Thyroid cancer/TSH/Alzheimers: For me and I... - Thyroid UK

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Thyroid cancer/TSH/Alzheimers

Margo profile image
10 Replies

For me and I presume for others who have had a thyroidectomy due to cancer, we are required to keep our TSH very low in case of reoccurrence of cancer. However, I read somewhere (sorry can't remember the source):-

Women with TSH below 1.0 and those with a TSH above 2.1 had a greater than two-fold higher risk of developing Alzheimer’s Disease.

Does anyone have an opinion on this please?

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Margo profile image
Margo
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nobodysdriving profile image
nobodysdriving

I have an opinion alright: sounds 'cobblers' to me

by the way my mum's TSH was 1.7 and she got Alzheimer's disease age 50!!! so did my grandmother (same age), by 3 years later she was in ADVANCED stage, by 60 she was bed bound and by 69 finally died.

In my mother's case she had pernicious anaemia, she had a blood test result showing it but they 'never' treated her for it, I am 'so angry' about this inside you can't imagine, I sing Dr M praises EVERY DAY as she's the one who has put me on more frequent B12 jabs when I was diagnosed with the same as my NHS GP kept me on a low 350 level with symptoms and still denies I needed the jabs any more often. They gave my mum a horrible life/death and they were going to do the same to me.

Margo profile image
Margo in reply to nobodysdriving

What a sad story. My mother had vascular dementia, and feel, sure she had thyroid issues alongside having anaemia, and like yourself and your mother was not treated. I have B12 injections monthly for Pernicious Anaemia. Sometimes with this terrible thyroid brain fog, I forget what I have learnt, and indeed you are right, so hopefully you and I won't end up like our mothers.

Thank you for your reply Nobodysdriving.

nobodysdriving profile image
nobodysdriving in reply to Margo

yes, at least their 'horrible' experience has helped us in turn, we won't end up like that! My GP refuses to give me B12 more often than 3 monthly, monthly would be like a 'dream come true' :(

Margo profile image
Margo in reply to nobodysdriving

Yes I agree.

It seems more the norm to have B12 shots every 3 months, I know I am extremely lucky to get mine every month.

There are so many people out there being neglected, it's a scandal it is still going on. Today in the press they were trying to blame people's hygiene (they are too clean), for the rising numbers of Alzheimer sufferers.

Numberone1 profile image
Numberone1

My mother in law recently died of vascular dementia. She also had hypothyroidism and it was being treated but Im never sure of her levels etc.

Margo profile image
Margo in reply to Numberone1

Seems to me, it the medics looked more closely at Vascular Dementia/Alzheimer's they would fimd a thyroid connection, but it strikes me they don't want to. It is more profitable for those concerned to find another miracle pill, creating vast wealth for the pharmaceutical companies.

editfmrt profile image
editfmrt

Margo - I think it may be the The Framingham Study. This page talks about it here:

hypothyroidmom.com/is-your-...

If you put the words: "higher risk of developing Alzheimer’s Disease TSH thyroid' into Google you will get lots of links to more information.

From a personal non medical point of view, I think there is a bigger picture than just the TSH levels - how many of the people in any of these studies have been looked at holistically? You only need to browse pages on this forum to see how many deficiencies co-exist (or are they the cause) with thyroid disease. There are many pages that link alzheimers with vitamin deficiencies.

I am so lucky that I don't have the extra worry about keeping TSH low to reduce the return of cancer risks - but gut istinct tells me I would want to keep it low and make sure all the usual vitamins we talk about on here are optimal.

As for family history - stories like the posters here sets me off on one!

So many of us seem to have similar experiences with relatives who had years of ill health ending in a tragic demise. My mother is just one who was labelled a hypochondriac and never got to the bottom of her illnesses and eventually died with stomach cancer. I obtained her medical records and found test results which clearly show she had pernicious anaemia amongst other things. Never diagnosed or treated. We know that B12 deficiency brings increased risk of stomach cancer. Need I say more? Her life was a misery which affected every member of the family and still does.

They didn't have access to information on sites and forum like we do now. GPs kept generations of people in the dark with no access to information and were treated like gods who could do no harm. Their secrecy protected them from ever being challenged. You can't challenge what you don't know.

Access to information is changing all that. The medical profession can't handle it and that's why you read so many posts of GPs that chastise or laugh at their patients for using the internet.

Three people on this little page: nobodysdriving, margo and numberone1, who all have similar stories to tell of family tragedy and it makes my heart ache. We see there are links don’t we?

It's a shame the medics don't spend more time on Google and listen to what their patients are telling them - it might make up for the lack of training and help them put the pieces of the jigsaw together like we have to do for them.

tegz profile image
tegz in reply to editfmrt

The good thing is that medics can't refuse a reasonable request for treatment,second opinion or referral.

Whether they like it or not- sites like this and the internet in general will make their position untenable ,eventually -and they will have to sort their messy front of house up.[Patient demands.Legal, Gov't reaction etc]

No doubt the cry will gfo up-'our beloved NHS won't be able to cope' but I feel that the money saved on wasted treatments and residential care [to name just two] would fund the slack in the accounts.Pharma can rein in. instead!

Then, maybe the average GP will be worth the 100K.

editfmrt profile image
editfmrt in reply to tegz

Hear hear

vajra profile image
vajra

Hi Margo. I had a TT for a cancer after many years of undignosed thyroid auto immune disease and hypothyroidism too.

This can't be advice, but like much of the dogma surrounding thyroid (the use of radio active iodine seems with improved surgical procedures that don't leave significaant amounts of residual thyroid behind to be falling into in a similar space - if a thyroglobulin test shows very low levels then there may be a case for not doing it) there's research about (a Scandinavian follow up study I think) that suggests that suppression doesn't reduce the incidence of repeat thyroid cancers.

It's not necessarily the reason, but the doctors and endos I've seen seem to have no interest/to attach no importance to achiving suppression. I don't even one has mentioned it.

In one way I wouldn't mind if they did - it would ensure that I had some extra hormone for 'stock'.

I know that I don't feel well if dosed to this degree. So my instinct has been to focus on fine tuning my replacement and/or other aspects of my situation to get me feeling as well as I can possibly be - on the basis that the body will sort it out if it's not left having to do so with one hand tied behing its back.

I can't speak for development of Alzheimers, but can't help feeling that it's quite likely at least in part another legcy of undiagnosed hypothyroidism, poorly optimised replacement and/or other underlying chronic health issues.

ian

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