We are finally starting to understand brain fog... - Thyroid UK

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We are finally starting to understand brain fog and how to treat it

helvella profile image
helvellaAdministratorThyroid UK
75 Replies

I so wanted to read this article, in full, and make appropriate comments. (Though I have suffered far less an impact than so many here.)

Shame we can only see the first few paragraphs!

We are finally starting to understand brain fog and how to treat it

Brain fog – which encompasses memory problems, lack of mental clarity and an inability to focus – had eluded scientific scrutiny until covid-19 thrust it into the spotlight. Now, we're starting to learn more about what exactly it is and how we can beat it

COURTNEY SHUKIS was looking forward to lunch: she had just recovered from covid-19 and was glad to be meeting her friends again. Before leaving her home in Plano, Texas, she checked the calendar, making a mental note of the restaurant and when to meet. “But instead of going there, I got in my car and drove to a completely different place,” she recalls. “I sat at the table for half an hour, looking at my phone, wondering where everyone was. My brain fog was really bad.”

That wasn’t a one-off. After having covid-19, Shukis had frequent episodes of memory loss. She would forget to make dinner, had trouble finding the words to describe things and got confused about school pick-up times. “I had never had any difficulties with these kinds of things before. It just felt like my brain wasn’t working right.”

Half another paragraph is accessible before it disappears behind a paywall.

newscientist.com/article/mg...

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75 Replies
stiltzski profile image
stiltzski

What a shame we can’t read more…I am suffering from Long Covid and all my symptoms - including brain fog - from before being treated for hypothyroidism are back, despite being optimally medicated. It is soooo depressing. I feel like I have gone back 15 years. I am now a full-time carer to my husband, who has Parkinson’s & Dementia, so don’t post much anymore, but I could definitely do with some energy and to get rid of this pain. If anyone has any ideas, I’d be very grateful to hear them. TIA

Pearlteapot profile image
Pearlteapot

The quoted neuroscientist, dr Brennan has published a book Beating Brain Fog which is on Amazon. The reviews are not very useful but one says she recommends CBT and GET. I’m not sure what GET is. A reviewer with an interest in ME is very negative about this approach. If someone had suggested CBT to help the brain fog I experienced while under medicated on 50mg Levo I would not have taken them seriously.

Alanna012 profile image
Alanna012 in reply to Pearlteapot

GET is Graded Exercise Therapy.

It's basically an approach founded on disbelief that there is really any physical impediment to a person with ME being able to be physically active. They just have to be gradually weaned back into it with a positive attitude. That's my interpretation.

Some do find it useful. But for many it makes their symptoms worse and even sets some people back into being bed bound. Not surprised some would be upset about it.

Edited: here's some interesting articles and letters to the Guardian regarding the controversy of GET and GET in treating M.E. and Long Covid

Nice guidelines on GET dropped:

amp.theguardian.com/society...

Apparently two eminent professors touting GET, get put to rights:

meaction.net/2021/03/15/gra...

google.com/url?sa=t&source=...

This one where the government and DWP funded research into GET with a view to forcing people with M.E to exercise and back into work:

meassociation.org.uk/2018/0...

TSH110 profile image
TSH110 in reply to Alanna012

Well they can GET lost!

Alanna012 profile image
Alanna012 in reply to TSH110

😄

LindaC profile image
LindaC in reply to TSH110

Bunch o' GITS ;-)

Alanna012 profile image
Alanna012 in reply to LindaC

I see what you did there....

Angel_of_the_North profile image
Angel_of_the_North in reply to Alanna012

Yes, a friend of mine was killed by GET. She was told to ignore pain when exercising and just get on with it - died of a twisted gut.

Alanna012 profile image
Alanna012 in reply to Angel_of_the_North

So very sorry, how absolutely awful!

LindaC profile image
LindaC in reply to Angel_of_the_North

Oh my - how dreadful! Many of them are simply idiots, adopting ideas they simply not only don't but can't understand. GET was discredited by one of the Scandinavian countries as far back as 2009. Insufficient energy in the mitochondria cannot be 'gained back' by expending the small amount available. I told them to 'go figure'! Apologies, I've veered into CFS/ME.

TSH110 profile image
TSH110 in reply to Angel_of_the_North

OMG how awful

Regenallotment profile image
Regenallotment in reply to Pearlteapot

CBT? Last year I had 12 weeks on an accelerated program with the most amazing psychotherapist who was retraining. It was awesome for my anxiety and depression but absolutely nothing in that amazing programme would help with my brain fog. I can see how someone who hasn’t experienced either anxiety depression or brain fog and certainly not all 3 together might infer that mental health takes up thought space but peri menopausal or sub clinical hypothyroid symptoms of brain fog for me are so very different. I had a rare week of clarity last week, gone now, it was like having a holiday.

RedApple profile image
RedAppleAdministrator

Tempting to sign up for the free trial to be able read the rest, but I doubt it actually has anything very enlightening in it.

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

That was, in the end, my conclusion. But I would email the author to get a thyroid-patient view represented - at least having read the article in full!

RedApple profile image
RedAppleAdministrator in reply to helvella

Am I the only one to feel somewhat irritated that 'brain fog' has been completely dismissed for so many of us until Covid shoved it right under their noses, to the extent they can no longer pretend we're just a bunch of whining (mostly) females. But it will be interesting to see how things pan out with the 'scientific scrutiny'!

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

That was very much my view as well!

We can be happy enough if there is decent research which helps with explanation and treatments. But incandescently angry that it has, as you say, been not just ignored, but suppressed.

Patients even mentioning it have realised it would have been better not to have said anything.

Possibly the biggest concern is that they find an approach which works in Covid - but not thyroid or other causes. I do not see that there will be a momentum which will carry work on in other areas.

Maybe a working Covid approach will straitjacket thyroid patients even more? Will be treated as for Covid brain fog, and if you don't improve, they'll suggest you never had it, or the cause was Covid (symptomless if they need to explain why you were never ill with it).

Imagine, for Covid brain fog treatment X works well. But for thyroid we need T3 plus (which could even be X). But as Covid brain fog sufferers don't need T3, "There is no evidence that T3 helps with brain fog...".

(Since seeing it yesterday afternoon/evening, I've had several hours for "attitude" to develop. 😡 )

helvella profile image
helvellaAdministratorThyroid UK in reply to helvella

If anyone wants to, feedback on articles should be sent to: letters@newscientist.com

RedApple profile image
RedAppleAdministrator in reply to helvella

I wish I could say you're completely wrong, or just over-reacting. But I have an awful feeling you've hit the nail on the head.

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

Well - I have written to Kayt - the author - via letters@newscientist.com

A long missive.

I said personal things that I do not wish to post here by way of explanation - otherwise I'd have been happy to post the text.

I specifically reference Richard Asher (Myxoedematous Madness), Bianco's brain fog survey/paper, and diogenes (et al.) new paper. As well as a link to this thread.

Over seventy years since the impact of hypothyroidism on the brain and mind exploded onto the scene. And where are we now? "Oh, what's brain fog?", "Your TSH is too low/suppressed", "When TSH is below top of range, all will be fine", "Must be something other than thyroid"...

PS: I actually suggested that diogenes' paper is so profound, so significant, that it deserves a New Scientist article of its own. Even a Thyroid special edition of NS.

RedApple profile image
RedAppleAdministrator in reply to helvella

"It's your age" "This is to be expected as you get older" and similar such dismissive comments, regardless of how old the patient is in actual years.

Thanks! It will be interesting to hear how the author responds to you. I'm sure you'll keep us posted on that.

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

I did mention age!

Alanna012 profile image
Alanna012 in reply to RedApple

Or how long ago she had a baby. It's all 'well you lose your mind when you have a baby, it's normal to be scatty etc etc. Even after the baby is starting school.....

TSH110 profile image
TSH110 in reply to Alanna012

Well they can’t use that one on me! They can always find another nonsensical justification tho,

TSH110 profile image
TSH110 in reply to helvella

Nice one!

TSH110 profile image
TSH110 in reply to RedApple

I suspect there’ll be a total disconnect between covid research in the matter of brain fog and thyroid disorder brain fog. We will get the same old rubbish given by the same old misogynistic luddites clogging up endocrinology and promoting such an unhelpful culture within medicine.

1Cazza profile image
1Cazza in reply to TSH110

You would think that some of these (Dr.s) would stop and think how come so many say but I am still not well on your treatment? Or are they all so scared of the GMC.

golfmargaret profile image
golfmargaret in reply to 1Cazza

Probably scared

TSH110 profile image
TSH110 in reply to 1Cazza

It’s a whole machinery of disinformation. Starting with an incorrect model for understanding of how it all works . TSH is the only metric you need (rubbish) t4 monotherapy is gold standard (rubbish) symptoms are not to be trusted (rubbish) a TSH if 20 is fine if you’re an old codger (rubbish) anywhere in range or even out of the top end is fine (rubbish) combination therapy is a waste of time (rubbish) T3 will give you a heart attack (rubbish) on and on it goes the factory of pure lies. They should all be forced to read diogenes research and be tested on it before being allowed to practice.

1Cazza profile image
1Cazza

I used to do things like put dinner on and forget it was on, burn everything, yet I love cooking. That was when under medicated on levo. am now on natural thyroid and take what I need not what someone else says i need and back to baking, making all sorts of different meals and not forgetting its on. I also used to think I had dementia as I would forget lots of things like the time i left the hose on and it twisted into the door and flooded our home it was like it for hours we had puddles inside. It's terrifying I am sure it is a chemical problem, and not cognitive as some doctors seem to think.

TSH110 profile image
TSH110 in reply to 1Cazza

I quite agree. Mine was at its very worse before thyroid hormone treatment and it only really improved to something acceptable on NDT. For sure mine was down to lack of T3 and in my case NDT wins hands down over CBT any day. I’m sure CBT has it’s place but it’s being suggested for inappropriate situations like ours which is down to a chemical imbalance due to an autoimmune condition (or in my case anyway) and CBT isn’t exactly readily available even then. Sadly NDT is rarely prescribed on the NHS and is becoming harder to come by. It’s a great big mess and utterly scandalous.

Pearlteapot profile image
Pearlteapot in reply to 1Cazza

God knows I have had my share of mental health problems and years of psychotherapy. The brain fog that I had last month was completely different. It was definitely chemical, it felt like gaps in my brain, synapses that weren't connecting. It felt like I imagine dementia would feel. It was terrifying. It was not depression, not in any shape or form.

Alanna012 profile image
Alanna012 in reply to Pearlteapot

You describe the feeling really well!

Batty1 profile image
Batty1 in reply to 1Cazza

Im currently dealing with this phenomenon cooking and forgetting that Im cooking until I smell something burning… maddening

TSH110 profile image
TSH110 in reply to Batty1

My big one is to get all the timings wrong so nothings ready at the right time but I everything is ready at the wrong time. It must be a sequencing malfunction in my brain. Makes for some mightily strange meals

Batty1 profile image
Batty1 in reply to TSH110

Could you imagine forgetting that your cooking and timing issues on top of it … nightmare!

Hedgeree profile image
Hedgeree

Surely there must be someone on the forum who subscribes to New Scientist in some form and is able to tell us what the full article says?

ShatteredofLee profile image
ShatteredofLee in reply to Hedgeree

I’ll check if I can access it through my university library (they subscribe to lots of things)

Hedgeree profile image
Hedgeree in reply to ShatteredofLee

Good plan! 😊

polythenegirl01 profile image
polythenegirl01 in reply to Hedgeree

Well that's what I did, but unfortunately not allowed 🤷‍♀️

Hedgeree profile image
Hedgeree in reply to polythenegirl01

Oh well....at least you tried.

userotc profile image
userotc

Unfortunately I interpret "scientific community is paying much more attention to it" as drugs companies are getting interested......kerching! Personally I believe naturopathic approaches would be best.

helvella profile image
helvellaAdministratorThyroid UK in reply to userotc

Even the freedom to prescribe T3 as needed would be a step in towards a better future.

Marz profile image
Marz

Wish I could post a specific reference - however I have read on more than one occasion about inflammation and in particular gut inflammation affecting brain performance.

So many connections with the gut - including thyroid and the C virus .... our immunity mostly lies within the gut. Inflammation responsible for so many conditions as many of us know first hand 🌻

Lotika profile image
Lotika

I am discovering that sulphite intolerance (I mean, seriously?! It impacts about 1 in 100, apparently) is likely behind some of my brain fog. I can't imagine a medic within the NHS *ever* thinking about looking for that. As usual, for me, it's the allied health professions to the rescue; when the dentist told me to tell my GP about my persistently odd reactions to local anaesthetic, we realised that it was likely the sulphites... Now to convince the NHS as it seems like a sensible thing to have on one's medical record.... !

Hedgeree profile image
Hedgeree in reply to Lotika

I just got told by my gp to stop eating raisins....but I'm sure she was smirking when she said it.

Absolutely no help whatsoever from the doctor when I told them how ill I'd been after eating too much sulphited products. I was also worried about having an anaphylactic type reaction but I wasn't taken seriously at all.

So I did my own research and I know what to avoid now and always read ingredient lists anyway but now even more thorough than before.

helvella profile image
helvellaAdministratorThyroid UK in reply to Hedgeree

No Amazon?

Not shopping site but chocolate bar (for those old enough to remember them). :-)

Hedgeree profile image
Hedgeree in reply to helvella

Oh no! 🤔

Sadly I don't remember them! Either I was a very healthy child and never had one or I'm too 'young' to remember them! 🤣

helvella profile image
helvellaAdministratorThyroid UK in reply to Hedgeree

My mistake - Cadbury's Amazin!

hatads.org.uk/catalogue/rec...

RedApple profile image
RedAppleAdministrator in reply to helvella

helvella 'Cadbury's Amazin!'

I don't remember those either!

Alanna012 profile image
Alanna012 in reply to helvella

The Ad is a testament to how PC we've become😄 I can't imagine it going down well today....it is amazing....

TSH110 profile image
TSH110 in reply to Alanna012

Yes it’s deffo of its time! I loved the hot chocolate drinking chocolate ad as a child:

m.youtube.com/watch?v=uO96g...

Alanna012 profile image
Alanna012 in reply to TSH110

Oh that's great!...Hot chocolate, the drink that's as warm as mink😄

Can you imagine today? It catches the attention though. Most Ads today are so banal...

TSH110 profile image
TSH110 in reply to helvella

I was right!

TSH110 profile image
TSH110 in reply to helvella

Can’t find that one, only the Amazin raisin bar which I suspect is one and the same

Lotika profile image
Lotika in reply to Hedgeree

Literally just had a call with a GP at the local surgery about my reaction to the local anaesthetic and, maaaaaan, I was desperate to tell someone about it, Hedgeree, so I'm pleased you responded! She managed to perform below my expectations, which is pretty impressive, given that my expectations of the medical community are generally lower than a snake's belly by now!

So, she said "tell the dentist to try a different anaesthetic"! Seriously. You couldn't make it up!!! We had a bit of an argument after that as I patiently explained that if I'm lucky enough to make it to my 3 score and 10, the local dentist is unlikely to be the only person who gives me a local anaesthetic, so maybe we need to take it a little more seriously. Her response to this was a food diary and a coeliac test, which is an improvement, but I really don't see why I have to point out their stupidity to get half way decent treatment!

I've just spent the last 30 minutes trying to calm myself down!

golfmargaret profile image
golfmargaret in reply to Lotika

Thank you for raising this point about sulphites in dental local anaesthetics. I have become increasingly aware of feeling unwell after these. I would like to know whether there is an easily accessible alternatives.

Hedgeree profile image
Hedgeree in reply to Lotika

Hi Lotika,

Oh no! I was about to say that was great that the gp rang you about it but not such a helpful response.

Also the fact that you had to argue with them to get any further 'help' is terrible. It does make you feel despairing.

It was pre-covid when I saw my GP about my problems with sulphites. I waited over an hour to see her as there was a delay and lots of other patients before me. I then saw her for probably no more than two minutes and felt really stupid when she appeared to mock my problem. I can understand your frustration.

Hope you feel calmer now?

Batty1 profile image
Batty1 in reply to Hedgeree

Raisin’s?

Hedgeree profile image
Hedgeree in reply to Batty1

Hi Batty1,

Raisins and other dried fruits can be very high in sulphur dioxide as part of the preservation process.

I'd eaten a lot of trail mix and concentrated orange juice and got very sick as I'd accidentally over indulged on preservatives.

Doctor was no help whatsoever.

TSH110 profile image
TSH110 in reply to Hedgeree

I never eat any sulphur preserved fruit the smell alone makes me feel sick.

Hedgeree profile image
Hedgeree in reply to TSH110

I don't eat any sulphited dried fruit now after being so ill. The sulphurous belching was awful but at least it gave me a clue and something to look up online to try and find out what was wrong. I won't go into the rest of my symptoms...very horrible.

TSH110 profile image
TSH110 in reply to Hedgeree

I should be really careful - thanks for alerting me to it

RedApple profile image
RedAppleAdministrator in reply to Lotika

Lotika, 'the dentist told me to tell my GP about my persistently odd reactions to local anaesthetic'

Letter Published: 14 May 2021

Multidisciplinary care

Thyroids and dentistry

For patients with thyroid disease, local anaesthesia with epinephrine is contra-indicated but felypressin is not safer. Levothyroxine has a narrow therapeutic index. Maintaining a biochemical and clinical euthyroid state is complex; careful consideration is needed before using local anaesthetic or any drug.

Read the rest of this letter here nature.com/articles/s41415-...

Lotika profile image
Lotika in reply to RedApple

Great article, RedApple - I am sending it straight to my dentist. That is so helpful, although it is unfortunate that it basically says that no local is safe for us... ugh.

RedApple profile image
RedAppleAdministrator in reply to Lotika

My previous dentist knew all about the anaesthetic issue for thyroid people. But I'm seeing a new one next week, so will be showing him this too in case he's not aware!

Batty1 profile image
Batty1

I wonder if this memory issue comes back to your previous article about covid and thyroid levels.

helvella profile image
helvellaAdministratorThyroid UK in reply to Batty1

Seems perfectly possible.

My hope (and this is very much divorced from expectation) is that the mechanisms by which Covid has its brain fog impacts are seen to be the same, or have obvious parallels to those by which thyroid causes brain fog. Such that there is seen to be an overlap of treatment to the benefit of both groups.

(Possibly needs pointing out that people can be members of either one or both groups. Which might also help in understanding if those researching are sufficiently astute.)

Lotika profile image
Lotika

I thought it was only hypers, not hypos, with the dental anaesthetic, so it's good to know!

eiddew profile image
eiddew

Hi helvella

There are a few accessible reports on WebMD on the topic, signposting to research articles.

webmd.com/lung/news/2022021...

webmd.com/lung/news/2022012...

webmd.com/lung/news/2021102...

And a high profile research paper from Yale & Stanford:

Mild respiratory COVID can cause multi-lineage neural cell and myelin dysregulation

cell.com/cell/fulltext/S009...

A synopsis of the paper for the public:

med.stanford.edu/news/all-n...

Lead authors of the paper:

1. Michelle Monje (Stanford)

2. Akiko Iwasaki (Yale) [med.stanford.edu/news/all-n...]

Dr. Iwasaki, an immunologist, may be the one to reach out for with questions regarding thyroid hormone- / autoimmunity-related brain fog.

Ω

HTH

helvella profile image
helvellaAdministratorThyroid UK in reply to eiddew

Yes - Covid is making a difference. I just pray they don't find "the answer" - which applies to Covid but not thyroid and CFS/ME, etc.

It shouldn't be, but it is down to non-Covid brain fog patients to make sure their existence doesn't get ignored - swamped by Covid.

eiddew profile image
eiddew

Hi All who would like to read the "Lift the Fog" article helvella flagged up.

The discussion is broader than just COVID. Brain inflammation, nutrient and O2 supply to the brain, helpful suggestions of "remedies", etc, are included. Indeed worth a read, even just to catch the names of the scientists thinking about this problem. Some are "local" for the UK members, in Cambridge and Oxford.

By all means, ping the scientists messages, so that brains in this community can get scanned, and data published.

I just scanned the copy of New Scientist in our library. I need to reduce the resolution to fit file size within the 10 MB limit here.

Lifting the fog | New Scientist | 11 June 2022
helvella profile image
helvellaAdministratorThyroid UK in reply to eiddew

Unfortunately, we cannot post complete articles. There's this thing called copyright. :-(

The 10 MB limit (or whatever the number is - I certainly can't remember) will be for a single image. And, for storage and display purposes, it will have been shrunk - possibly by a considerable amount. The image you attached is only barely readable and zooming in just makes it bigger without actually increasing the readability by much.

eiddew profile image
eiddew in reply to helvella

page 1 test

Lifting the fig p 1
helvella profile image
helvellaAdministratorThyroid UK in reply to eiddew

We simply CANNOT post compete articles due to copyright. And New Scientist is very hot on their copyright - especially on recent articles.

I have deleted pages 2, 3 and 4.

This is not the first time on this post, for that reason I shall now have to close this replying.

eiddew profile image
eiddew in reply to helvella

I think these are better. Nicer on the screen if images are downloaded, and opened on another image reader, instead of read direct on web browser.

Shout once you've got them. I can delete them later.

The ability to reply to this post has been turned off.

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