American Thyroid Association "Foggy Brain" Survey

[helvella]

Members of The American Thyroid Association might have received an email inviting them to complete a survey on “foggy brain”.

Afraid I have deep reservations about this.

What is their motivation? All these years and suddenly they produce a survey? To what end? Will they take the results and apply them blindly – into the future saying “In our 2020 foggy brain survey …” Does some pharmaceutical company have a product they are claiming will treat brainfog?

Most hypothyroid patients are treated with just one form of thyroid hormone replacement, Levothyroxine. Few, anywhere, are offered liothyronine, desiccated thyroid or any combination. A bit odd to say "different forms of thyroid hormone replacement therapy".

Why do they use the term “foggy brain”? Yes, I have occasionally seen that. But almost universally patients seem to call it “brainfog”. The terms might seem similar enough for them to be equivalent. In which case, why choose the less commonly used form?

The complaint of brainfog is NOT hard to comprehend and evaluate. If you suffer from it. I suggest that the difficulty practitioners have is because they have never really believed patients.

Filling in this survey in 5 to 10 minutes – maybe that is possible. If you are NOT suffering brainfog. Another demonstration that they do not understand.

Having read the survey, however I try to answer the questions simply does not, cannot, communicate how brainfog affects me.

That this survey was composed under the auspices of A Bianco and the ATA is incredible. I’ll go through a few points:

You have five options as to why you are hypothyroid. Not including being born athyreotic, nor any form of secondary hypothyroidism, effects of other medicines, etc. You might have expected the ATA to allow you to answer that question but there isn’t even an “other” option.

You seem only to be allowed to have brainfog is specific patterns – such as mornings, or evenings. I want to answer that it seems almost entirely random.

What I’d really appreciate is if you would reply here saying how YOU would describe YOUR brainfog.

If there are enough suitable replies, I shall email abianco. But don’t let that stop you from doing that yourselves.

I do not want to influence your decision whether or not to complete the survey. That should be your choice and I can see arguments in both directions.

The email:

Dr. Antonio Bianco and colleagues at the University of Chicago are looking to understand what “foggy brain” is. Many hypothyroid patients that are treated with different forms of thyroid hormone replacement therapy complain of “foggy brain”. Unfortunately, this specific complaint is hard to comprehend and evaluate.

Please complete the following survey to help them improve understanding and treatment of hypothyroidism. By answering the questions below and submitting the survey, you are participating in a research project based at the University of Chicago. Your participation in this research project is completely voluntary. We expect this survey to be completed in 5 to 10 minutes. The survey is anonymous and no personal information will be retained or distributed. Your responses will allow thyroid researchers and clinicians to have an improved understanding of what “foggy brain” is in order to provide better ways to monitor and treat the symptoms of hypothyroidism.

Link to the survey:

docs.google.com/forms/d/1Dh...

Text of the survey:

This is pretty much the actual text of the questions in the survey. I have simplified the layout to be viewable on HealthUnlocked (I hope!) You can always use the link above to visit the actual survey.

Survey to improve the understanding and treatment of hypothyroidism.

Many hypothyroid patients that are treated with different forms of thyroid hormone replacement therapy complain of “foggy brain”. Unfortunately, this specific complaint is hard to comprehend and evaluate. Please complete the following survey to help them improve the understanding and treatment of hypothyroidism. By answering the questions below and submitting the survey, you are participating in a research project based at the University of Chicago. Your participation in this research project is completely voluntary. We expect this survey to be completed in 5 to 10 minutes. The survey is anonymous and no personal information will be retained or distributed. Your responses will allow thyroid researchers and clinicians to have an improved understanding of what “foggy brain” is in order to provide better ways to monitor and treat the symptoms of hypothyroidism.

🟣 Do you have hypothyroidism?

  Yes / No

A few questions about yourself

🟣 How old are you?

   [   ]

🟣 You are:

  ⚪ Female

  ⚪ Male

  ⚪ Prefer not to respond

🟣 Please check the cause of your hypothyroidism.

  ⚪ Hashimoto's disease

  ⚪ After thyroid surgery

  ⚪ after treatment with radioactive iodine

  ⚪ after surgery and treatment with radioactive iodine

  ⚪ unknown

🟣 Have you ever experienced a "foggy brain" despite treatment for hypothyroidism?

  <Never> 1 2 3 4 <All the time>

Timing

🟣 My symptoms of "foggy brain" started:

  ⚪ Before I was diagnosed with hypothyroidism.

  ⚪ Within weeks/months of being diagnosed with hypothyroidism.

  ⚪ Years after I was diagnosed with hypothyroidism.

  ⚪ Unsure

  ⚪ I do not have foggy brain

🟣 My symptoms of "foggy brain" last:

  ⚪ The whole day

  ⚪ Mostly the morning

  ⚪ Mostly the afternoon

  ⚪ Mostly the evening/night

  ⚪ I do not have foggy brain

🟣 How often do you experience the following symptoms related to "foggy brain"?

🟣 Depressed mood?

  <Never>  1 2 3 4  <All the time>

🟣 Low energy, fatigue?

  <Never>  1 2 3 4  <All the time>

🟣 Forgetful?

  <Never>  1 2 3 4  <All the time>

🟣 Sleepy?

  <Never>  1 2 3 4  <All the time>

🟣 Anxious?

  <Never>  1 2 3 4  <All the time>

🟣 Mental confusion?

  <Never>  1 2 3 4  <All the time>

🟣 Difficulty to focus?

  <Never>  1 2 3 4  <All the time>

🟣 Difficulty making decisions?

  <Never>  1 2 3 4  <All the time>

Living with "foggy brain"

🟣 I got used to living with a "foggy brain"

  <Never>  1 2 3 4  <Never>

🟣 Foggy brain negatively affects my life

  <Never>  1 2 3 4  <Never>

What makes your "foggy brain" better or worse?

🟣 Better

[              ]

🟣 Worse

[              ]

🟣 Please comment below if there is anything else you would like us to know regarding "foggy brain" and hypothyroidism.

[              ]

Thank you very much

If you have any questions about this survey, please visit BiancoLab.org or email [e-mail]

[fuchsia-pink]

Agree it seems a very strange survey! The question about causes of hypothyroidism is particularly odd: three out of four "known" options seem to be "following treatment for hyperthyroidism" - which obviously exists but I would have thought isn't numerically that big a number compared with "ordinary" hypos; whereas the idea of being hypo without Hashi's just isn't catered for!

In terms of how my brain fog manifests itself, to my mind, the phrase is apt: when doing brain-intensive things, the "middle bit" [big picture] is fine but the "edges" [fine detail] become blurry. When work is mainly dealing with fine detail, it becomes very obvious. An anecdote: I enjoy sudokus and am generally good at them. With brain fog, I'm slower or make mistakes, so again it is obvious. So for me, it's not about low energy/becoming forgetful/anxiety etc, it's losing mental "sharpness"

In terms of one of the later questions

What makes your "foggy brain" better or worse?

🟣 Better

- liothyronine - ie having free T4 and free T3 towards the top of range

             

🟣 Worse

- removing lio and just being treated with levo so free T3 plummets

I'm happy to PM you if you want more detail

             

[Sybilla14]

I can see depression creeping in... Could it be that the all-rounder antidepressants now also alleviate this mysterious condition that is “foggy brain”?

[shaws Administrator in reply to Sybilla14]

Doctors will happily prescribe anti-d's for patients but certainly not test FT4 or FT3 or prescribe T3 or NDT (now removed in UK through False Statements ).

I don't think Big Pharma would be happy if patients suddenly recovered their health and did not have problems with their thyroid gland any longer.

Dr Lowe did state that levo - through payments to doctors from Big Pharma - became the No.1. prescription (plus I assume the 'extras' prescribed for remaining symptoms).

[Sybilla14 in reply to shaws]

Sadly I have to agree with what you wrote. The more I dig into the Big Pharma the more evidence I come across for the malpractice, over treatment and wrong guidance given to patients, which benefit Big Pharma and its supporters ie those deriving financial benefit from supporting it. This is not just thyroid health but most areas of modern medicine.

[humanbean in reply to Sybilla14]

Anti-depressants make my brain fog worse. And many drugs which doctors love to prescribe to women actually sedate them, rather than helping them. And the results of sedation for me? Brain fog.

[diogenes Remembering]

Bianco and his co-workers have developed a slow-acting T3 analogue which needs to be tested somehow on patients. My thoughts on this is that he would like to have a trial eventually on a particular group of patients. It's well known that the brain requires probably more T3 supply. So I link the foggy brain survey to his T3-analogue use for this very purpose .He's using this as a marker for future investigation I believe.

[tattybogle]

This reminds me of the QOL surveys that i was asked to complete to monitor treatment of cfs/me. There is no way possible in this format to convey how it actually effects you, and it tries to shoehorn responses into a preformed simplistic idea, that worryingly keeps depression and fatigue at the top of the apparent agenda.

To add to your valid points (about 5/ 10 minutes missing the point, the lack of an option for the random times of being affected, or differing forms of thyroid replacement hormone treatment, or all causes of hypothyroidism), i have a couple of point's;

1)If you were to tick 'before diagnosis of hypothyroidism' , would that be used to show that it is not related to hypothyroidism at all ? cynical, i know but you have to be.

2) Since when has anyone mentioned depression , low energy , or anxiety in relation to brain fog i wonder ? I'm pretty sure it won't have been us that mentioned it.

I have to go play chauffeur to a child , but ill add a description of how it actually affects me later.

[tattybogle in reply to tattybogle]

Ok i'm back, and because today i don't have brainfog, i could drive and think at the same time , here are a couple of things i thought of on the way;

1) when i fill up the car at the pump and have a look at the pump number, on a brain fog day i will have forgotten the number by the time i get to the door of the kiosk and have to walk back to check, (sometimes more than once!)

I will also be unable to copy a phone number without doing it one number at a time,and holding a finger on the place where i am (like a child learning to read)

I will have to re read the same half a sentence over and over , before it makes sense and sticks enough to add the next half a sentence on to it. All of this takes so long that i would not attempt to fill in an online anything because it will time out before iv'e finished.

I have just written this fluently and at a fast pace, but on a brain fog day i would not have been able to have these thoughts at all , let alone put them in an order and type them out in a few minutes...... all you would have got would be " think slow"

2) i just drove past a restaurant on the seafront called 'Lubin' which is locally famous for being part of the inspiration for Victoria Wood's 'Two Soups' sketch.

'That's it' i thought....when i have brain fog it is as though all the connections in my brain function are being served by the 'Two Soups' waitress, rather than quick firing neurons or whatever makes a brain work normally.

facebook.com/ClassicComedyU...

3) i do not associate depression or anxiety with brain fog at all.

Possibly, there is an association with low energy /fatigue, in that when i have brain fog i have usually 'overdone it' physically earlier in the day or the day before.

4) things that make it worse;

Missing a dose of Levo will result in brain fog at around 2 pm, which i have learnt is a signal to check if i've taken that mornings dose.

I once took some very low dose amitryptiline antidepressant (for nerve pain), and i agree with humanbean's findings that it created sedation that was equivalent to brain fog.

5) when i'm suffering from brain fog at a medical appointment, which happens occasionally, i will be asked all of the 'drinkers ' questions over and over again , so i must come across as drunk, probably because of the slow speech and long gaps in between words while i try and find a substitute for the word i want, but don't have.

6) it is literally like 'looking though fog'...... there's just nothing there, i will not even know that iv'e forgotten to do yesterday's job list, as i'm now blissfully unaware that there was a jobs list yesterday, i'll remember tomorrow or the next day (when it's too late and i've incurred a late payment penalty)

[shaws Administrator]

I suggest they address the Free T4 and Free T3 levels of patients' who present with 'depression' or brain fog or fibromyalgia etc. and any other 'new diseases' diagnosed since the introduction of levothyroxine.

I find the following is a peculiar sentence:-

" Many hypothyroid patients that are treated with different forms of thyroid hormone replacement therapy complain of “foggy brain”.

I would also ask did the patients trial different options of thyroid hormone replacements, i.e. NDT, T3/T4 or T3 alone or were they on levothyroxine alone?

What was the preference of the patients who trialled/felt improvement in all other 'available options' - and - if not - did they trial options other than levothyroxine.

[Hidden]

Mine seems very mild in comparison so many others but almost every sentence I find I struggle to find the word I want so my speech is peppered with long pauses until I can recall it.

At its worst I would forget what I was talking about mid-sentence. I would forget what someone had said before they'd finished their sentence.

I would have no recollection of doing things. Lighting candles, turning on taps, showering!

Having typed it out it looks like it was all memory function that was impaired.

[humanbean]

"Foggy brain" actually sounds rather demeaning and childish to me, compared to the term brain fog.

I'm probably being over-sensitive though.

[Sybilla14 in reply to humanbean]

Completely agree! Was thinking just the same.

[DippyDame in reply to humanbean]

Agree!

[DippyDame]

This looks like a survey being carried out by a (postgrad) student working with the research team.

I might dare to suggest that the questions posed come from someone with a limited knowledge of thyroid disease.

Nit picking, but out of curiosity, I did an internet search for "foggy brain"....the results returned all referred to brain fog. Not "foggy brain"

Foggy brain does not appear to be a technical term...

Why use it in scientific research?

If they hope to link low -T3 to "foggy brain" why is there no reference to T3

Would questions such as these help gather more information -

Which thyroid replacement do you take?

Do you take T3?

I would expect a researcher in the field to look beyond the basic questions posed, the answers to which don't seem likely, "to help them (patients) improve the understanding and treatment of hypothyroidism"

If Bianco's aim is to find a group of people to participate in future T3- analogue testing then he surely would adopt a more straightforward method.

Just a few thoughts through the fog!

Not surprised you have reservations helvella !

PS I did say to Scrumbler yesterday that I was becoming a crabbit old woman!! This maybe proves it!

[diogenes Remembering]

A more cynical take might be that Bianco has realised the the tide is turning against him and the rest of thyroidologists re thyroid testing/therapy rationalisation and he desperately wants to be the leading dog on the husky team to get the accolade of first to get the meat.

[DippyDame in reply to diogenes]

With this approach it looks as if he may go hungry!

[Hidden]

I can't even answer the first question - "do you have hypothyroidism?"

I simply do not have a thyroid gland!

[shaws Administrator in reply to Hidden]

If you don't have a thyroid gland at all, I think the very least you should be presribed is a T4/T3 or NDT. Keep in mind I'm not medically qualified but on levothyroxine alone I had constant severe palpitations particularly during the night.

I had to 'treat' these myself by wrapping around my neck - in the middle of the night - wet towels I'd kept in the freezer whilst, sipping ice-cold water and breathing slowly.

The cardiologist was on the point of putting a '?' in my heart to try to fathom out what was causing them. By chance, T3 was added to T4 and all palps ceased. Shortly thereafter I took T3 alone and haven't had to go to A&E. Neither did I consult the cardiologist again.

Everyone of us, I believe, can have different effects on prescribed medications, especially if we've no thyroid gland at all. (I do have my thyroid gland).

[2pence]

To have an unknown cause for hypothyroidism actually means that the doctors haven’t bothered to find out why I have hypothyroidism. I think that I probably have a better idea than they do as I’ve been present all my life and even if they read all of my doctors notes I know they won’t get a good idea as having seen them they are very sketchy with many missing.

Brain fog lifted when I started to take T3, even on the cut down tablets. I can now think and write a sensible letter or report without stopping often for days to find that space that allowed me to think clearly and finish what I was doing. It made me feel more like ‘me’. There have been other benefits too that I didn’t expect.

I have a tremor in my right hand which I now live with but when I saw a neurologist I was told that beta blockers would help. After much soul searching I tried them and even with only half the dose they wanted me to take I was turned into a complete moron who kept falling asleep and I put on 5 kilos over four months which I haven’t been able to lose. I then tried their next step up which is Primidone. I took this when I had someone with me and one tablet wiped me out for the day and made me feel unwell. I did try again as the first time had been a very hot day but had the same result so I now won’t take these and the neurology senior consultant has washed his hands of me. I knew that previously I’d tried Tramadol and felt as if I was high and out of it.

I have a note of T3 benefits for me on my phone in case my GP should ask me but I’m not expecting them to. Perhaps I should email it them and request that it goes on my record.

[cwill]

Well...

My brain fog was very severe, began before I was suitably severe for a diagnosis, and involved severe functional problems, with words and numbers, memory and any task.

Eg I could see a written telephone number of normal length but could not remember the numbers, one at a time, in order to dial. A version of word and number blindness. The tests for Alzheimer’s would have pretty much all been failed.

Within 24 hrs of trying NDT my brain started to work more normally. So I am furious that medicine left me for all those years without cognitive faculties. And now a super simplistic survey.

Surely this questionnaire needs more work?

Where do I get to explain that permanent severe life restricting cognitive issues are simply not captured by their closed questions?

A quick and cheap survey that I would be ashamed to be associated with.

[helvella Administrator]

Well, I have at last responded.

Lots of the issue mentioned are included in my response - but brainfog means I am bound to have missed some. (That is meant light-heartedly.)

I encourage, if not filling in the survey, thinking about sending an email with your opinions:

[e-mail]

[tattybogle in reply to helvella]

will do .....unless i forget

[helvella Administrator in reply to tattybogle]

And I have a response from Bianco himself!

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

[tattybogle in reply to helvella]

That was quick...... it will take me three days to remember how to get into my email account .

I suppose you have gained a 'slightly different perspective' from talking to patients on here...... the questions on his survey do make me wonder what kind of patients he's been talking to ......

[Lora7again in reply to helvella]

His name reminds me of a actor I used to have a crush on.