Brain fog vs dementia: Curious as to how other's... - Thyroid UK

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Brain fog vs dementia

ClevelandGirl profile image
38 Replies

Curious as to how other's feel about brain fog. Do most people have it? What are your symptoms if you do? I was at my Endocrinologist appt today. It was 2nd appt with him. (I saw him last month.) I couldn't remember his name when looking at the directory to find the room number. I finally figured it out, but then when I was there I had to call my primary care doctor. Once again, I couldn't remember the doctor's name. I felt so stupid! My father started showing symptoms of Alzheimer's at 59. Both of my grandfathers also had the disease. I worry that maybe it's not the thyroid that is causing my memory problems. BTW, I was not able to get any lab results today. The power went out and they couldn't access them. 2 hours wasted!

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humanbean profile image
humanbean

I worry about dementia a lot too. I get brain fog. One of the things I find is that certain brain functions have deteriorated and some haven't.

So, for example, I find it hard to follow a recipe efficiently. Although I'm not really depressed I lack motivation for a lot of things. My memory for day to day things seems to be disconnected from normal life. It's as if my memory has become compartmentalised much more than it used to be, and if one particular compartment is open then I forget everything that is in the other compartments. Something has to jog my memory to make me close one compartment and open another. I can't really explain it. Another thing that happens is that actually working out how to start a task is very difficult. So, for example, I find admin, bill paying and filing very difficult to get started.

One thing I have found that helps is making sure my thyroid and nutrients are as close as possible to optimal. I still need to decide what I am going to do about sex hormones. I also have problems with my gut. I have issues with high cortisol which I have to keep on top of.

I find that sleeping well helps a lot - it's just a shame I find it impossible 99 nights out of 100. And eating regularly is also essential. Eating plenty of healthy fats is essential for me too.

Caesard profile image
Caesard in reply to humanbean

Same here! Very similar effects!

In my worst foggy days it used to be an effort to perceive the outside world, needing to focus in order to get details that normally would have automatically "read".

Also, not related to depression too, I can't keep up with what a regular "multitasker" would do in his f..d-up multitasker life :) Actually it is not "can't", it's "won't" but I'm sure if i I would try to keep up I may be able to stay for a sprint but not for a long run.

Exercise helps me clear the mind but overexercise drops me; dieting, spelled starvation, is not a good idea, it tends to send me towards a crash.

Marz profile image
Marz

Do you have optimal levels of B12 as well as T3 ? Low B12 is associated with brain shrinkage .... and there are more receptors for T3 in the brain than any other part of the body.

When watching tennis on TV I do often panic when I cannot remember the detail of an earlier match that is mentioned ..... and there are other situations too.

Try not to worry. Perhaps they could mail you your results. ☺

ClevelandGirl profile image
ClevelandGirl in reply to Marz

I am waiting on the B12. I don't know if the doctor tested for the T3. I can't remember :) Hopefully I will have my results this week. How much B12 do you take?

Marz profile image
Marz in reply to ClevelandGirl

ClevelandGirl - I inject B12 as I do not have a Terminal Ileum where B12 is metabolised - and this was overlooked for over 40 years - hence I live with the consequences ☺ I also take a B12 lozenge from time to time. I love B12 ❤

The T3 test is the ACTIVE thyroid hormone needed in every cell so when low is the cause of so much illness. Google LOW T3 Syndrome and be amazed ! It is the most important test and yet not routinely done. If you believed in conspiracy theories then not testing T3 could be one - as it leads Docs into prescribing loads of drugs for all the symptoms ..... 😊 Dosh to be made !!

b12deficiency.info/signs-an...

Scroll down in the above link to read about the neurological signs of B12 Deficiency. Also look at the videos under the heading FILMS to understand the true seriousness of a B12 Deficiency ....

Caesard profile image
Caesard

I'm exactly on the same page with you, if that's of any relief :)

Yes, I've been introduced to hypothyroid brain fog and cognitive impairment and also have the gene pool to keep me up at night.

My choice is to be aware of the distinct possibility that it may happen, monitor such eventuality for occurrence and move along....I'm not wasting much time on this.

Now, in respect to the hypothyroid induced brain fog, in my it went up and down, correlated (but not a perfect match) with the hormone replacement therapy. After 4 years ears deep into this mess I don't have an explication or a recipe but I'm on the right track on controlling it rather than being controlled by it. Huge learning curve to take on :) There are many factors to it, besides HRT set-up, as far I can perceive it...from seasonality to input/output (diet & exercise) and supplements, but also mental hygiene.

What I think it is important to share with you is that IT IS POSSIBLE to have a relatively normal life on thyroid HRT, I'm not there yet but I've had glimpses of it and I have enough hope and strength to make it happen. Currently working on the patience and discipline :)))

Hypothyroid brain fog is real, brain fog effects and cognitive alteration can be chemically and psychologically improved, don't assume more than you have on your plate, it's probably enough already. I would bet that our messed out, stressful lives have more to do with it than our dangerous gene pools.

childerberry profile image
childerberry

I got brain fog from being on Amiltryptilene and it wasn't until I accidentally ran out one weekend and could not get more fora few days that I realised this. Coming off it made a huge difference. Also, I recently took a course if sublingual B12 + folic acid for 60 days and could not believe how much better and more alert I felt. I do forget the odd thing and take a while to find things in my brain at times, but I put that down to getting older as I am 75. My brain is no longer 'foggy' though.

loretta1106 profile image
loretta1106 in reply to childerberry

Hi. How much b12 do u take? I started 500 mg and now take 1000 (in the USA) & it does make a difference I don't take folic acid. What does it do. Always cautious w supplements as I'm on warfarin and don't know how they interact. I have APS Thanjs

loretta1106 profile image
loretta1106 in reply to loretta1106

Mean thanks🙂

Caesard profile image
Caesard in reply to loretta1106

I am also supplementing with 1000 IU B12 and felt improvement in grogginess and brain fog.

ClevelandGirl profile image
ClevelandGirl in reply to Caesard

How long until you saw improvements?

Caesard profile image
Caesard in reply to ClevelandGirl

2 weeks, but I was going up with the thyroid meds in the same time.

ClevelandGirl profile image
ClevelandGirl in reply to loretta1106

How soon after starting B12 did you notice a difference?

childerberry profile image
childerberry in reply to loretta1106

I bought a small bottle of 60 ml, make is Bovea and it is B12 + Folic Acid. This comes with a pipette in the lid and you take 1 ml equals 1pipette full daily. If your levels are on the low side (see your full bloods count) it improves your mental and physical awareness/ability and I felt the difference at the end of the first week. I bought me next one be, about £21 and I just put in Sublingual Vit B12 supplement. Hope this helps.

loretta1106 profile image
loretta1106 in reply to childerberry

Thank you. Next time I get B12, I'll make sure it has folic acid.

ClevelandGirl profile image
ClevelandGirl in reply to childerberry

How much B12 and folic acid did you take? Did you notice an improvement right away?

shaws profile image
shawsAdministrator in reply to childerberry

It is recommended to have a B12 around 1,000 to prevent neurological damage and or dementia/alzeimers. If we have a homocysteine blood test and it is high, we should be prescribed B12 supplements but I doubt anyone has had their homocysteine level checked.

dang profile image
dang

How old are you (if you don't mind me asking)? I can't say whether or not you'll have dementia, but I'm fairly confident what you're describing is classic thyroid brain fog. Let me give you my experience:

I've always had a bad memory it seems, but before diagnosis of hashi's it got much worse. Not just memory but doing tasks I do on a regular day started to stump me. Basic logic, remembering words, etc, all became difficult. And some times were worse than others. Seems that levo alone made things worse for me, as I wasn't able to get a working dose without other problems, couldn't get my TSH down, my brain fog became heavier. My GP took me seriously, but being uninformed about hashi's went down the route of different drug trials rather than sorting out my thyroid meds. They put my on the highest possible dose of ginkgo which is for Alzheimer's, high dose omega pills, and lots of other stuff I can't even recall because none of it worked!

I gave up and figured this is how it's gonna be from now on. Luckily during this time I found a good Endo due to my conversion issues. He put me on t3, and once my dose was optimized I was shocked, truly shocked to find the brain fog had lifted. Now don't get me wrong I still have brain "farts" from time to time, but in normal conditions like being stressed or over tired, but generally I'm sharp again (for the first time in years). I no longer worry about brain fog at all, whereas before that was my main concern.

I believe that optimizing meds, ensuring they are being well absorbed and utilized, and also supplementing vitamins that are too low are what's really needed to lift brain fog and get the gears spinning again.

I would even imagine that doing so would help to limit your chances of Alzheimer's or dementia in the future (an assumption, I'm no doctor). Do you have FT3 results by any chance? I would bet it's not high enough in the range.

dang profile image
dang in reply to dang

I just took a look of your results from 2 weeks ago. With those results I would expect you to have brain fog. You are still quite under medicated, don't work yourself up too much your symptoms will improve with dose optimization.

ClevelandGirl profile image
ClevelandGirl in reply to dang

Thank you for taking the time to look at my past results. Your input is making me feel better, if not physically, at least emotionally :) After my appointment yesterday, I came home and broke down in front of my 19 year old son (I'm 49 btw) I was so embarrassed. I hate feeling the way I do all the time. I was hoping to learn more at the appointment but when it was basically cancelled because of the power outage, I lost it. And then I just felt guilty for dumping this on my kids. Having support on here is extremely helpful because it's easier to share without feeling like all I am doing is complaining.

dang profile image
dang in reply to ClevelandGirl

I'm glad I could help somewhat and I'm sorry to hear about your struggle I can really relate and I know it isn't fun.

That must have been frustrating to lose your appointment over a power outage, that's like the straw that broke the camel's back I completely understand why you broke down.

I had plenty of breakdowns myself, reading your experience is really reminding me of the time before I was able to stabilize my meds.

You have a bit of a rocky journey to go through and I'm sorry for that. But it seems you already have the right foot forward, asking questions, connecting to others who share your experience and educating yourself. Keep this up and I'm confident you'll get out of this funk. But please also have patience as it can take a while to sort out meds and balance your body's levels again.

Caesard profile image
Caesard in reply to dang

Please, what was your levo dosage with brain fog and what is now with T3 (or T4+T3?) when you're stable, and since when you've switched? Thank you

dang profile image
dang in reply to Caesard

Dosage is very personal, it depends on individual mass and how much activity is present in the thyroid. That having been said I take 100mcg levo and 10mcg t3 at the moment, I've been on this dose for about 3-4 months now. But I have Hashimoto's so I expect I will eventually need an increase.

Before being on this dose I was on 75mcg levo with 5mcg t3, but still symptomatic and my results showed that. Now my FT3 is at the top of the range and I suspect this is the main reason for my improvement. So keep an eye on your FT3 levels, if levo alone isn't raising FT3 you'll likely do better with the addition of t3 in some form.

Caesard profile image
Caesard in reply to dang

I am already on a T4/T3 combo pill, on 150 T4 and 30 T3 but still not satisfied in QoL, I had ups and downs, that;s why I have inquired.

If you feel that this is a good idea you could support sharing of success story on this topic I have started a few minutes ago, actually starting from your comment :)

healthunlocked.com/thyroidu...

dang profile image
dang in reply to Caesard

I understand, it can be difficult to find a stable dosage.

I just looked at your post quickly that's an interesting idea, I've thought of doing a similar post with members who do well on selenium. I will add my information to your topic today :)

Parbrook profile image
Parbrook in reply to Caesard

You may find that you feel better by reducing your T4.

Your 30mcg T3 plus T3 converted from your 150mcg T4 may be resulting in reverse T3 which is the body's defence against absorbing too much T3 (If I understood what i have read on this subject correctly).

I feel my best on 50mcg T4 and 25 or 30mcg T3. Reaching this point involved gradually reducing T4 from 100 to 50mcg while increasing T3 from 20mcg to 25mcg.

However, we are all different!

Caesard profile image
Caesard in reply to Parbrook

That's food for thought; but some times ago I have tried to reduce Levo by 25 mcg and immediately felt worse, but at that point I was taking only 20mcg T3.

But the ideea is interesting, too bad RT3 is not a very reliable test.

Maybe reducing the t4 and increasing with Levo if needed, distributed through the he day. Hmm...that's a route to explore :)

ClevelandGirl profile image
ClevelandGirl

What is the difference?

ClevelandGirl profile image
ClevelandGirl

It's the thyroid from a pig?!?!?

shaws profile image
shawsAdministrator in reply to ClevelandGirl

It is the very original replacement for hypothyroidism as before NDT was introduced we died.

It is usually made from pigs' thyroid glands and there is another non-prescription one made from cows' glands. I shall give you a link about NDT as in the UK the Association has made False Statements about it as they don't want patients to have the option and which was prescribed freely upto the introduction of levothyroxine which is T4 only. NDT contains T4, T3, T2, T1 and calicitonin (of course in very small quantities. The doctor who wrote the following would never prescribe levo, only NDT or T3 for his thyroid hormone resistant patients.

thyroidscience.com/Criticis...

NieuwOndaatje profile image
NieuwOndaatje in reply to shaws

Hi Shaws, I stumbled across this post and very interested in the article as I am seriously considering NDT as an option rather than trying T4/T3 in combination trials. I have suspected Central Hypothyroidism and have been taking Levothyroxine in doses from 75mcg to 175mcg over the past few years with little progress in symptoms. Unfortunately it looks like the link you kindly provided is no longer available to the article about the NDT and T3 protocols and critique. Grateful for any help or assistance you may be able to provide. Many thanks in advance. Slainte!

BlueMundo profile image
BlueMundo

I have Hashi and dementia/Alzheimer's runs on the maternal side of my family. My Grandmother had it and my Uncle is late stage. My mother was diagnosed with Alzheimer's in January. I have had poor memory for so long it's untrue. I have no recollection of some places or experiences my husband talks about I'm 51.

I've got so used to not having access to my memories.

I've been told their is no genetic link in Alzheimer's and therefore no tests as not early onset for my mother. I can't believe that 3 members of my family have it and there's no genetic link.

ClevelandGirl profile image
ClevelandGirl in reply to BlueMundo

There IS a genetic link! Please look at the Alzheimers Association website. It could be very helpful to you. alz.org/alzheimers_disease_...

JOLLYDOLLY profile image
JOLLYDOLLY

In my experience, being on the wrong dose of thyroid medication and or not having B12 supplements can cause brain fog. I am considered on the right doses now.

However, now I am in my 50's and menopausal, I have noticed that I sometimes forget words, they are there, but can't always find them straight away. I do not panic, but try and keep stress free and within a minute or so, they come to me. A bit like forgetting someone's name, I call it "Slightly misfiled" ;)

I think B12 deficiency plays a big part in the dementia side. Nearly all my family have some form of B12 deficiency. Myself, my late father, (we had the jabs) both my daughter and brother have to take supplements. I think my late sister was border line before she passed. Our late mum had dementia, was never tested or diagnosed with B12 deficiency, as far as we know but it has made us wonder if that contributed to her having dementia. I know depression did.

B12 deficiency and thyroid symptoms are quite similar and I think keeping on top of these two are important to us even if you have to take over the counter iron and B12 supplements. If you are being checked for B12 deficiency, always ask for folate and ferritin levels to be checked too as pernicious anaemia goes hand with B12 as well as thyroid conditions.

It is a worry but we have to try our best to make sure we have a healthy diet too, especially if like me, you find it difficult to lose weight.

Now I am not a Carer anymore, because my parents and sister have all passed in the last fifteen months (I was full time carer for my younger sister who passed away suddenly last month), I need to focus on my health now, which did for a while take a back burner. Obviously going through a grieving process has not helped my health recently but I realise for me to move forward I need to up my game with everything. Ironically I had my B12 jab yesterday.

Take care everyone. :)

heathermr profile image
heathermr

I was diagnosed with Dementia 12 years ago, then they said it was probably Alzheimers Disease but since I have managed to sort out my thyroid problems and I am taking a good dose of just T3 medication I am so much better in the brain department. In fact so much so that my diagnosis has now been changed to Hypothyroidal dementia. As long as I keep taking my T3 medication regularly throughout the day I function well and my memory has actually improved. If I forget to take a dose then the symptoms of dementia come back with a vengeance just like the brain fog that people talk about. This hypothyroidal dementia does not progress as long as thryoid issues are sorted out, so its important to get your thyroid medication and supplements right for you. My Endo did not have a clue but I am lucky that my pschogeriatition is pushing hard for me to remain on T3.

Good luck

Heather

Phoenix605 profile image
Phoenix605

I was terrified I had early signs of dementia pre hypo diagnosis. It felt like i had a hole where the answer should be and never felt it was on the tip of my tongue, I have always been bad with names but when you look at a kettle and cant rememer what it's called ...... I also assumed I was menopausal at 46 and had the start of arthritis in one if my thumbs and a foot, I was depressed and struggling to complete one task let alone multi! Work warned I was heading for an action plan due to poor performance. I finally got the courage to go to the GP when I couldnt cope with the hair loss any more and thought I was about to lose my job, I finally couldn't hide any more.......

Fast forward 10 months Levo dose close to optimal, memory improved but still foggy, depression gone, joint issues greatly improved but still a bit niggly still no multi tasking, not menopausal!

I decided to get vits tested after reading posts. Folate not bad, ferritin good, B12 low, vit D dire. Fast forward another 3 months with loading doses of Vit D, strong B12 some folate a decent b-complex and a touch of zinc and selenium (for my hair). Memory greatly improved, joint niggles virtually gone, fog greatly improved, multi tasking not great but much better, signs of little spiky hairs appearing.

There is light at the end if the tunnel but as I found there is a lot of symptom overlap with hypo and deficiencies. I didnt start to feel well untill all my ducks were in a row.

humanbean profile image
humanbean

Pig thyroid got mentioned further up.

Using the thyroid from animals was the very first successful treatment for hypothyroidism, back in the 1890s. First of all sheep was used. Eventually though, it became common practice to use pig thyroid. Cow thyroid is also used in some cases. Many patients refer to animal thyroid tablets as natural dessicated thyroid or NDT and it is their preferred treatment.

Until (roughly) the 1970s NDT was the most common treatment for hypothyroidism, but then gradually more and more people were switched to Levothyroxine. Many people didn't get on with Levo and were very unhappy about the change. In the UK now, many doctors have never heard of NDT and think it is something weird and wonderful, "herbal" and dodgy.

A healthy thyroid produces mostly T4 (the same stuff that is in Levo tablets), and also produces some T3, T2, T1 and calcitonin, although the T2, T1 and calcitonin are in miniscule quantities. NDT contains the same hormones. Levo only contains T4. People on T4 often miss the T3 provided by NDT, and do better if T3 is added to their treatment.

STTM - Stop The Thyroid Madness - is an American website which promotes NDT as the perfect treatment for hypothyroidism.

stopthethyroidmadness.com/

Personally, I use the Site Map to navigate the site :

stopthethyroidmadness.com/s...

If I got on equally well with all thyroid treatments and could choose which one I took I would choose NDT.

Black_puma profile image
Black_puma

I was on NDT until the age of 16 in the 80's got then moved on to synthetic, didn't really have a choice as I didn't know any better then.

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