Hypothyroidism brings need for change! - Thyroid UK

Thyroid UK

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Hypothyroidism brings need for change!

Charlie-Farley profile image
14 Replies

Being diagnosed with hypothyroidism has pulled both my hubby and I up. Not least in terms of the need to be master of one’s own health. We are going to make some major life changes to ensure we enjoy not endure the coming years. We are selling up our wonderful guesthouse overlooking Morecambe Bay to start a more flexible working life that lets us stop/rest if we need.

I was under medicated for 6, months left on 25 µg starter dose of Levothyroxine (should have been started on 50 µg with increases following) before I was in mental and physical crisis and then GP got in contact with the local endo who advised the lab range only applies if not medicated and needed to aim for a much lower TSH and gave her a new ‘range’ to aim for.

In my last battle- this time with a junior Doctor, I was told I was normal and they would review in a year (full post floating around on Thyroid UK.). 20 mins later and increase in Levothyroxine secured I finally let her ring off.

So we are aiming to make some major life changes in the next year also and Dave will pursue one of his interests and I hope to dedicate some weeks/months to the study of the thyroid. I am pretty evangelical, but having seen the way the GPs are carrying on I’m reminded of that old adage a little knowledge is a very dangerous thing, so currently all I’m prepared to do is tell people about what has happened to me and tell them to join Thyroid UK.

I have a doctorate from Biological Sciences, but my area is more Environmental. So with this scientific grounding, I see some major lack in the medical profession especially in the interpretation of data (lab results). One might even say naivety. Their interpretation also seems to be reductionist and many do not look at the whole person. “Results say normal - off you go see you next year”. How the patient feels has little bearing on decisions.

N.B. I have even had results read out over the phone by the receptionist telling me that I am ‘normal’ when she was not even in possession of the information from the Endo, which would’ve actually contradicted that! So readers beware.

I’ll be studying and reading up to a level over the next few years and continuing to build and stay current. But need to effect life changes first to achieve this.

When I was hypo and struggling to concentrate the only book that I could manage to get my head around was ‘Be Your Own Thyroid Advocate (when you’re sick and tired of being sick and tired)’ - it was really useful and it started me on the path. Ultimately though Thyroid UK has saved my life. That is not an overstatement. Where I am now is in stark contrast to where I was six months ago.

Thank you all!

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Charlie-Farley
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14 Replies
Hylda2 profile image
Hylda2

Can understand where you are coming from. My husband was blue lighted to hospital and emergency pacemaker after receptionist said come in for bp test in 10 days!! Had to throw everything out of the the pram to get him seen.

Charlie-Farley profile image
Charlie-Farley in reply to Hylda2

Terrible- there’s too much emphasis on numbers in rages and not enough on symptoms- in fact I would go as far as to say if symptoms don’t agree with results they are in many cases inclined to ignore as they don’t fit 😱.

We all have to advocate for ourselves now. It is not an individual problem more of a complete system problem. It’s grown so big and the saving exercises are now biting into quality of care, training, medications, operations - just about everything.

Knowledge is self empowerment.

tattybogle profile image
tattybogle

I can heartily recommend my now semi retired life of walking on the beach looking at the bay everyday, over my previous one of rushing around knackered, cleaning, and changing beds while looking at it out of 'well to do' folks windows.... 'every cloud ' as they say . xx (obviously i haven't got 'enough' money anymore... but hey, the view is free and the waves don't charge to walk in them... so just find somewhere pretty to live with an Aldi next door and all will be well .. it's really nice having time to smell (and prune) the roses. Get a nice lodger ? ... they change their own beds )

I Heartily agree with your thoughts on the state of Doctors/Endo's knowledge being 'just enough to be dangerous'

Sending best wishes from the 'West End' , (which is the 'best end' .... as long as you look outwards)

Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

Tattybogle! Are we neighbours!? Yes to everything you have said 😘👍

tattybogle profile image
tattybogle in reply to Charlie-Farley

quite possibly

... depending on whether you see mountains from here.. or Heysham 2 from over there
Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

Well what do you know we are!

tattybogle profile image
tattybogle in reply to Charlie-Farley

thought so xx

Charlie-Farley profile image
Charlie-Farley in reply to tattybogle

I’m East at present- but we do intend to move once we sell up. Need quiet 🤗

Ruscat profile image
Ruscat

Maybe but be an idea to study associated B12, folate and Vit D deficiencies - to me a cocktail mix you need to get right and my GP is ignorant of all mentioned

Charlie-Farley profile image
Charlie-Farley in reply to Ruscat

Don’t worry Ruscat when I start to study it will be Holistic very much along the lines of environmental science. 😊👍

Ruscat profile image
Ruscat in reply to Charlie-Farley

Great keep me posted

DippyDame profile image
DippyDame

Good luck for your new adventures, it sounds as if you need a change and some time to "smell the roses"!

The state of both current diagnoses and the treatments of thyroid disease is a monumental scandal....altering this by opening both the ears and minds of the decision makers is proving to be herculean task!

There can be no other medical condition where patients find themselves in such a parlous state that they resort to self diagnosing and self medicating in order to recover.

But for TUK I may not be here now...simple as that!

Take care

DD

Charlie-Farley profile image
Charlie-Farley in reply to DippyDame

It’s bad enough the number of people who know they have been let down, the membership number of this forum is testament enough. We are the tip of the iceberg - the deferential patients who think this is how it is, still being mismanaged and think that they are getting the proper treatment that is just as scandalous - at least we have been lucky enough to find our way here and get informed enough to go and fight our corner.

DippyDame profile image
DippyDame in reply to Charlie-Farley

Indeed...I share your metaphorical soap box!

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