Hypothyroidism & Dementia: I was already aware of... - Thyroid UK

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Hypothyroidism & Dementia

bikebabe profile image
38 Replies

I was already aware of a link between hearing loss and dementia. However if this research is to be believed (and it will need scrutiny) it may cause anxiety for some of us! A double whammy for those with Pendred's hearing loss and hypothyroidism! There was me thinking it was the cancer /meds making me forget things!

aol.co.uk/news/thyroid-prob...

Regards

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bikebabe profile image
bikebabe
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38 Replies

Study author Chien-Hsiang Weng, of Brown University in America, said: “In some cases, thyroid disorders have been associated with dementia symptoms that can be reversible with treatment. ... no link was found between hyperthyroidism and dementia.

My reading of this is that hypothyroidism mimics they symptoms of dementia and with adequate treatment those symptoms dissipate. Rather than hypothyroidism causing dementia. :)

humanbean profile image
humanbean in reply to

My reading of this is that hypothyroidism mimics they symptoms of dementia and with adequate treatment those symptoms dissipate.

I think that is probably true. But when someone develops dementia how many people get an accurate diagnosis of the type and the cause? And people can have more than one type.

There are several different kinds of dementia and they probably have different impacts on the brain and are caused by different things. If someone gets dementia that is completely caused by hypothyroidism and nothing else then it might be reversed.

But not enough is known about Alzheimer's (for example) so some of us could get that in addition to hypothyroidism.

en.wikipedia.org/wiki/Dementia

This section of the dementia page mentions hypothyroidism as a cause of a reversible dementia - but if someone develops multiple different types of dementia they may be doomed :

en.wikipedia.org/wiki/Demen...

Chronic inflammatory conditions that may affect the brain and cognition include Behçet's disease, multiple sclerosis, sarcoidosis, Sjögren's syndrome, lupus, celiac disease, and non-celiac gluten sensitivity.[69][70] These types of dementias can rapidly progress, but usually have a good response to early treatment. This consists of immunomodulators or steroid administration, or in certain cases, the elimination of the causative agent.[70] A 2019 review found no association between celiac disease and dementia overall but a potential association with vascular dementia.[71] A 2018 review found a link between celiac disease or non-celiac gluten sensitivity and cognitive impairment and that celiac disease may be associated with Alzheimer's disease, vascular dementia, and frontotemporal dementia.[72] A strict gluten-free diet started early may protect against dementia associated with gluten-related disorders.[71][72]

Cases of easily reversible dementia include hypothyroidism, vitamin B12 deficiency, Lyme disease, and neurosyphilis. For Lyme disease and neurosyphilis, testing should be done if risk factors are present. Because risk factors are often difficult to determine, testing for neurosyphilis and Lyme disease, as well as other mentioned factors, may be undertaken as a matter of course where dementia is suspected.[12]: 31–32 

The form of dementia that scares me the most is Alzheimer's Disease:

en.wikipedia.org/wiki/Demen...

AmandaK profile image
AmandaK

They are being cautious, using words like 'may' and 'could'. The difficulty is the use of the word 'dementia' as dementia 'proper' can't be reversed.

Of course, the other difficulty is the definition of hypothyroidism - or lack of in the article - as presumably they are using TSH as the age-old standard.

Maybe they should also examine those with a formal diagnosis of dementia and test their thyroid levels and see if there is a correlation (including TSH beyond the so-called 'normal' range).

My Mum had classic hypothyroid symptoms but was never diagnosed because her TSH was in range. She went on to develop early onset Alzheimer's in her early 60s - or did she? Maybe it was undiagnosed hypothyroidism all along?

humanbean profile image
humanbean in reply to AmandaK

Maybe they should also examine those with a formal diagnosis of dementia and test their thyroid levels and see if there is a correlation

And B12 and folate should also be tested.

pennyannie profile image
pennyannie

Hello Bikebabe :

For what it's worth when not optimally medicated I believed I was dealing with dementia -

I was loosing whole sentences, not just words and one day couldn't work out what the kettle was for.

I'm with Graves post RAI thyroid ablation and now self medicating with NDT.

I am much improved as is my dyslexia and my T3 high enough for me to function.

cbraffe profile image
cbraffe in reply to pennyannie

I am going through the same thing. I decided to see a private consultant on Tuesday he asked me how old I was, I started asking my husband, the both thought it was a joke but I have moments when I just sit there and can't think straight. I also had graves followed by a thyroidectomy in 2019. Throughout the pandemic I had no blood test . Going forward I will pay for my health. Fortunately, was prescribed t3

pennyannie profile image
pennyannie in reply to cbraffe

Yes, I think had I had someone living with me, I wouldn't have become so ill as they would have done something about me sooner.

I think having support at appointments vital as now looking back I was totally compliant believing ' they must know more than me " despite the fact I thought the opposite, and just thankful I found this mazing forum when I did - and now stay away.

shaws profile image
shawsAdministrator in reply to cbraffe

That's good you were prescribed T3 and it is possible that we can have a 'blank' when we're asked a question but we've been deep in thought before it and trying to fathom out why a particular symptom has appeared/or disappeared.

ZoBo profile image
ZoBo in reply to cbraffe

Yes my situation is similar. What has T3 done for you?

ZoBo profile image
ZoBo in reply to pennyannie

Interested to read your post. I am similar to yourself. Had the op in 2013. The last 3 years or so really struggled with memory and certain tasks. Quite disturbing. I am seeing a different endo next month and suggesting T3. Do you think at this point what else I should suggest . I also have Fibro to add to everything else. Thanks for any input...

cbraffe profile image
cbraffe in reply to ZoBo

I am yet to start the T3. I missed the post on Saturday It will be delivered today. I will give you an update in 2 weeks time. I have read that it also comes with its own side effects. I tell you it is a struggle. I am at work logged on at 8, have barely done anything.

ZoBo profile image
ZoBo in reply to cbraffe

Thanks so much that's kind. Good luck with it. I had to give up working full time! The first lockdown did me a favour!

cbraffe profile image
cbraffe in reply to ZoBo

I am thinking of doing the same.

pennyannie profile image
pennyannie in reply to ZoBo

Best thing you can do for yourself is to start your own post detailing current thyroid blood test results and ranges and forum members will respond to your situation and advise accordingly.

Tippet18 profile image
Tippet18

My concern is a statement in the article: People who took medication for hypothyroidism were three times more likely to develop dementia than those who did not take medication, the study found.

The majority of hyperthyroid patients are taking medication to manage it - now the choice is one of uncontrolled hyperthyroidism or medicated + likelihood of dementia. Neither is a good option…

humanbean profile image
humanbean in reply to Tippet18

People who took medication for hypothyroidism were three times more likely to develop dementia than those who did not take medication, the study found.

The people who were medicated almost certainly had more severe hypothyroidism than those who weren't medicated, which probably explains the difference.

Tippet18 profile image
Tippet18 in reply to humanbean

Goodness I hope you're right, but it's just a theory, and scary for anyone taking medication!

humanbean profile image
humanbean in reply to Tippet18

I was 100% convinced that I was developing dementia some years ago (I had no diagnosis of any form of thyroid disease at the time - I'd only been told that my thyroid was "borderline underactive") my memory and brain function improved when I started thyroid hormones. I'm not giving them up. Being low in thyroid hormones causes me pain.

mstp profile image
mstp

My hypo Mum had 'dementia' for at least ten years before she died. I believe she was just not medicated for her hypo properly. Interestingly, when a friend who developed early onset Alzheimers, which was passed on genetically, first went to the doc all his thyroid results were nil so, very alarmed for him, they quickly put him on thyroid meds. About a year later his Alzheimers was diagnosed. Looks like there is some kind of link.

SlowDragon profile image
SlowDragonAdministrator in reply to mstp

Considering how many members on levothyroxine are left woefully under medicated I would be very suspicious that thyroid levels were not correct

bikebabe profile image
bikebabe in reply to SlowDragon

I think there’s a lot of unknowns with that research and a need for more specificity about subjects and their medical history/ hormone levels ie subtle variations in medication type. People being treated for hypothyroidism had higher levels of dementia.

Astridnova profile image
Astridnova in reply to SlowDragon

As a psychiatric nurse for years, I could not help but notice how many of our patients were on thyroxine. This was never remarked upon by the medical staff, which I think was a case of ignoring the obvious. My mother died with severe dementia which was contributed to by several causes, including untreated hypothyroidism. She improved somewhat with dessicated pork thyroid (NDT), but was beyond much help. So many of the other people in the nursing home were on thyroxine. The nurses there could never remember the name of my mother's medication; they used to call it thyroxine (T4) but it was, of course, a combination of T4 and T3. I recently attended a gynecologist who noted that my GP was prescribing me NDT. He exclaimed at length at how courageous my GP is. He added that he frequently refers pregnant women to my GP because he can see that they are not benefiting from thyroxine.

SlowDragon profile image
SlowDragonAdministrator in reply to Astridnova

And virtually none of those patients will have been on T3 as well levothyroxine

The brain needs constant, good levels of T3

Conversion of Ft4 to Ft3 gets worse as we get older, especially if not physically active

bikebabe profile image
bikebabe in reply to Astridnova

So sorry to hear about your mum. It’s distressing to be aware of such poor treatment. I wish you well for your own health and well-being. I feel very privileged to be alive. I was a medical ‘cretin’ for first 4 yrs of my life despite a large goitre. Luckily the family GP happened to go to a talk in London where pendreds was mentioned in passing and I became a Guinea pig. I do wonder if too many institutionalised people of my age in fact might have had wholly reversible learning disabilities with thyroid treatment . I studied up to phd level.

Astridnova profile image
Astridnova in reply to bikebabe

Golly! That's amazing! I'm so glad you survived and thrived. I had not heard of Pendred syndrome. You have now set me on a hunt for lots more info. :-)

Astridnova profile image
Astridnova in reply to bikebabe

Also, what hormone treatment were you given, and did your hearing and balance improve, if I may ask.

bikebabe profile image
bikebabe in reply to Astridnova

Sorry for delay - when diagnosed aged 4.5 yrs, they increased thyroxine until i was on 300 mcg (yep!) for pretty much 20 years. It was only tested when pregnant aged 35 yrs having been discharged from middlesex aged 21 years and was reduced to ?200/250. Its gone a bit haywire since reaching menopause aged 50 yrs and dose slowly reduced to 100mcg pending outcome of endocrinology consults. During childhood test I had delayed bone growth and all the other symptoms of juvenile hypothyroidism until it evened out aged 7-8yrs. The hearing loss was present during childhood but was not given hearing aids until aged 23 yrs and it has deteriorated gradually from 50s onwards. Balance never really improved but thats because Pendreds means you have one less cochlear twist in each ear with loss of all those vital hair cells.

Astridnova profile image
Astridnova in reply to bikebabe

You sound as if you are functioning well. Are you able to convert T4 to T3 then?

humanbean profile image
humanbean in reply to bikebabe

I developed mild hearing loss in childhood. It has been getting progressively worse throughout my life. I'm now deaf in one ear and have poor hearing in the other ear. I also had symptoms of hypothyroidism from a very early age.

I'm going to investigate Pendred Syndrome. Thanks for the heads up.

en.wikipedia.org/wiki/Pendr...

I must admit I have multiple possible causes of progressive deafness in my personal history, so this may be a red herring.

shaws profile image
shawsAdministrator in reply to Astridnova

It was unfortunate that your Mother died due to undiagnosed hypothyroidism.

My mother died due to her GP telling her that she no longer needed B12 injections. Both my sister and I thought that was 'good'. Little did we know what the future held for our mother as she developed stomach cancer due to Pernicious Anaemia and to B12 injections being withdrawn.

I have Pernicious Anaemia too, and my GP told me that I can have as many B12 injections as I wish.

The original thyroid hormone replacement in the UK was NDTs (natural dessicated thyroid hormones) but for some unknown reason the BTA withdrew this altogether despite it saving lives since 1892. It contains all of the hormones a healthy thyroid gland would do. They also withdrew T3 for a while but eventually restored it.

Few doctors seem to be aware of clinical symptoms of hypo-thyroidism neither do they know how to treat them.

A comment was made to me by my GP and I told him he was wrong when he stated that T3 converts to T4.

Astridnova profile image
Astridnova in reply to shaws

My other also had B12 deficiency, undiagnosed and untreated until I accessed her blood tests which the doctor had ignored. She also had clostridium difficils and a tooth acbcess. High temperatures caused an initial severe brain injury. Synthetic thyroxine makes a lot of money for the manufacturers, and those it is inadequate for have their symptoms treated with so many other profitable, if useless, medications.

shaws profile image
shawsAdministrator in reply to Astridnova

I have just made my appointment for B12 injection which I have monthly now. My GP said I can have as many as I feel I need.

My mother also had P.A. with an injection every 3 months until her GP told her she needed no more as her blood was fine but that decision caused her to develop stomach cancer and the lack of pain relief towards the end of life was unbearable - for her and for the family.

heathermr profile image
heathermr

I have had my dementia diagnosis for over 17 years. At first I was really ill with dreadful Hypothyroidal symptoms but because my blood results were very odd the Endos had no idea how to treat me,( TSH undetectable, T4 0,) As I went closer to a myoedema coma, my dementia became rapidly worse despite being treated with high levels of t4 (250) and T3 (60). Finally I had had enough and decided to drop all of the T4 treatment. Over the next few months I improved, but also my dementia improved with just T3 treatment. Now my dementia consultant has changed my dementia diagnosis to Hypothyroidal Dementia or Metabolic Dementia which officially says "a dementia caused by mis treatment of Hypothroidal problems". I now know that my Pituitary has failed over the years and does not produce any TSH, hence I do not have any T4 in my body and only T3 will treat my hypothyroidism. As long as I continue to take T3 my dementia is reasonably steady but I still notice my memory is very poor and I am easily confused and stressed. The pituitary failure has probably been caused by a head injury and a really bad chicken pox infection many years ago. I am now receiving treatment for my adrenal system as that too has failed and have recently started growth hormone as that too is not working.

So there is definitely a link between Hypothyroidism and Dementia, and T3 is an important treatment.

Heather

bikebabe profile image
bikebabe in reply to heathermr

Hello HeathermrGosh you do have some pretty big challenges healthwise and I wish you all the very best for your journey back to better health or at the very least, a life that is manageable and has many moments of pure joy. So many factors for you to juggle. The pituitary is in the area where the amygdala is so I think it unsurprising that there is some kind of linkage but takes a better brain then mine to work it all out. Well done and thanks to TUK for trying to progress the knowledge.

Julia

shaws profile image
shawsAdministrator in reply to heathermr

I'm glad you improved on T3.

I, too, had awful palpitations on T4 and the Cardiologist was contemplating putting an implant in my heart 'to see what was going on'.

Just then some T3 was added to T4 and I felt so much better that eventually I took T3 alone and have been for sometime now.

Our brains have the most T3 receptor cells. The following is an excerpt from link below:-

"In thyroid disease and therapy, even when TSH is normalized, we can still be genuinely hypothyroid if we do not have enough T3 getting into our thyroid hormone receptors in cells throughout the body."

Most people know there’s two ways we get T3 into our cells’ nuclei:

From circulating Free T3, and

From circulating Free T4 hormone that is converted into T3 at a variable rate.

However, most doctors are not taught about our cells’ and tissues’ high priority for and dependence upon circulating T3, nor are they taught about the largest factor that can reduce T4’s local variable conversion rate to T3, nor are they taught about the direct correspondence between Free T3 levels and T3 nuclear occupancy rate, which determines hypothyroid or euthyroid status both locally and globally in the body.

The body’s dependence on a baseline of healthy circulating T3 is a principle that Antonio Bianco has emphasized in numerous publications.

thyroidpatients.ca/2019/12/...

Astridnova profile image
Astridnova

Hypothyroidism classically causes cretinism in babies, which is a condition where brain and body development are stunted, and leads to death. In adults untreated hypothyroidism leads to brain injury too, and to physical decline. If not reversed in time, this is dementia. It is a major sign of hypothyroidism; it defines the condition (if untreated).

bikebabe profile image
bikebabe in reply to Astridnova

Cretinism is the combination of hypothyroidism and deafness (to varying degrees).

reader1989 profile image
reader1989

Hi, there indeed exists a connection between hearing loss and dementia. Hearing loss can occur being a side effect of several diseases. I have been suffering from tinnitus, due to which I could feel a difference in my hearing capacity. Then I decided to undergo an online hearing test ( hearingsolutions.ca/Online-... ) that helped me understand that my hearing capacity was gradually reduced, and I could seek help from the ENT. So, in my opinion, if you feel a difference in hearing due to any reason or disease, even dementia, don't hesitate to undergo a hearing test.

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