More confused than ever?: Hi All - need some more... - Thyroid UK

Thyroid UK

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More confused than ever?

Mrsbuns profile image

Hi All - need some more advice/info if anyone can help. With all the ongoing issues with tbyroid/fibromyalgia my GP ordered a thyroid scan - well I had it this morning and the doctor said I don't have any thyroid? He insisted I must have had a complete thyrodectomy in 95 but I made him check my records and it says partial. So when I asked what has happened to the rest he said - no idea. Helpful 😆 and if I have high thyroid antibodies - recent medicheck results confirmed hashimotos - what is going on?

On a brighter note I have started the gluten free, dairy free diet and while it's too early to say if it is making a difference with the fibromyalgia I have lost 4 pounds! Bonus.

15 Replies

As far as I can read up about and understand TPOab doesn’t cause any illness as Greygoose said they just clean up after. So their presence is not harmful. I think TPO enzyme is not just in the thyroid but can’t find the link I was reading. Can the presence of TPOab suggest another condtion? Can the body absorb the rest of the thyriod if it’s dead?

So glad you are getting on well with your be eating habits. It’s always good to re-evaluate our diet, I think we’re all guilty of becoming lax about what we eat. It can become tedious, day in and day out. Well done in the 4lbs 🤗

Mrsbuns profile image
Mrsbuns in reply to NWA6

Thanks Paula6 - I will do some more research. Because my inflammation is high with no apparent reason I'm concerned something is going on that has so far not shown up on the tests. But at least I know the gluten and dairy free is going in the right direction x

NWA6 profile image
NWA6 in reply to Mrsbuns

So you’ve had inflammation blood tests too? Like CRP, ESR and whatever else, can’t think of their acronyms of the top of my head.

And did you know your TPOab number before or not long after TT? Maybe they’re just hanging around? Maybe they don’t go away? I’m not very well versed in all of this, just thinking allowed really 😬

Mrsbuns profile image
Mrsbuns in reply to NWA6

Yes had the CPR done several times and it keeps rising? Definitely more research needed 😆

SlowDragon profile image
SlowDragonAdministrator

You may need the addition of small dose of T3

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

thyroiduk.org.uk/tuk/About_...

Mrsbuns profile image
Mrsbuns in reply to SlowDragon

Thanks slowDragon - the last tests showed I was converting well - so would that still be something I need?

SlowDragon profile image
SlowDragonAdministrator in reply to Mrsbuns

If you still don't feel well, even though results look good, you may benefit from addition of T3

Perhaps look at DIO2 gene test

thyroiduk.org.uk/tuk/treatm...

This is a common gene variation. Many of us who test positive for this find the addition of small dose of T3 gives very impressive improvements

Mrsbuns profile image
Mrsbuns in reply to SlowDragon

Thank you - will get the list of endocrinologist and pursue this 😆

SlowDragon profile image
SlowDragonAdministrator in reply to Mrsbuns

A normal fully functioning thyroid produces 20% of total output as T3

Many patients need small dose of T3 as split dose 2-3 times per day in addition to Levothyroxine

Obviously the current cost issues means many endocrinologists are discouraged by a CCG from prescribing

One Kent endocrine centre is offering DIO2 gene test on NHS and will guarantee to prescribe T3 if test positive

Guidelines say if diagnosed as having clinical need of T3 by NHS endocrinologist then patients should be prescribed

But initially it may be easier to get prescribed via private prescription. This enables access to cheap T3 from Germany

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

Debates in parliament

theyworkforyou.com/search/?...

Well, if you had Hashis (autoimmune thyroid disease) before the PT, you will still have had it afterwards and so the rest of your thyroid will have been gradually destroyed. You need to make sure that you are optimally medicated and have optimal vitamin levels

Hi AngeL I had Graves in my 20s over 30 years ago now 😄 and I have been on thyroxine since then. It's only the last couple of years things seem to have gone wonky!

Are you sure you had Graves? Sometimes doctors confuse the hyper phase of Hashis with Graves as they don't always test for TRab. You can have both Graves and Hashis. Or perhaps they did a TT by accident (I've heard of surgeon doing entirely the wrong operation) and didn't 'fess up.

Maybe if you posted your blood test results, with ranges, we'd have a better idea of what's going on.

You say you had Grave's, but I've never heard of doing a PT for Grave's, it's normally a TT. (Perhaps I've missed something.) But, how was your Grave's diagnosed? Did they do TRAB or TSI tests?

Failing that, I would suspect your medical notes. Some have been found to be works of pure fiction!

Mrsbuns profile image
Mrsbuns in reply to greygoose

Hi greygoose my Graves was diagnosed 30 years ago and I had the operation in 1995 - classic goitre and eyes and at the worst went down to 6 stone - but have no idea what levels or anything. At that point I trusted that doctors knew what was best 😉. The doctor who did my scan today checked my record and it certainly said partial thyroidectomy - so perhaps as you say a work of fiction 😆

greygoose profile image
greygoose in reply to Mrsbuns

To be honest, it wouldn't surprise me at all! I know some of my records would probably win the Booker Prize! I don't see how a thyroid can completely disappear if it weren't removed, because even with Hashi's, it leaves a little dried-up pea-shaped thing. But, if it was 30 years ago, there's no way of proving anything. Best forgotten, I think, and concentrate on the way forward. :)

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