TSH is NOT the best diagnostic: Having a browse... - Thyroid UK

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TSH is NOT the best diagnostic

diogenes profile image
diogenesRemembering
9 Replies

Having a browse today for articles.

This review discusses the role of TSH in diagnosis and comes firmly to the conclusion it is not.

REVIEW

Front. Endocrinol., 16 June 2022 Sec. Thyroid Endocrinology 

doi.org/10.3389/fendo.2022....

 Redefinition of Successful Treatment of Patients With Hypothyroidism. Is TSH the Best Biomarker of Euthyroidism?

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diogenes profile image
diogenes
Remembering
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9 Replies
carorueil profile image
carorueil

Thanks I'll download this and hope that if I bring it along my endo will 'agree' with the science! thank you

DippyDame profile image
DippyDame

For the more subtle degrees of hypothyroidism there is sufficient evidence to prefer thyroid hormone levels and in particular FT4 levels over TSH levels for the diagnosis and selection of treatment candidates. 

At least they are looking beyond TSH .... but FT3 still seems to be the poor relation.

Is it just me......!

LindaC profile image
LindaC

Apologies diogenes - sometimes, something catches one's eye and 🔥🔥🔥

As many are aware, the test devisor - Robert Utiger - said decades ago, being 'confirmed'? by UK researchers that TSH was not reliable to solely confirm. Indeed, Utiger states TEMPERATURE as being a better indicator... as I sit here, having experienced [yet again!] on several occasions during this recent heatwave, temperature under< 35 C [sleeping fully clothed, under an electric over-blanket ON ALL NIGHT + multiple bedcovers], with only Endocrinology to be referred to... same department that in 2008/2009 that I was not hypothyroid... And 'I'm Still Waiting' for such appointment!

GP accepted Dr Skinners Feb 2010 dx and prescribed Armour T for many years - NHS funded - before yet another endo in mid-2015 stated that I'd never been hypothyroid and advised GP to stop Armour... on the basis of??? {I was taking T3 so... but I'd have liked to continue with both!] With no reliable/valid 'results' before him to inform of ANYTHING to do with this patient, oh, except for a secretive Beta-Crosslaps test [not conducted to protocol + with horrific results], being used to discredit me for taking Dr P advised 'for life' T3. NB. I only discovered this horrific test result TWO years later... likely some scam to scare me off T3!? On him mentioning 'bones' to me, I'd insisted on a DEXA = fine, aka which seems to have 'stole his thunder', Test kept from me: results indicating Paget's Disease of the Bone [my paternal G'father died with] or bone cancer! I contacted him to re-run this test; of course, he refused, snidely stating how sorry he was to hear that I was still ill... having suggested, "Try Neuology instead" ;-) A most disgusting GP referral [mentioning NO signs/ symptoms but having a huge dig at me] meant that this department wouldn't touch it.

I only accepted that referral due to my Jan 2015 'freezing shins' [I later discovered 2019 that this was due to my 2013 long-neglected - despite twice advised in 2017 that this was 'probable S1/L5 R leg referred pain'. Ignored until horrific turbulence in Nov 2018, where I had to 'fight' for an MRI... which confirmed spinal damage. Despite my doing everything I could for myself, by 2021 the MRI came back Abnormal: this is the tip of the iceberg!

When a thyroid is not functioning well... mine started with my heart in 2003, then 2007 - heart issues confirmed [privately - Cardiologists first Q was re 'thyroid status' - with even their silly little ranges in 2003, being start of palps = TSH 0.14 just within range + 2007 TSH 0.11 just within!] BUT neither him nor I were told of this [only seen in M R in 2018]; hence so much of our health 'goes to hell'! See where over-reliance on TSH can take people but mine was even ignored back then! So many people on here suffer via this 💩

tpauk.com/main/article/crea...

Tythrop profile image
Tythrop in reply to LindaC

the problem is that the these types of doctors hold to the fantasy that they are the sole arbitors of whether we are ill or well .Only when they begin to recognise that they are in an equal partnership with patients will things change, ..we are all in this together surely .

LindaC profile image
LindaC in reply to Tythrop

Absolutely - the times I look and think, "How long have you lived in my body to be able to decipher what's going on for me"? A great doctor will say, "Listen to your patient and they will tell you what's wrong with them". A good doc will listen. A mediocre one will superimpose their own views. A hopeless one will deem the patient to be a hypochondriac... of course a small % of patients have such tendencies... hardly surprising! The emphasis must lie with their skills to rise above their own prejudices. Take care and be well. xox

abirose311 profile image
abirose311

I was warned, in 1990, that my thyroid 'might become underactive' after the radioactive iodine that I was given to treat Graves (which onset 3 weeks after H1N1 Flu jab). I was told 'if that happens, it's easy for us to correct with a little thyroid hormone'. What a complete whitewash! The reality was that for 3 years, my GP ignored my plummeting T4, progressively low mood and weight gain, prescribed me Fybogel for constipation (God forbid that she might have suggested a banana and more vitamin C) and diagnosed Alopecia when I developed large bald patches on my head. She repeatedly told me that my blood tests showed my thyroid to be normal, despite watching the levels drop consistently every test, BECAUSE, like many others, my pituitary gland was not able to respond to my Thyroid crisis and did not spike my TSH. When I finally paid to take myself to a private endo, he didn't even wait for blood test results to start me on Levothyroxine! He said he could tell from my reflexes and the dryness of my skin! Can any doctor explain the utter madness of assessing thyroid gland function via pituitary gland function, without first ascertaining that the pituitary gland is healthy, fully functioning and able to do its job? Without that knowledge, it seems absolutely useless to use its function to diagnostically assess the function of another gland. However, it does keep folk unwell and that sells lots of other drugs for those businesses who finance the training of our Doctors. Statins for the high cholesterol, anti-depressants for the crippling low moods, Fybogel to move the bowels, endless E45 and similar products for the endlessly itchy dry flaking skin, umpteen vitamins and minerals to compensate for sluggish digestion and low stomach acid, surgery to correct the eventual carpel tunnel syndrome ...I could go on and I'm sure others could add to this list. The best advice I have heard this year from a doctor, was 'Educate yourself'. When we actively engage in research and study, not only can we learn things of immense value to our health, but our brain rewards our mental labours by producing more dopamine, the happy hormone!

Musicmonkey profile image
Musicmonkey in reply to abirose311

So much of this resonates and makes me angry, although for me Levo wasn't helpful. Anything but treat the thyroid!

Tythrop profile image
Tythrop in reply to abirose311

your emotion is my emotion your anger is my anger , and whats nlmore your illness is real .The medical profession deny us the dignity of respect . Oh how I empathise .How I would love to subject them to extreme public humilliation . Xxx

Locky1971 profile image
Locky1971

I'm going to send a copy of this to my NHS endo who stated that tsh was the best way to monitor my thyroid as it shows the slightest increase.

So I rattled off July tsh 0.01, Aug 0.01,September 0.01, November 0.01 and January 0.01. I asked her how the tsh was the best way when July I was on 2 grains Amour. I had a hashimoto's flare and my heart felt like it was coming out of my chest in August so had to drop meds down to 1 grain to stop it. By the end of August I'd gone underactive again and was falling asleep with no energy during the day. So it went up slowly to 1.5 grains. It then went up to 2 grains in January. So I asked her to explain her comments when I could prove its not the best way to monitor my thyroid.

I had a private specialist who was really good but as hubby is off work because of long covid I had to go back to NHS levo, t3 and endo. But she did make me cross with her lack of knowledge. But she did add in t3 so I guess that's a plus. I'm now on 100mg levo and 20mg (10 twice a day) t3. Muscle aches and tiredness still but got to wait for 3 months before she'll test me again.

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