This Bianco paper discusses the relation between brain fog and hypothyroidism.
Brain Fog in Hypothyroidism: Understanding the Patient’s Perspective
Matthew D. Ettleson, M.D.
Ava Raine
Alice Batistuzzo
Neda Laiteerapong, M.D.
Miriam O. Ribeiro, Ph.D.
Antonio C. Bianco, M.D., Ph.D.
Show all authors
Published:December 07, 2021DOI:doi.org/10.1016/j.eprac.202...
Looks like the outcome from their survey - which I (and I guess many others) took part in.
Afterwards, I emailed Bianco - quite critically, and did get a polite reply. I'll have to search out the exchange!
The full article is behind a pay wall. Brain fog to me is much more than forgetfulness and fatigue. It's an inability to concentrate, poor ability to assimilate new information, poor reasoning skills, etc.
Thankfully, some times are better than others!
I personally haven't found regular exercise helps, but that's hard to quantify....I definitely find a good night's sleep helps and combination therapy has helped enormously.
Strictly gluten free diet often significantly improves brain fog
Yes indeed! Brain fog for me involves a lot more than fatigue and forgetfulness.
For me:
It makes planning and organising difficult.
Involves a weird sort of temporal confusion and 'mis-remembering' (thinking something already happened that hasn't happened yet, then on the day of the event forgetting it and then only remembering the following day that the event happened the day before and that when you thought it had happened you were confused and can't remember why you thought that).
Difficulty making choices and decisions, shopping paralysis.
As you say terrible difficulty in concentration and much shortened concentration time ability.
Not being able to sustain reading beyond a few pages. Reading without comprehension.
Chronic day dreaming.
Not being able to sustain attention on a task and needing frequent breaks during activities like cooking or cleaning
Difficulty writing thoughts and interpreting information and ideas.
Difficulty grasping words, difficulty understanding words people say. Forgetting spelling, dropping words in sentences.
Bad days stuttering and not sustaining long conversations.
Not understanding how several ideas are linked (metaphorically getting the joke waaay late)
No motivation to actively follow up thoughts, ideas or intentions
Social peripheral unawareness.
Reduction in spatial awareness etc etc etc
Sleep helps a bit in that the symptoms are lessened in severity temporarily, but it doesn't cure it at all. As for exercise...in my experience this leads to an eventual worsening. Of course this article was based on people's experiences and everyone is different.
But this to me sounds a lot like articles on Chronic Fatigue or ME or Fibromyalgia where the suggestion ultimately always seems to be that this cohort are doing 'lifestyle' all wrong and must simply sleep more and exercise more and eat more veg and these 'soft' symptoms will all disappear.
It effectively allows health professionals to turn around to patients and tell them their illness isn't based on any underlying disease. I haven't read it due to the paywall so maybe I'm wrong, but it sounds depressingly familiar
Agree....it can be absolutely debilitating!
Been there, got the T-shirt...see my reply below.
You may find these articles of interest
healthrising.org/blog/2019/...
frontiersin.org/articles/10...
Wow DippyDame the resources in that first link look amazing, I know there was a doctor who looked into a link between T3 resistance and Chronic fatigue/Fibromyalgia before - I can't remember his name right now - and those were the only articles I ever found exploring this concept. I will enjoy tucking into all those articles, thanks!
Absolutely. I have all these problems, and my husband quite a few of them. I've never seen them described so well and so comprehensively.🙏
This:
Involves a weird sort of temporal confusion and 'mis-remembering' (thinking something already happened that hasn't happened yet, then on the day of the event forgetting it and then only remembering the following day that the event happened the day before and that when you thought it had happened you were confused and can't remember why you thought that).
Exactly and couldn’t have put it better myself! 🤣
😂😂 I know right?
Hi Alanna012. I read your reply with great interest. May I ask about your stuttering? I have a stammer and I go through periods where for no apparent reason it is much worse than other times. I have always thought there is some link to my hypothyroidism health.
Oh yes it can be worse if thyroid hormones are low or having a bad hypo day. Definitely.
It's interesting because I don't ordinarily suffer with stuttering at all ....unless hormone levels are bad and then I struggle to speak properly and stumble over the same words or keep repeating the beginning sound of a word before managing to get the entire word out. I have to slow down my speech in order to compensate. It's as if there's a disconnect between my brain, thinking and my mouth/voice. I know what I'm trying to say, but there's this delay between thinking about it and executing the word/s properly. So I end up stumbling. It can be quite bad and usually involves mixed up sentence structure as well. My family and the few friends I have now know that if they hear my stuttering, stumbling or mixing up my sentences I am having a particularly bad day. I actually started avoiding going out especially if it involved meeting new people because it was just too hard to try and speak normally AND Listen and process what people were saying and respond appropriately and I felt judgements would be made about me.
You don't realise how much work your brain is doing in listening, processing, interpreting, making an appropriate emotional and intellectual connection, forming a response, and executing it physically in mere seconds, until you are so hypo these processes are slowed down. I also think the autonomic nervous system tends to be off when very hypo, affecting synchronisation of breathing and talking, eating etc which adds to it.
One example which I vividly remember because I felt so awkward afterwards it changed how I dealt with it going forward, was when I was once walking along the park on the way home and met someone from the past, someone who had known me from my son's school, when hypo symptoms weren't as progressed or obvious.
Unfortunately it was a very bad day, and I was desperate to get home and collapse on the sofa and my heart sank as this person cheerily waved and walked alongside me and proceeded to ask how I was and where I was coming from. I came out with some nonsensical sentence which went something like: 'Hey! I'm gggoing, going home. Oh.... how are you?! Wwhere, where are you going to the ffflats you live near me? I was trying to wwalk. Never bump into you bbefore, really good so...... long to see you'
This person lived in some flats which you could see from the kitchen window behind my house. What I had wanted to say was something like: 'Hi, how are you? It's been so long since I've seen you! I was just on my way home after going for a walk. What a surprise bumping into you! Are you on your way home? Are you still living in the flats near me? Good to see you'
I can just remember the look of concern on her face, I can remember a part of me saying 'just make some excuse and walk away' but I couldn't get any excuse out, so I continued trying to make difficult conversation until she took a different path. After that I resolved to be upfront with people going forward. I hated the thought that people might make assumptions about me otherwise.
I eventually developed a strategy of slowing right down and telling people 'Sorry I'm not well and I'm having a bad day and my speech is affected, or could you slow down please'
This has helped a lot.
I've been experimenting with ndt and it's much improved even though I haven't always taken well to a particular brand so a bit of t3 seems to help with speed of mental processing.
Thank you for your very informative and honest reply. I’ve been transitioning back to T4 treatment and now I need to get my ferritin and B12 levels to a good level. It’s a rocky road with headaches and bumpy speech being the main symptoms. I have to look after myself otherwise symptoms deteriorate quickly. Hopefully as I get to optimum treatment over the next year things will settle. Many thanks again for replying. It’s reassuring to know I’m not the only one!
Far from the only one! Yes supplementing with the Bs and working on Ferritin, iron all will help. Hope you see real improvements next year x
Yes. That’s the first time I’ve heard someone else have similar symptoms with speech. It’s usually bad after a busy day. One time it was so bad I tried to get appointment with gp and they told me to go to a and e. When I’m like that it usually has dizziness and I topple to the side - do you have that too? Anyway they checked EVERYTHING at a and e and didn’t find anything. I was like, please just give me some thyroxine.
Yes I get the dizziness, both the internal dizziness and the type that leaves you tottering over. Thanks for highlighting as I failed to mention it. Hope I don't offend you, but the end of your post made me laugh. I can completely relate. 'Please people, just give me some more levo and leave me alone' 😄
me too , with the speech thing. comes on after i've done 'too much' physically ... happens really suddenly .. like halfway round the supermarket, bam .. taking in full sentences instantly becomes too hard .. i become monosyllabic ,and that one syllable isn't usually the right word for what i needed .
I can still walk, and carry the shopping , i can even drive,,, but finding and saying sentences is too hard, describing anything properly is too hard, finding the word for up , down, or sideways is to hard .. so i just point, and say "that" .
I once had to go for a colonoscopy and the preparation meant fasting from the day before and an early morning journey to town ... by the time i got there i could barely speak coherently .. the nursed kept asking me how much i drank , when i had my last drink , ( i hadn't) .. the consultant wasn't happy to give me any sedation due to the state of me ...
If people don't know me, they get really concerned, and start saying "does your doctor know you get like this " ... honestly, sometimes i must look a bit like i'm having a stroke ......... Of course, i've told my doctor this .. i've told several Doctors this ... for all the good it's done .. i don't think any of them think it could possibly be related to thyroid hormone replacement.. it's not on their tiny symptom list and i'm on Levo so my hypothyroidism has been 'treated' dont ya know .... lol.
In my family and at work .. it's a benign condition known as "oh, mum's gone bleurgh, don't worry , she's just tired , carry on without her, she'll be back later"
Once ive had a lie down under a duvet , and a bit of a sleep i can talk properly again.
I'm self employed so i've managed to work round this without much problem for 15 years, but if i'd had a proper job, i have had to pack it in.
I’m so sorry you’ve felt that way. It’s slightly terrifying to read similar symptoms that aren’t going away. I’m struggling with teaching and leading 4 departments at the moment - just clinging to the hope that the right levels of everything will eventually lead to improvements. I hope you find your way. And if you do leave a map 
I trust you can find some hope for your future in knowing that this was over 15yrs when i had been told and largely believed that my hypothyroidism was now 'treated' , and therefore it must be 'something else' ie. ME/CFS. I hadn't found this place and didn't really 'do' internet at all.. so i wasn't really expecting to be able to improve anything ,i though it was 'just me' being crap, so i learned to pace myself, adapt, and live round it. Had i known in 2005 what i now now, i would have had the tools and the knowledge to try and improve things more .. and most importantly, the knowledge that it wasn't just me who had these sort of symptoms with hypothyroidism, would have meant that i kept looking for improvements in thyroid treatment.
It's hard to compare now to then, because i'm now largely retired and so these symptoms rarely happen anymore , probably because i no longer have to do so much physically or mentally, and i'e become happily adapted to my new way of being.
I learned years ago to recognise the early warning signs of this mental crash coming ...and put the power tool down before i cut my finger off, or insist i needed to stop doing something right now and send the plumber away until the day after tomorrow . ( i learned the hard way , by cutting fingers while 'just finishing one last piece of wood', and nailing though pipes that i'd just looked at only seconds before .... now i stop work the instant i feel my brain going slightly slow, and i have no more accidents)
But you are here now ..... so i reckon you've got a much better chance than i had of finding your way to 'fixing yourself'.
Wishing you all the best ... (teaching and managing 4 departments ?... that's terrifying.. i couldn't have done that job even before my thyroid went wonky .. i could just about manage 'anarchic dinner lady' )
I absolutely loved your post. Well done x
Beautifully put.
My brain fog is quite a lot better now that my medication is at a reasonable place and I only do minimal work (and if I don’t do too much exercise). But I do remember when it began at first how I’d at times find myself completely unable to think. Socially and professionally, people used to admire my sharp-mindedness. And it was so debilitating when I lost the ability to reason well or communicate fluently. Especially at crucial moments, like pitching for new bits of business (I’m self employed).
For people who depend on their brains to earn a living, it’s a massive disability.
WOW Those are a lot of symptons that you described very well, and that is a skill to be proud of. You might consider getting a brain MRI (which is what I am doing) to rule out anything too "physically" serious. I take a bit of T3 with my T4 which seems to help. Also my days seem to have their own pattern of being alert and being in a fog. I take my T4 at 4AM and I take small amounts of T3 three times a day. I might try standing on one foot and facing North East when I take my meds. Who knows maybe that would help 
I had a total body magnetic scan years ago, and they found nothing unusual. Your regime sounds interesting, perhaps something I can think of doing if the ndt doesn't work out. I am approaching total fed up stage with all the tweaks. Let me know if the standing on one foot facing NE helps, believe me I'll try it😄
diogenes Alanna012 Thank you both for posting. I found the 'brain fog' - exactly as described by Alanna012 - to be one of the most distressing things about being hypothyroid. This is the first time I have seen it so accurately described and it brought tears to my eyes remembering just how awful it was and how I don't want to return to it. Well done for expressing it so well.
I think it is beholden upon all of us not to call it brain frog - but to describe it much more accurately.
Happy Christmas, everyone.
totally agree. I could not function properly in teaching while my TSH went back up to 6+ , with terrible absences in class, losing the plot of my lesson, not remembering who I was teaching, where I was literally in the school corridors ... I lost all my confidence. Correcting homework and exams became a nightmare and I was not quick minded enough when doing oral exam work ... things improved when my medication increased and TSH came down. I am also better in the evenings from 16h30 ... far more alert. I also had problems with my hearing and my eyesight which again improve with an improved TSH. All this a had terrible impact on my mental health.
Indeed on your point about exercise l. I find I have to be really careful. Even slightly overdoing it, and the brain fog comes back.
Since I was a small child reading has been part of my life.In my 60s I found myself re-reading pages to recall the content
Until eventually, by the time I had reached the bottom of the page, I had no idea what I'd read at the top!
My brain was fog bound!
Reading anything was almost impossible.
I was hypothyroid on 175mcg levothyroxine...my body wasn't responding but I didn't realise that.
Very long story, short,....high dose T3-only very, very slowly improved the situation and I'm enjoying reading again. Albeit with the occasional need to re-read an earlier page.
I began to think I was in serious trouble and nobody had any idea what was going on...my previously "workable" brain no longer worked.
It wasn't glandular hypothyroidism that was the problem although I had been taking levo for 20 years, that didn't help
I was still exhausted, in pain, bloated and overweight and my brain was fog bound and more.
Much reading and support from TUK revealed the problem....it is hypothyroidism but it is cellular hypothyroidism! The endo I saw briefly would not consider any form of thyroid hormone resistance and was adamant I did not need T3.
Had I followed his advice I doubt I'd be writing this rant now.....my body may have given up before I reached my 76 years of age.
I am not that bloated, aching, fog bound person any more. I function reasonably well for one reason only.....a therapeutic dose of T3-only!
To paraphrase the M&S advert, in my case " Brain fog wasn't just any hypothyroidism...it's cellular hypothyroidism!"
How may medics are prepared to get their heads round that!
Huge thanks to all at TUK!
Happy Christmas!
Since I was a small child I struggled to read, and being left handed this was just another struggle at school along with being grossly overweight compared to the other children, and bullied as I didn't fit in, walking around in a boy's shoes and blazer as the girls sizes didn't go anywhere near me.
I excelled at maths, and was the " ideal star pupil too shy and scared to say anything " and I failed the 11 + and my hair fell out around the same time.
Looking back I believe I was undiagnosed dyslexic / hypothyroid from a very early age.
I was born in 1947 just after the World War2 and my father was medically discharged from the army with what I now believe was Graves Disease which I watched burn itself out in him, over a period of years.
I was diagnosed with Graves 4 months after being verbally abused and physically threatened by a man I employed as my assistant manager in 2003 and had RAI thyroid ablation in 2005 :
My thyroid eventually burnt out around 8 years later and I became more unwell mentally, and thought maybe this was early onset dementia :
Being referred to as a conundrum by my doctor I started my own research into my own health issues and am eternally grateful to this amazing forum and Thyroid UK :
I now self medicate with full spectrum thyroid hormone replacement and know that the addition of T3 either as a T3/T4 combo or through NDT, has improved my cognitive function and my dyslexia now not as challenging as it once was.
Thank you Thyroid UK and to all those on this amazing forum - I hate to think where I'd have ended up without the wealth of knowledge and information that is freely shared by forum members for the common good health of us all.
Wishing you all a good Christmas and let's hope the flip side looks somewhat better.
Thinking back to health issues during my childhood and while growing into adulthood - and old age, born 1945- I'm now convinced that I've had a thyroid problem all my life. Medics never took my symptoms seriously!
Sadly I think there are a lot of us around....many not being diagnosed or treated.
TUK saved me from a miserable early end!
An interesting observation. Have you always been sensitive to the temperature? Cold feet, which was always put down to 'poor circulation', even as a child?
Thanks for sharing pennyannie, I'm glad you found some relief and sad it took so long and you had to go digging yourself.
No worries - I actually feel empowered now, especially from my sofa, and more able to fight my corner,
BUT why does it have to be like this ?
All any of us want is to feel better and I found that fighting my corner, before I was self medicating, simply exacerbated my then symptoms and in a vicious circle, the longer I listened to the NHS the more ill I became.
Now I'm not prepared to compromise my health for a TSH which is the totally wrong test anyway.
Well said Dippy Dame! I think a good level of T3 has a lot to do with clear thinking, etc. For me once I went onto an optimised level of ndt plus B12 jabs, gluten free diest my thinking, memory is miles better. Its so frustrating that its taken me 15yrs & only thanks to the the support of others on here to figure it out. In the old days I came very close to loosing my job thanks to the ignorance & lack of action from the Medical fraternity.
Absolutely Dippy Dame! Like you, I am certain I have been Hypothyroid from a small child.I was thin, pale and tired. Weak limbs, so fell over a lot.
My hair was thin and I was always very cold, even in warm weather. It was a family joke. Had Insomnia and a curious but marked over reaction to any vaccinations/inoculations which often ended up with me being taken to hospital. Also had lots of anxiety.
Symptoms got a bit better at puberty for a while but all came back with a rush after second child was born and have been with me in one combination or another ever since. No diagnosis was forthcoming then or for many years, despite querying all these potential Thyroid issues with various G.P 's ....who always dismissed me with offers of anti-depressants and labelled me non-compliant when I said 'no thanks'.
I suspect lots of people may have had similar issues from an early age. It seems to me to be a matter of them joining the dots and being curious about why so many patients don't get better...but clearly this would require medics to start thinking for themselves instead of following plain wrong or out of date protocols!
I was doing a course on autism and realised that it’s executive function that is impaired when hypothyroid. Working memory too.
At worst word finding issues too.
Yes completely, apparently EF starts slowing down in your thirties and your brain starts making alternative routes or connections to compensate as a natural process of aging, but being hypo in itself seems to really impact EF or slow it down. Your course sounds really interesting!
Anyone find Brain Fog significantly worse 8n winter?
How can you be sure that it's all thyroid related? After all, the symptoms presented here could be the result of all kinds of conditions not necessarily related to the thyroid, isn't this one of the reasons why it's so difficult to treat and why the medical 'profession' avoids it like the plague? Brain fog? Yes, I've experienced it but can only really describe it immediately after I 'reappear' in the real world. It's like waking up or like waking up from a dream. When I'm in it, everything appears 'normal'.
The first time it happened was immediately after being put on levothyroxine and it lasted for about 3 years. The second was quite recently, and quite severe really as the Levo stopped working completely (or my thyroid deteriorated some more), increasing the dose brought me back to earth but all the other symptoms remain as they have done for 13 years.
How can you be sure that it's all thyroid related?
I can only speak for myself but it was through a decades long process of much reading, elimination and trial and error culminating in support from knowledgeable and experienced members here.
Not all symptoms disappear, some do, some reduce and others may remain.
I've experienced all three and I have no doubt that long term, low cellular T3 has been responsible.
I guess others might answer that question differently....we are all different.
Mine improved when I went on to combination therapy, so yes hypothyroid related for me. Probably cellular hypothyroidism as mentioned above as I have a faulty gene which causes poor conversion from T4 to T3.
I was listening to a programme on BBC Radio 4 Wednesday, All in the Mind. This episode was about fish oil, depression and inflammation which affects the brain. It made me think about my Hashimotos in terms of inflammation and brain fog, low mood. I found it to be very interesting and may be of interest to you guys suffering brain fog too.
Someone here suggested gluten free alleviates the symptoms and I think that is because gluten causes inflammation. Also to consider is how low oestrogen causes histamine intolerance which also causes inflammation, plus many other symptoms which are similar with Hashimotos. I've personally seen a significant improvement in symptoms I associated with Hashimotos since starting a low dose of HRT. I'm perimenopause not menopausal.
I’ve been hypothyroid (Hashimoto’s) for several years. My doctor prescribed Levothyroxine and I was fine for the first 3 years. Then something changed and I experienced brain fog for the first time. I’m in my 60’s and fearful of developing dementia. My parents both had it but not until they were older. Then I found the link to my TSH. When it was high I got the brain fog. That is my #1 symptom when I need a higher dose of Levothyroxine. Thankfully my doctor is willing to test my levels every 2 months.
"Brain Fog in Hypothyroidism: Understanding the Patient’s Perspective"
Update .. it seems this article is no longer behind a paywall. the link now goes to full text.
helvella "Looks like the outcome from their survey - which I (and I guess many others) took part in.Afterwards, I emailed Bianco - quite critically, and did get a polite reply. I'll have to search out the exchange!"
did you ever find Bianco's reply ?
I also seem to remember there was a post on here discussing our responses/opinions on the survey at the time, but i haven't found it yet.
Yes!
Dear <helvella>,
Thank you for your thoughtful review and comments on the survey.
The information you provided is indeed very useful.
Since there is nothing published on the subject, we created the survey based on what we learned from our own patients.
Of course, you have a slightly different perspective which is very valuable to us.
Our hope is that by asking questions and publishing on the subject, we will bring awareness to this condition and bring more investigators into the problem.
Once again, thank you for your feedback.
Sincerely,
Antonio Bianco, MD, PhD
I encourage members to make contact with people in order to explain their individual experiences, their individual views. As well as making any points such as using TSH everywhere rather than FT4 and FT3.
Well i've read it now, and tried to be open minded ... but i'm not overly happy with it. As i feared they would , they place a lot of emphasis on how many patients reported they had brain fog Before their diagnosis of hypothyroidism (about 50%) and go on to (predictably) suggest this could mean their brain fog is not caused by their hypothyroid state..
That would be fine if it was presented in a balanced way,..... of course for some people that may be the case... but any idiot can see that it is equally likely that many would be suffering symptoms related to hypothyroidism for a very long time before they finally got a diagnosis... nobody did my bloods for 4 yrs after i had a baby and became permanently autoimmune hypo... so of course i had brain fog 'before diagnosis'... because i was almost certainly 'subclinical' hypothyroid for 4 yrs before diagnosis.... Doh!
But as i feared, they barely mention this very obvious possibility of 'delayed diagnosis' ... first they write a big paragraph pointing the finger at all the usual suspects .. POTS /CFS/Long covid /aging/ menopause,..... and then go on to put this:
"Alternatively, the presence of brain fog before and after the diagnosis and treatment of hypothyroidism may signify inadequacy of thyroid hormone replacement to restore euthyroidism. As mentioned earlier, this can be due to undertreatment, coinciding with an elevated TSH level. In a patient treated for hypothyroidism presenting with hypothyroid symptoms, such as brain fog, the standard of care would be to assess thyroid function (TSH, free T4) and adjust treatment according to the thyroid function abnormality. However, the presence of symptoms with normal thyroid function tests (and no other obvious cause for symptoms) can be a challenging situation for both the patient and physician..."
Which is not very insightful for a brand new paper from Bianco , given all the recent research we have seen showing TSH 'normal' theory is not all it was cracked up to be.
The other thing that bothers me... they didn't have the insight to include any specific questions on it ... but the 'open text' responses gave them a VERY significant indication that "LANGUAGE/memory" difficulties were one of the largest subgroups found in their analysis of the open test responses. (Table 4 ~see 'subgroup classification' language/ memory~ 412 responses )
... and yet despite noting this in the results ... LANGUAGE gets no mention in the Discussion or Conclusion ...... instead they choose to highlight "Patient/ Doctor relationships" and how the study design has limitations meaning most participants 'had regular access to hypothyroidism related websites' and that there was no way to confirm their diagnosis of hypothyroidism or identify co-morbid conditions .
Mmmm..... could do better, methinks.
Brain fog
Brain Fog.
Brain fog, when does it get better?
Brain fog in the morning 
