Evidence showing why we can be ill with "normal... - Thyroid UK

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Evidence showing why we can be ill with "normal" thyroid blood tests.

CathyT profile image
9 Replies

Not new research (2002) but first time I've seen it and pretty powerful. I wish I'd known of this years ago.

m.jcem.endojournals.org/con...

It's worth ploughing through but here's my take on it...

May be useful for those who are struggling to get treated in either of these situations:

A) are "subclinical" (abnormal TSH but normal T4 & T3)

Or

B) have all results within range but you are unwell

It supports what many of us know to be the case - that "normal" thyroid levels vary between people: what is normal for one person may not be normal for another - and explains why using reference ranges is leaving many of us ill.

It shows that we each have our own individual "normal" thyroid levels, and that an individual's degree of fluctuation occurs within a much narrower range than the degree of variation BETWEEN people.

As a result, it shows that lab reference ranges that are established using a broad population of people CANNOT be relied upon to accurately determine whether an individual has thyroid disease.

It is the evidence that may have helped me get diagnosed many years earlier as I'd had several "normal" thyroid blood tests over several years whilst I was getting more and more ill. I eventually was diagnosed by comparing the change in my levels, by showing my GP that my TSH had been steadily climbing towards top of range and FT4 falling.

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CathyT profile image
CathyT
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PR4NOW profile image
PR4NOW

You might find this of interest. It only plays on a PC, Mac does not have the plugin. It is fairly short, 17 minutes or so. Click on TSH Reference Range Redefined: What does it Mean and What Should We Do?

site.blueskybroadcast.com/C...

This is from the American Thyroid Association seminar in 2003. Unfortunately the information takes forever to filter thru the medical field. Anderson's study was actually the fifth to be done on the 'low index of individuality' of the TSH, T4, T3 and Tg test. This also explains why the Gaussian curve for the TSH has a 'shelf' on the right hand side.

You also might find Dr. Spencer's presentation of interest. You need to download both the 'notes' and 'presentation' pdf's and open them side by side so you can read the notes as you look at the slides. PR

aacc.org/resourcecenters/ar...

CathyT profile image
CathyT

Thanks a mill PR4NOW, I'll check it out. Sounds really interesting.

PR4NOW profile image
PR4NOW in reply toCathyT

CathyT, One of the best books for Hashis I think is Izabella Wentz's book, she is a Hashis patient and a PharmD.

thyroidpharmacist.com/1/cat...

She also has a newsletter you can sign up for. PR

CathyT profile image
CathyT in reply toPR4NOW

Oooh thank you! She looks really interesting! Haven't heard anyone (credible!) claiming that Hashi's can be healed before. I'm so glad I'm getting well enough to be able to read again! Lol

Marz profile image
Marz

All my thyroid function tests were within the ranges - only the high anti-bodies and a scan revealing nodes gave the Hashimotos diagnosis back in 2005. Also have Crohns. Izabella's book is well worth a read and her Newsletters are excellent - full of information....good luck !

CathyT profile image
CathyT in reply toMarz

Hi Marz, I'm not on here much so don't know your story but I'm so glad you got past the usual blocks and managed to get those tests done. I guess you either had a smart doc or put up an impressive fight? My life was wrecked by the time I'd learned enough to make waves. Hopefully on right meds now though and starting to look into getting health back. Will certainly order that book! X

Marz profile image
Marz

...glad you are on the road to recovery. I moved to Crete when I retired in 2004 and an irregular heartbeat took me to the GP in the village after almost two years. I was 59 when I was diagnosed and had had over 40 years of illness. My last op here on a benign tumour in the hip region was no 13 - probably a hangover from the ileo-caecal TB I had in my 20's. Crohns also diagnosed at that time....

The GP glanced at the slip of paper given to me by the UK docs - and asked if I had ever had my thyroid tested. To my knowledge I had not. It was done immediately and she phoned one of the Diagnostic Clinics in Chania and arranged the ultrasound for the same day - I think it was 8 euro back then ! Results within two days and I started on 25mcg. OK the system is different here and she was a private GP - but most people go there - but it is so much cheaper than in the UK. We do not have medical insurance either but still think it is worth paying for a prompt and efficient service. We also keep our own records - so if anything gets lost then it is down to us !! At least we have choices....

Because of so much illness in my 20's I just kept thinking the fatigue/aches and other health issues were linked and just kept going with a career and family ! Just the occasional op for more Crohns resections. I come from farming stock going back generations - and you cannot be ill when cows need milking ! Not that I have milked any btw !

I feel my life in Crete has been part of my healing journey - warmth for the Fibro - swimming lots - walking my wonderful Greek dog - tennis - and I teach yoga a couple of times a week. In spite of the government problems in Greece the quality of life is good....so much is free and the rest is value for money ! Also you can buy your T4/T3 medications from the Pharmacies without prescriptions - albeit I am on T3 and the GP is aware.

A recent colonoscopy revealed a healthy gut apart from Crohns lesions that were low to medium - so lots of positives there. I refused the medication suggested as I believe my present regime is doing the job....in particular the T3 and The VitD - which is as we know is anti-inflammatory and a steroidal pre-hormone. There has been lots about Crohns and VitD - so I feel it must be good for healing the gut generally....

So it's not good all the time and I am struggling with a nerve problem in one leg - ouch ! and a problem shoulder ! The back is a constant companion when it comes to pain but after yoga it feels good - which is the mind body connection - during practice the mind is emptied and filled with all the positives. Challenges overcome on the mat help you to overcome them in life.... Had back surgery in Germany in 2007 which has left my legs weak and my feet numb...could be worse ! At 5'11'' there's a lot to keep going !

Apologies for the ramble - at 6.30 am I am more awake than later in the day ! Wishing you wellness soon........have learnt so much from this forum which has helped me to fine tune things...so hope you can too.

How I would like to be able to bookmark this.

vajra profile image
vajra

Thanks Cathy. One indeed wonders given that respectable research like this is out there what its going to take to get the profession and the system to act accordingly.

I've said it before, but it's increasingly clear that the constraints to our obtaining proper treatment of thyroid and related illness are not not technical or medical. They are instead of a self interested cultural, professional, commercial and bureaucratic nature, and are rarely driven by the interests of the patient...

One has to wonder what the position is across the remainder of the spectrum of medical activity - but it seems unlikely to be much different...

ian

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