with 'sub clinical' Hyper i'm not sure what the options for treatment are, other than stuff to help calm symptoms if there are any.

[PurpleNails Administrator in reply to tattybogle]

I didn’t have any remarkable symptoms that I was aware of at the time. I thought I was hypothyroid as I was so overweight. My theory is, that being mildly hyper caused an out of control appetite but with zero energy which developed so slowly I didn’t realise.

I hadn’t noticed but the GP said my heart rate was elevated and I was given propranolol. The specialist stoped it 2 months later but I triggered migraines and GP started it again. I still take a tiny dose, it taken months to wean down.

I was also prescribed carbimazole and take currently take 10 / 5 mg alternate days. Been taking it for 2 years.

[tattybogle in reply to PurpleNails]

Sounds like you and i are victims of the same problem ie. being the wrong size to fit the tick box hypo/hyper diagnosis.

I've never been over weight , usually a bit under in fact. So it took a smart doctor to check my thyroid for hypothyroidism. He got TPOab 2499[0-50] and then checked again to be sure and got >3000.

He must have been well educated on thyroid, because he checked my ankle reflexes first too.

Not bad for the NHS.... i didn't rate him at the time , but now i realise how good he was compared to many i come across on here.

[Fruitandnutcase in reply to tattybogle]

Many years before I was found to have Graves my GP and I thought I was hypo - then when the results came back she said she was surprised to find that I was ‘borderline hyper’. That was back when I was young and innocent and didn’t realise that I ought to get a copies of all my test results let alone question everything!

Fast forward to 2012 and my GP tested my ankle reflexes like yours did tattyb . She also asked me to hold my hands up and out in front of me and we both watched them shake like mad. So that and the fact the receptionist who I knew from the school run brought in the doctor’s coffee during my consultation and said ‘Gosh, you've lost a lot of weight!’

My TSH was < lower than the lab base line, my T4 was way above top of the range. The lab in their wisdom didn’t test T3! and my antibodies were all very high.

From my experience - but I’m no expert - I think you can probably be hyper / Graves for years before your body just can’t cope any more. I always had lots of random ‘niggly’ symptoms that were never resolved.

I was amazed when the doctor I saw took me seriously then when I found out two days later that I actually had something wrong and something serious at that, I know it sounds weird but after years of feeling like a hypochondriac I was actually pleased.

[tattybogle in reply to Fruitandnutcase]

gosh , well that's three doctors on the NHS who know what physical signs to look for in thyroid cases. Because i also came across one a couple of years ago who did the 'hold your hands out' test.

Maybe there is hope for some of them after all, mind you the hand test lady was about 60 , and only doing part time.

But the ankle reflex /TPOab guy was only about 40 .... in 2003 .. oh damn, that makes him nearly 60 now too... oh well.

I read somewhere that all the chapters that describe these physical signs have gradually been removed from the thyroid textbook over the years, not that they probably use books to learn from nowadays... probably got a multichoice 'app' that say's

TSH / low? =hyper/panic & reduce Levo.

TSH/high = next patient please.

p.s

I think i was weirdly pleased too, better to have an explanation than think you're just useless, but i do remember going home and sitting in the kitchen for a long while while i got my head round the finality of " your immune system is killing your thyroid , it will keep killing it more as time goes on"

And thinking " Is that it ? .... don't i even get a leaflet ....?

[PurpleNails Administrator in reply to tattybogle]

The type of things written in a leaflet probably would help much... do we need to know the shape of the thyroid and how easily doctors believe it can be treated?

Although no doctor ever looked at my ankles.

Not since 2009 when I has pre eclampsia at the end of my pregnancy. I have extremely slender ankles and feet considering my frame so they were balloons to me but I was told oh they look fine.

[Fruitandnutcase in reply to tattybogle]

I read somewhere that all the chapters that describe these physical signs have gradually been removed from the thyroid textbook over the years, not that they probably use books to learn from nowadays... probably got a multichoice 'app' that say'sTSH / low? =hyper/panic & reduce Levo.

TSH/high = next patient please.

That wouldn’t surprise me in the least. Fits with my ‘three ages of women’ theory

1. Too young to have anything serious, 2. Menopausal 3. Too old to bother about.

Oh for the good old days when your doctor knew you well. Would shake your hand when you came into their surgery and ask how you were feeling, then prescribe/ adjust your medicines accordingly. Although how much can you do in ten minutes never mind via a phone call?

[MariLiz in reply to Fruitandnutcase]

I love your three ages of women theory! That sounds so true 👍

[jrbarnes in reply to Fruitandnutcase]

That gave me a good laugh that I needed.

[PurpleNails Administrator in reply to Fruitandnutcase]

I think a lot of us have stories about previous results being missed / ignored. I read on your profile you have now been diagnosed as having osteoporosis, do you think being left hyper contributed to that?

[Fruitandnutcase in reply to PurpleNails]

I don’t know about being left but I know being hyper is a contributing factor so it could well be. I was found to have inflammatory arthritis a couple of years later and I doubt if the three month course of steroids would have helped with that. Plus I’ve got a family history of osteoporosis.

I really do wish that doctors would consider other conditions you may have or be susceptible to before they prescribe - I’m thinking PPIs to name but one drug - or at least warn you and let you decide the risks for yourself..

[humanbean]

tattybogle

I read somewhere that all the chapters that describe these physical signs have gradually been removed from the thyroid textbook over the years, not that they probably use books to learn from nowadays... probably got a multichoice 'app' that say's

TSH / low? =hyper/panic & reduce Levo.

TSH/high = next patient please.

You might find this link of interest - make sure you scroll through all the pages - there are only seven including the title page :

sick2death.com/thyroid-dise...

[tattybogle in reply to humanbean]

Ooh , that's Brilliant ... thanks .x

[tattybogle in reply to humanbean]

I've read it now..... currently remembering how my first baby needed a hernia operation ,and had to go under a lamp for a few days for jaundice, and had a low APGAR score initially at birth, so they wouldn't pass him over to me for what seemed like forever, and was always happily asleep, and was constipated until he grew up and discovered coffee, and liked to sit in the sum to warm up like a lizard, before he went to play....... Oh.

He's 29 now ,very clever, and he seems perfectly OK, .... is it too late to be a good mummy and wonder if my baby's problems were due to hypothyroidism.....

I did have that baby in Hospital so i'm sure they did the heel prick test , but still it makes you wonder

[PurpleNails Administrator in reply to tattybogle]

I have 2 children. Both have severe heart defects & moderate learning difficulties. I do wonder if thyroid was the cause.