Dementia meds and levo

[Rowing2]

Hi, my friends mum has been recently diagnosed with dementia and is now taking donepezil 10mg . She has been taking Ezetimibe for cholesterol and levo at 75mcg for years and always took her levo over an hour before breakfast. At the dementia clinic they told her to take all 3 with breakfast, obviously this is wrong, but could this be why she’s feeling sick. Thank you

[greygoose]

I don't know. I don't know anything about dementia meds. But if she 'needs' to take a statin - i.e. her doctors deem her cholesterol too high - then she's probably under-medicated. Which could also be why she's been prescribed dementia meds. 75 mcg is only a small dose. When did she last have her thyroid levels tested?

But, yes, that is wrong - and throws her into a viscious circle - she should not be taking all three together. More than likely it would affect her absorption of levo, making her more hypo, raising her cholesterol and causing more dementia-like symptoms. Sometimes, you have to wonder if they do it deliberately!

[Rowing2 in reply to greygoose]

Hi grey goose. Your super lucky you have no knowledge of dementia. Unfortunately my mum has it that’s why my friend contacted me. Her mum has had scans( I should have mentioned that), so she definitely has dementia in early stages. I will pass on your advice regarding cholesterol and her low dose of levo. Thank you so much for your help.

[greygoose in reply to Rowing2]

You're welcome.

Sorry to hear about your mother, it must be hard. I didn't say I had no knowledge of dementia, I said I have no knowledge of dementia meds, nor how they inter-react with levo.

[Rowing2 in reply to greygoose]

All I meant by having no knowledge was that for me and I’m sure my friend, that would be an absolute blessing, I would love to know nothing about dementia other than what I read, or the medication related to it. I lost my mum really although she’s still with us, years ago, she looks like mum and occasionally has lucid moments, but generally is totally different. It’s very , very sad. Mums medication really works for her, especially now she takes two different things, but I am still going to get her tested for deficiencies as I think this could help her too.

[greygoose in reply to Rowing2]

I'm sure it could. I don't suppose she eats much, does she? And probably has low stomach acid. So, she won't be absorbing much. All nutritional deficiencies cause symptoms of some kind.

[Rowing2 in reply to greygoose]

My mum eats well usually as my husband makes it ( he’s a chef , we and we have a healthy food business, so we’re lucky in that respect). Carers warm it for her and she usually eats most if it and then eats so much when she’s at my house every week. She does however not drink enough water , which is incredibly common in older people, especially with dementia, so we try to monitor this closely otherwise it results in her being dehydrated and her blood pressure dropping, but I’m very grateful for your input. I’m going to arrange blood tests for her just to make sure. She also has an incredibly sweet tooth which we’ve decided at 89 just to let her and hope diabetes isn’t going to catch up with her as she needs some enjoyment and she looooooooves cakes. We have realised that you also tent to loose your taste and smell somewhat and food needs to be visually pleasant for a dementia sufferer. For example mum loves risotto , but would never choose it as if it looks bland to her, she thinks it will taste bland, so colourful food really works.

[greygoose in reply to Rowing2]

It's good that she has a healthy appetite. But, at her age, stomach acid is bound to be low, so extraction of the nutrients from what she eats may not be that good. Which is something doctors ought to bear in mind but...

[Rowing2 in reply to greygoose]

Thank you for your replies, I value your opinion xxxxxx

[greygoose in reply to Rowing2]

You're very welocme.

[Marz in reply to Rowing2]

pernicious-anaemia-society....

2nd video down in the.above link - Professor Smith discusses B12 deficiency and brain shrinkage.

As we age our stomach acid lessens. We need good stomach acid levels to break down proteins to release the B12 molecules in food. Added to that - hypothyroid folk usually have low acid levels. Some/many are incorrectly treated with PPI's which is also disastrous for B12 levels. We need to advocate for ourselves to prevent the onslaught of meds as we age - that could be making matters worse without seeking the root cause.

[shaws Administrator in reply to Marz]

I now get monthly B12 injections instead of 3 monthly as new GP said I could get as many B12 injections as I felt I needed. He also reinstated my wonderful T3.

[Rowing2 in reply to shaws]

Wow, how lucky you are to have such a great GP . Could I ask you what your results were that your GP gave you t3 and b12 injections so I can see if I have any chance with my new GP ( my old one who was after 2 years slightly on board, has left the practice).

[Marz in reply to shaws]

Amazing ! Have not ever heard of such a supportive GP. Can you clone him ?

[Charlie-Farley in reply to greygoose]

Hi greygoose

Didn’t I just see post about doctors getting paid per diagnosis?

What if that payment only requires them to refer and a specialist to confirm? It reasonable to assume the dementia specialist has insufficient knowledge of the effects of medication already being taken for existing conditions and whether those existing conditions are being optimally managed.

This is really concerning ………. Treatment being given on the presumption the GPs are managing thyroid issues correctly. We all know about that don’t we (please note overt sarcasm).

[greygoose in reply to Charlie-Farley]

Yes, you did see that post. And yes, it's very concerning. I have little faith in any so-called 'specialist'.

[SlowDragon Administrator]

High cholesterol suggests she’s under medicated

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Improving her thyroid levels might significantly improve brain function

Levothyroxine must be taken on empty stomach and then nothing apart from water for at least an hour after

75mcg levothyroxine is only one step up from starter dose

She could either take levothyroxine very early morning, or last thing at night

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[SlowDragon Administrator]

Strongly recommend she has FULL Thyroid including thyroid antibodies, and all four vitamins tested

See EXACTLY what’s going on

For full Thyroid evaluation she needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) diagnosed by high thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Gluten intolerance is extremely common with autoimmune thyroid disease, frequently leading to significant brain fog

[Rowing2 in reply to SlowDragon]

Thank you so much fir this I will pass it on

[SlowDragon Administrator in reply to Rowing2]

My mother had “dementia” …..knowing what I know now …this was almost certainly undiagnosed gluten intolerance or coeliac, and highly likely very low/deficient vitamin D, B12, folate, ferritin and quite possibly undiagnosed autoimmune thyroid disease

Come back with new post once you get thyroid and vitamin results

[Rowing2 in reply to SlowDragon]

Gosh that’s really scary………so many people could be diagnosed and be taking dementia meds when they shouldn’t be. Thank you as always your knowledge of this is so appreciated

[greygoose in reply to Rowing2]

Pretty certain a lot of people are!

[humanbean]

Just a general comment on dementia...

Make sure that the lady's vitamin B12 and folate have been tested. Low levels of B12 produce symptoms like those of dementia. Folate is required for the body to make use of B12.

This video shows the effects of a long term B12 deficiency. It is terrifying.

youtube.com/watch?v=QqjyAeO...(Not working as expected?)

Low levels of other nutrients can also affect memory.

The first comment on that video was really shocking :

I plan to watch this to counteract the uniformed and unprofessional medical personnel who are trying to change my diagnosis to "paranoid schizophrenic" for stating my memory loss was due to vitamin deficiency or metabolic dementia.

[StitchFairy]

Dr Malcolm Kendrick (author of the Great Cholesterol Con) discusses the role of B vitamins in dementia. Might be something to pass on to your friend for consideration.

drmalcolmkendrick.org/2021/...

[helvella Administrator]

Today, the Guardian ran this article - specific to Alzheimer's (I think):

Study finds link between Alzheimer’s and circadian clock

Research raises hopes for new therapies that could help tackle disease and symptoms

theguardian.com/society/202...

[nellie237]

I agree that your friend needs to check all her Mum's results. I think that they've probably advised her to take everything together because it will be less likely that something will be missed/taken more than once.

If Mum has dementia it may be better to take them all together, then re-check to see if anything needs adjusting than run the risk.

[Charlie-Farley in reply to nellie237]

Hi nellie237

That will have definitely been the reason, 😊👍

-but some meds are blocked by taking with food or taking together . I can pretty much guarantee the medics who suggested this will not have checked the information provided with each drug to ensure there are no contradictions.

After all, every data sheet I have read for Levothyroxine says at least one hour before eating and on an empty stomach.

[shaws Administrator]

Did this lady have a brain X-ray or was it just symptoms? I know for a fact that dementia can only be confirmed - after death.

bbc.co.uk/news/health-29718618

[Huskyy in reply to shaws]

What do you mean? (The last part)

[Rowing2 in reply to shaws]

Hi there yes she had a scan

[shaws Administrator in reply to Rowing2]

That's good she's had a scan which show some changes in the brain (so I believe as I'm not medically qualified).

The following link might be helpful and this is an excerpt:-

People with symptoms of dementia are given tests to check their mental abilities, such as memory or thinking.

These tests are known as cognitive assessments, and may be done initially by a GP.

There are several different tests. A common one used by GPs is the General Practitioner Assessment of Cognition (GPCOG).

Although these tests cannot diagnose dementia, they may show there are memory difficulties that need further investigation.

Most tests involve a series of pen-and-paper tests and questions, each of which carries a score.

[Noworries105]

Hi,

I personally would take her off donepizil . It increases levels of acetylcholine in the brain which gives the impressions of stopping the decline of brain function. However all it does is cause an accelerated decline in brain function after 1-2 years as the amyloid-beta proteins increase (the sticky plaques in the brain).

And make sure she is not and never going to be on any Anticholinergic medication ——-all medication can have this effect especially if acting on CNS and crossing the Blood brain barrier. In older people, it is fine to have high BP as this is acceptable, the anti-hypertensives do act on the Brain and causes worsening Alzheimer’s, eventually leading to dementia.

Finally, make sure she has good teeth, stays fit as active as possible, and make sure you can take her on holidays and gain as many memories as possible while you still have the chance.

[shaws Administrator in reply to Noworries105]

I think you've given very good advice to a person who is just newly diagnosed and their brain would be spinning, just to take in their diagnosis alone. I think many people would be shocked at first and I doubt anyone would want to believe the diagnosis.

[Lizzab in reply to Noworries105]

My husband has just started on donezipil. He has LBD and Alzheimer's. He took medication for an over active bladder. I presume they were anticholinergic...

I have read elsewhere what you say here in your post.

If I talk to my husband or anyone else for that matter, about why he shouldn't be on donezipil I'll become the wicked witch of the west......

What to do....

[Rowing2]

I truly love this forum. Thank you so much to all of you for taking time out to give me your valued advice. I will pass on the information to my friend. I really was concerned to by some of the information. My mum has had dementia for years that’s why my friend contacted me and I can usually spot a dementia sufferer immediately, but I didn’t with my friends mum, which makes me really question the diagnosis. It’s an awful disease, but luckily my mum is happy in the moment and we fill her days with those moments. she’s nearly 90 and I’m sure her diagnosis is correct, but I will also arrange blood tests for her. Thank you all so much again xxxxxx

[shaws Administrator in reply to Rowing2]

I am sorry your Mum has dementia and I hope it is not too disruptive for her. It must be awful when you want to say something and then it disappears instantly before a statement has been made.

[Rowing2 in reply to shaws]

Thank you so much for your kind words. Mum is really happy. It’s just sad for us as the roles really do reverse and our relationship has changed, I’m just grateful for each day. Caring for her is quite hard sometimes with the physical aspects with my thyroid problems, but we now also have carers which is great. Thank you again. Xxxx

[Lulu2607]

Hi. It does sound odd. My packets of levo say take 30 mins before food and caffeine. Statins are usually recommended at night to be most effective, and some statins state not to be taken same time as levo. Not every one gets on with ezetimibe so that might be what's making your friend's mum sick. I don't know about the other drug but the pharmacist might be good person to check for advice? They're usually very good in advising about drug interactions, timing of meds etc. It might be worth checking, and you could mention the nausea in case it's a side effect of something or the combination that's causing it.

[Roadrunnergreg]

Hi erly dementia diagnosis is often a misdiagnosis of very low B vitamins deficiency leading to high HOMOCYSTEINE this is the cause of the dementia. the low b vitamins can be caused by low stomach acid and digestive enzymes required for B vitamin absorption, another nutrient to build a brain is omega-3 DHA soo to build a brain you need high strength B vitamins and Omega-3 DHA as per Patrick Holford...