when I heard the news of Fiona Phillips dementia diagnosis today, I just couldn’t help wondering what tests have been done to eliminate UAT as a cause of her memory loss, brain fog etc.
can we be confident of a diagnosis by exclusion if only TSH is used?
No, we certainly can't! Full thyroid testing is necessary:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
to get a full picture.
I wrote to Fiona Phillips years ago suggesting hypothyroidism!
Possibly Low B12 too . There are papers that suggest B12 deficiency can mimic early Dementia. Brain shrinkage too...
Hi Marz, not just early dementia either - my greatgrandmother's pernicious anaemia manifested as full blown dementia until treated, then it went away. In my grandmother it was anger and paranoia plus falling, Dad and I just get stroppy as well as the usual neuro stuff but at his lowest he too was getting paranoid, even though we've been on oral B12 for years. Mum had a dementia diagnosis but we know now that folate was low, B12 was low, blood sugar regulation was poor, thyroid likely not great, and she shouldn't have been on birth control and then HRT as we can't process oestrogen metabolites efficiently. Too late, wish I'd known. Bet they never even looked at homocysteine. Best wishes
Homocysteine rarely tested in the NHS - sadly.
Sorry to read of your family challenges 😔 Thank goodness we can learn from others here. 🌻
You are so right. A nurse chum, retired, who now knows how much the NHS weren't doing that they could have been doing said she was only aware of 4 instances of homocysteine being checked in her whole working life.
As a slight aside, does anyone have a link to any guidelines for what should be tested prior to diagnosis? A friend's mum has been diagnosed with Alzheimer's and I'd like to believe they have looked for reversible causes as well but have no confidence. She will need references as she is reluctant to think they haven't done everything that should be done. All NICE seems to say is 'undertake appropriate blood and urine tests to exclude reversible causes of cognitive decline' but as we know, that will mean TSH and serum B12 and serum folate and those are in no way adequate.
Thank you
functionalmedicinewimbledon...
I am not aware of tests required. Lots of on-line seminars from the US often feature the above Doc. Dr David Perlmutter has good website and books - including Grain Brain. More and more it is all about inflammation and the gut brain connection.
How does homocysteine play a role in dementia? Quick Google throws up blood clots.
It definitely does. I had raised TSH for 20 years - no treatment. I developed memory and cognitive symptoms plus a goitre, weight gain and a host of other symptoms. Levothyroxine dramatically improved my memory and cognition but so did Vit B12. I had been to GP concerned about Alzheimer's.
pernicious-anaemia-society....
Video within link above about brain shrinkage and B12 and more... Prof Smith.
A B12 deficiency can certainly mimic early Dementia. This is exactly how I felt before my symptom diagnosis by a Doctor in A & E. B12 injections greatly improved how I felt. This was in 2018 and improvements are still ongoing.
How often do you have B12 jabs ?
Every other day Marz . I have tried going longer but symptoms return. I take advice from PASOC on their forum on HU. GP was only prepared to inject every 8 weeks. So another DIY job!
Good for you for following through on what is right for YOU X
My friend of 65 years has been diagnosed with dementia and recently was moved to a care home near her son nearly 200 miles away.
For several years she suffered from anxiety and what I suspected might be symptoms of thyroid disease so I suggested ( more than once!) she have a full thyroid test.
Her response, " the doctors have done tests and found nothing wrong". She rejected the idea.
Clearly she, an intelligent but stubborn woman, was not prepared to listen to a non medic, so I watched her deteriorate. She thought that I see thyroid symptoms round every corner!!
I may have been far off the mark but at least a full thyroid test would have proved that.
So absolutely "No!!".....a TSH test is a proven unreliable marker.
I visited her just over a week ago week and wish I could have been more assertive.....but I know that would have caused upset in her family.
It's a double edged sword
Sorry to hear this DippyDane.The other possibility is very low levels of estrogen... Research is now showing that estrogen blocking therapy when applied for 5years causes defunction in higher executive thinking and increased likelihood of developing Altzeimers!
Currently the recommended blocking therapy is 10years for breast cancer. I did 7 & felt so awful I had to stop. My gynae tells me because I'm post menopause the estrogen levels will never return to normal. Such treatment devastates the body physically too. I agree it has & for me the effects are permenant. My memory and thinking has improved.... A year since I stopped taking it but frankly it hasn't fully come back.
Am sure in the future it will be seen as barbaric.
But it also gives information on the impact on the body and mind of very low levels of estrogen. Altzeimers runs rife on my mother's side of the family.... all women. One can only wonder if this is a factor. Research only looks at the end product & pharmacology to slow or inhibit the process not the cause....because that's where big pharma make money...
All my friends who have had HRT report more energy, improved memory & greater clarity of thinking.
I think what has been done to me has indeed extended my life but prematurely aged me by decades.
so sorry to hear your experience
It's a chicken and egg thing. I have no doubt my bc would've returned & finished me off without that treatment but QOL is important too. Often BC treatments are used at a point when they don't know the full implications or consequences. Estrogen blocking therapy has been around for years and women on it have reported side effects for years that have largely been ignored until recently. Finally when they do look into it they get a shock....A healthy skeptism is a good way to go but essentially my body clearly wasn't designed for longevity. 😂🤣
I despair when I hear people say that DD. Just think of all the ‘medical mistakes’ that happen. That attitude is one you come across regulating. I always feel I could pick peole like that up and give them a good shake - but what can you do?
Sadly not a lot!
I was brought up to listen to the voice in my head that asked, "Why?"I guess it makes me insufferable at times!!
Maybe so but insufferable to whom? ... Medics!! Glad you shake their tree!! 🤣😂👍👍👍
So sad for you and your friend.
I too have a friend who has slipped into dementia - a retired medic. She is Hypo and when I was diagnosed in 2005 I asked if she had Hashi's too. She had no idea and said taking a pill was all that was needed. I fear she was undermedicated and suffered other deficiencies. A truly wonderful character - I miss the girl she was so much.
Two other girlfriends are also affected - both avid dieters - so lacking good fats perhaps ? Cannot help thinking those low fat diets of the 70's are causing problems now.
A diagnosis of exclusion is so risky. Multi factorial causes, so how strange is it that there’s an attempt to disprove each one, not treat each possible cause. I fear that many with UAT are included under the dementia diagnosis. How sad is this.
"I miss the girl she was"....We shared a lifetime of highs and lows, we were each others bridesmaid/ matron of honour. How archaic that sounds now!!
Funny...was just talking with my husband a few days ago at breakfast, as I delved into the butter dish, about the low fat madness of the 70s. Makes you wonder.
Hope you are feeling as good as can be.
Sorry to hear this Martz. So sad...Estrogen post menopause is stored in fat so it wouldn't surprise me.
The plus of hypothyroidism is to get optimum appropriate treatment you learn to be your own advocate, and gen up. Once aware of the ignorance of many you never view doctors in the same way ever again!
Having said that my next door neighbour was diagnosed with hypothyroidism. He is on levo. Low dose. He has change, deterioated radically in the ten years since. But he insists he is fine. He complains of various ailments, all sound familiar. He just trusts his doctors. Now he is 80 they will say his lack of energy, poor memory is his age... It's not!
And a beautiful tendered much loved garden is completely untouched with waist high weeds etc...but he insists his thyroid is fine on 75mcg. So sad to see.
I wondered about low vitamin D in Fiona. She's fair and slim so may be insufficiently dosed, as so many are nowadays.
Karen
alzforum.org/news/research-...
I read recently about a study comparing active seniors with inactive seniors and rates of dementia not corresponding with amyloids but with activity. Many active folks had amyloids show up on imaging which would have confirmed an Alzheimer's diagnosis yet they had not signs of dementia.
I have a sneaky feeling the real reason thyroid levels and nutritional deficiencies aren't considered in dementia and neurological-muscular conditions is that the endo's are strongly into protecting their turf and that nutrition is considered woo by many physicians. And these attitudes are supported by drug companies. Gee - if pig thyroid and a better nutritional base could improve things, who would buy their drugs?
"Gee - if pig thyroid and a better nutritional base could improve things, who would buy their drugs?"
So, so, true, Poniesrfun.
I remember a good number of years ago Fiona undertook a genetic test for a TV show. Her father or perhaps even both parents had Alzheimers and I think she wanted to know her chances - although I recall she was reluctant and finally pretty shocked at the outcome of the test. Put me right off genetic testing. She is not what you might call ‘typical’ in appearance of someone with thyroid issues but that’s never stopped anyone having issues. Since that genetic result, she has been pretty much absent from TV I think. This is why even getting the deiodinases checked needs separate counselling; although I understand the standard of counselling is dire. It’s a devastating result if you find you have a tendency towards Alzheimers or the like. At the moment I am sticking to my understanding that just being unable to convert T4 to T3 can bring about pretty much the same end. We must continue to fight for our T3 needs.
PhD in Thyroid Disorders 
Is under active thyroid linked to functional neurological disorder?
History of eating disorders and thyroid problems
