Unbelievable!: Hi, I'm new to the forum but have... - Thyroid UK

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Unbelievable!

Katepots profile image
16 Replies

Hi,

I'm new to the forum but have been hypothyroid for several years.

I have only recently discovered this forum and realised how important the thyroid is.

I was completely led to believe that being hypothyroid wasn't a problem by my GP. 'Oh your thyroid is low take levotjyroxine and all will be well. So blasé that for years I hadn't even done any research stupidly!

A friend recently gave me a book and I was so shocked by what I read.

When you are first diagnosed there should be a leaflet explaining the thyroid and all the symptoms you may have and just how important it is. I am going to start a lobby for this!

For years I have felt so unwell and have pretty much all the symptoms the most alarming being being my cholesterol as was always 3.2 and is now 6! (Last check anyway) and my brain function is so bad at times I thought I must be already going senile at 49! You start to feel like you are a hypochondriac as you know you feel so ill but it is just ignored and you are told there's nothing wrong with you.

I'm off for bloods and will insist my T3 levels are done as until recently I had now idea about them.

I feel so stupid I didn't research sooner but then if the medical profession didn't play it down so much, it's like they are trying to hide it.

I will post my bloods on and if anyone could help me decipher them I would be very grateful. I also am going to find an endocrinologist if anyone knows of a good one I'm the SW of England.

Thank you.

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Katepots profile image
Katepots
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16 Replies
greygoose profile image
greygoose

It's not that they're trying to hide it, it's just that they really have no idea. In all their years of training, they have about one afternoon on the endocrine system - so you can imagine how much - or how little - is said about thyroid itself. They are encouraged to believe it's no big deal, and to diagnose and treat by THS only, and treat by Levo only. Most of them Don't even know there's an alternative to Levo.

Don't let it make you feel stupid. It's not your fault. We aren't born knowing these things. And, yes, doctors should inform us. But if they Don't know themselves...

I was diagnosed 15 years ago, and only had a vague idea where the thyroid was - I certainly didn't know what it did. I Don't think my endo did, either! lol And, I remember clearly one evening, after a horrible appointment with her, when she said I wasn't getting any better because of my 'negative attitude' - nothing to do with her lack of care, you understnad - and I was sitting IN FRONT OF my computer, crying and wondering if this was the end of my life.

And, suddenly, I had this brain wave! What I need, I thought, is a book!!! lol So, I went onto Amazon, and typed in thyroid, and up came all these books. I was quite over-whelmed. I didn't know which to chose. So, I closed my eyes, and just pointed at the screen. And when I opened my eyes, my finger was pointing at a Mary Shomon book. And the rest, as they say, is history!

I was really Lucky that day, because I could have chosen a book so complicated and technical that I would have been none the wiser. But Mary's book was very clear and easy to understand for a brain-fogged hypo. And at the back of the book, was a link to her forum. So, I joined that, and learnt so much.

I've been around a bit since then, and am Learning all the time. But the point of this looooong story is to say that it never occurred to me to look on internet, even though the computer was sitting there right in front of me. So, you coldn't possibly feel any more stupid than I did at that time! lol

Take care.

in reply to greygoose

Well said greygoose x

greygoose profile image
greygoose in reply to

Thank you, Mango. x

Katepots profile image
Katepots in reply to greygoose

Thank you. I have the Mary Shomon book a friend lent it to me recently hence the realisation!

greygoose profile image
greygoose in reply to Katepots

Good old Mary, eh? It was a revelation to me, too. My endo had told me, quite emphatically, that there was no option when it came to thyroid hormone replacment - it was Levo or nothing!

in reply to greygoose

When my time machine is up and running, I am going back to visit that endo and tell her she knows nothing...and to LEVO well alone. lol x

greygoose profile image
greygoose in reply to

lol x

BeccyD profile image
BeccyD

I only found and joined a few weeks back also. I too had no idea how serious an issue being hypo is, until my doc dropped my thyroxine and started feeling worse than normal. I felt it was time to look into it a bit more.

I have learnt so much from the amazing helpful people on here and can't thank them enough for making me realise I'm not alone.

Joyful profile image
Joyful

My cholesterol was very high & they put me on statins - which, I believe, made me end up with Chronic Pain - I stopped them after about 6/8mths. They supress the good cholesterol you need in your body too! GP's are also getting a bonus for prescribing them! (Disguised as something like 'identifying high cholesterol risks'.)

I've been on T3 for a couple of years or more - normal cholesterol for the last year - and I'm a BIG lady! (No diet change needed - I eat pretty healthily anyhow!).

Hope you manage to find a way to optimise your treatment/care.

Katepots profile image
Katepots in reply to Joyful

Thanks, I'm looking into T3 now so hopefully will get sorted soon GP permitting!

greygoose profile image
greygoose in reply to Joyful

Joyful, cholesterol levels have nothing to do with what you eat or how big you are. It is made in the liver - because the body needs it. It's just that when you are hypo, the body becomes unable to process the cholesterol, so it mounts up in the blood.

There is no such thing as 'good' and 'bad' cholesterol - that is hype to make us feel bad about our levels. What they are measuring in a blood test is not the cholesterol in the blood, but the protein necessary to transport it. There are two different proteins, but neither of them are good or bad, just necessary to transport the cholesterol.

Big Pharma will do anything to sell statins - one of this centuries biggest evils - including bribing doctors and other people in the medical industry. They are making several large fortunes out of them, and plan to have everybody taking them eventually. But they do cause many, many side effects, including muscle pains, diabètes and even prostate cancer in men.

Hi Katepots, Welcome to my world x I had the feeling of Deja Vu. It's like a ton of bricks hitting you on the head when you get this realisation. On the bright side you have discovered it now and that's a good place to start. Good Luck on your journey, the lovely people on this forum will see you through it.

Best Wishes.x

humanbean profile image
humanbean

Regarding your cholesterol, please don't worry about it. If I had a cholesterol level of 3.2 I would be alarmed about it being so low!

Read this article by Dr Malcolm Kendrick and pay particular attention to the graphs :

drmalcolmkendrick.org/2012/...

Dr Kendrick's blog is well worth reading. He has also written a book which I can thoroughly recommend "The Great Cholesterol Con" :

amazon.co.uk/Great-Choleste...

You'll never worry about your cholesterol again if you read his book!

Katepots profile image
Katepots in reply to humanbean

Great thank you, I'll get reading, again!!

Katepots profile image
Katepots in reply to humanbean

That is really interesting, I've ordered the book :)

Rapunzel profile image
Rapunzel in reply to Katepots

Dr Kenrick rocks ! He's also written on us thyroid dudes

drmalcolmkendrick.org/2015/...

an impassioned doctor on board. Yay !

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