Not sure what to make of this study.

The final sentence is utterly depressing, especially in light of recent tragic events posted about on here. Is it possible the real causes of death are now recorded differently? That the cause of the final symptoms are less important?

qjmed.oxfordjournals.org/co...

[Hidden]

Laladrew,

Thank you for this. The cause of my husband's death in 2004 was never established. It was clearly as a result of years of undiagnosed and untreated hypothyroidism, leading to

atrial fibrillation and as Caroline and I now know from our recent trip to see a doctor in California probably aggravated or perhaps caused by a lethal mould toxin. At his inquest, even the coroner (herself a qualified doctor) had no idea how to interpret thyroid test results and I had to explain to her how to do it from the witness stand.

Consequently, not a word about thyroid on either death certificate or coroner's report.

I wonder how many others have gone unnoticed.

Jane x

[greygoose in reply to Hidden]

Most of my family, I truly believe. There are a multitude of 'causes' on the death certificates, but I look at them and think "yes, well..."

[PinkNinja]

I also wonder how many are not labelled as thyroid related because the TSH was below 10 And also how many hyperthyroid deaths were not noticed!

[PinkBear]

Illness is recorded as something else I think that's where the problems start I know a lady who's elderly she is hypothyroid and clearly under treated she takes medication for high blood pressure, high cholesterol, pain, constipation, acid reflux, IBS & even had a pacemaker fitted due to having a slow/ irregular pulse, Hypothyroidism has not been on any of the hospital discharge notes. I think the older generation believe what they've been told, that thyroid disease is easily treated and not the reason for ongoing symptoms and wouldn't dare question their Gp. & the recent heart foundation advert saying high cholesterol is the biggest cause of heart disease in women, they don't seem to know that hypothyroidism causes high cholesterol it winds me up that thyroid disease isn't taking seriously and that is scary

[Hidden in reply to PinkBear]

Cause of death on my mother's death certificate was pneumonia, but she had numerous things wrong with her including hypothyroidism for which she was prescribed thyroxine. The immediate cause of death was indeed pneumonia, but her ill health was not caused by pneumonia. The pneumonia only reared its head because of the poor care she received. I'm sure this is what happens in many cases. Jane x

[greygoose]

Just read the article - what a load of rubbish!!! I don't think these people had the first idea when they did their research what thyroid is all about! Did it not occur to them that the reason the hypothyroidism and thyrotoxicosis is less often mentioned on the death certificate is probably that no-one had any idea the death was due to that?!?

All the proof we have on this forum is that the standard of care has gone down, not up, for this very same reason. I'm outraged!!!

Grey

[sadiestairwell in reply to greygoose]

Totally agree, greygoose. Profound ignorance is a killer.

[nightingale-56]

Maybe, if they treated the thyroid problems optimally they wouldn't have so many other illnesses to treat, which would not make them money, and they know this. Beginning to think that NHS is just one big money-making machine!

[helvella Administrator Thyroid UK in reply to nightingale-56]

Trouble is, it is not simply the NHS. Whatever system we had here we would probably be saying much the same about actual treatment.

[nightingale-56 in reply to helvella]

Can see your point Rod. This country is getting so mercenary!

[helvella Administrator Thyroid UK in reply to nightingale-56]

Don't even restrict your view to the UK!

[nightingale-56 in reply to helvella]

Guess not, just people all over getting so greedy.

[helvella Administrator Thyroid UK]

I have been mulling over whether there is anything that could be made of data such as "tox screen" from PMs. Say, a consistent occurrence of very low (but probably within range) FT4, or elevated TSH, or, I don't know!, something that points a finger in the direction of thyroid.

It is so easy for us to become obsessed, and maybe I am, but obsession does not mean that the relationship between thyroid levels and disease is not of immense importance.

If I could convince myself that I knew what to do with them, I might be thinking of working out how to get these test results. I would not be surprised if such data could be made available, even if anonymised.

Rod

[Hidden in reply to helvella]

We would need to know what data was collected. I suspect there is a huge number of death certificates where the immediate cause of death is mentioned e.g. pneumonia frequently in the elderly including both of my parents, or in a RTA etc. but no mention of other conditions which may have indeed been the primary cause of decline, especially in the case of undiagnosed thyroid problems. In my husband's case for example he fell of a ladder a couple of months before he died. Had he died then it presumably might have been recorded as broken neck or some such thing. Jane x

[helvella Administrator Thyroid UK in reply to Hidden]

I am with you that the certificates will not reveal - but if the actual blood test results were available... ?

(Of course, that assumes thyroid is even tested. If not, I would like to see it imposed as a required in at least one coroner's area so that we could find out more.)

[Hidden in reply to helvella]

Thyroid tests were done in my husband's case (North Devon), but don't know if this is a general rule. Jane

[Framboise]

This is interesting, thanks for posting it, but note it says "Most of the decrease [mortality for acquired hypothyroidism] occurred during the 1980s." I wonder if that ties in with the introduction of blood tests for diagnosis in the late 60s and 70s. It's a shame they used 1979 as a starting point, going back further might have shown more of a trend.

Three of us in the family have done genealogical research to compile family trees going back to the early 1600s, as a result I have copies of various Death Certificates and it was only when I saw one in particular that I realised cause of death is noted as the last event in a chain of illnesses and conditions. So many people are said to have died from Pneumonia etc., when they had underlying conditions which kept them bed-bound, hence pneumonia. Some have several causes listed, but it must be easier for a doctor to just give the obvious one and prevent any questions about care, diagnosis etc., then there are the ignorant who can't put two and two together or who fear being questioned if they do.

[helvella Administrator Thyroid UK in reply to Framboise]

Lack of access to the full paper stops us really understanding what went into it, why, etc.

I think we will only really start to see the picture and patterns when we reach the stage of Death Certificates being a potted medical history - almost regardless of whether the cause of death is seen to be related to anything.

Rod

[shaws Administrator]

It is a very depressing comment. Maybe we should write to Prof Goldacre. The fact that autopsies aren't done for every death they cannot possible say that it is due to better care. It is most probably that people aren't diagnosed due to the method of detection used nowadays.

Dr Lowe has said the undertreated/undiagnosed patients are apt to get either diabetes, cancer or heart disease (take your pick) but all of these EXPERTS obviously would not agree with this. As we know, any 'other health problem' are presumed to be not associated with hypothyroidism and are referred elsewhere, but it still doesn't solve health issues.

[helvella Administrator Thyroid UK in reply to shaws]

I think it worth a go - some of these paper writers actually *appreciate* people responding. Let us know what response you get!

[Hidden]

YOU ARE SO RIGHT,MY MUM HAS BEEN HYPO BUT NOT TREATED FOR IT SO AT 62 SHE HAD HEART ATTACK ,DID THEY TREAT THE THYROID NO THEY GAVE HER STATINS BLOOD PRESSURE TABLETS ETC LATER AT 83 BECAME DIAB , THEN HAS BEEN GIVEN LISINAPRIL, AND METFORMIN SHES NOW 85 , CAN,T HELP THINKING IF THEY HAD TREATED HER THYROID SHE WOULD,NT HAVE HAD TO SUFFER ALL THESE YEARS OF ILL HEALTH,I FEEL SO CROSS ,BUT AT LEAST I AM TREATED FOR MY THYROID!!!

[Hidden]

I think my mum is hypo too, but save shaking the doc violently - hmm keep that thought ....................................nah may get into a little trouble) help ain't gonna happen with oldies (too scarey for them) & read a thing yesterday about hypo in elderly helping longevity? hibernation helps in certain situations I guess.

Dad died 'cos he had a pituitary tumour, acromegaly and enlarged heart (GH controlled for many years by piggy hormone - hospitalised meds taken away!) but because some rogue squamous cells were found in lung - then it was lung cancer... hmmm.

His Dad, 3 sisters and brother died in 40s/50s of 'dropsy' - guess I'll be off to Spain then, see ya!

J x

[alangardner in reply to Hidden]

couldn't agree more with your comments .........just as a parting 'shot' I hope you enjoy yer holi in spain -------take plenty of euros [ those in Cyprus are losing as we speak ]---------have a good one don't forget the sun tan cream/lotion

[tulula59]

Can you imagine the fuss if those who signed off death certs started saying cause of death, 'untreated hypothyroidism'.

Don't try and tell me that the medical profession doesn't look after it's own!

(Notwithstanding the fact that there are some out there that do go by the oath of 'do no harm' of course. I'd hate to upset anyone!)

[Hidden]

Thanks for all taking a look at it. That was my reaction to it too, one of gobsmackedness, if that be a word

I think it is worth writing to the author for a bit more background.

I agree tulula that they stick together. When I finally saw my medical notes from thyroidectomy where I almost suffocated by hematoma post op, the incident managed one sentence and it was so underplayed, despite being a medical emergency, catastrophe and terrifying - was something like 'laladrew was complaining of breathing trouble and we evacuated wound for her comfort' no mention of the scale of emergency, the near miss, the fact my husband was warned to prepare for the worst, the blood eveywhere, the fact i was AWAKE and with the hands scooping clots out my neck in my room. I know they have to remain factual but even so, it was dressed down for sure.

[shaws Administrator in reply to Hidden]

Lala,

What an experience you went through and, as you say, played down. I should think an experience like that would give you nightmares for years. It is a true HORROR story. What was said in the Scottish Parliament was mild by comparison.

[Hidden]

So sorry AP about your mother. It sounds, reading between the lines, that there were lapses in her care

I suppose it's the nature of hypothyroidism that you are not likely to die suddenly, it's not an acute phase illness for the most part and so that might explain the study conclusions. Like you say, by the time the hypothyroid illness has killed you, you can take your pick from any amount of symptoms caused by it that finished you off, and the cause will not be noted or looked for. Depressing.

[Soldieress]

wow - sorry to hear your family had to go through that.

[MaryF]

Well said! Mary F x

[brimstone]

sadly this sounds all to familar to me when my mum died some years ago her course of death was recorded as heart failure, what they failed to say was what caused mums death was due to wrong medication being given she had an over active gland they did not take this into account and the medication she was given give her an heart attack the hospital did try to cover it up but I manged to find out the truth. Its left me very nervous about going into hospital.