New website doctors to help faster searches for... - Thyroid UK

Thyroid UK

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New website doctors to help faster searches for rare disease

MaryF profile image
43 Replies

Hi

some on here have other diseases as well as thyroid: Hope this turns out to help with diagnosis:

telegraph.co.uk/technology/...

Mary F

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MaryF
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43 Replies
flatfeet1 profile image
flatfeet1

Typed in my symptoms but it didn't come up with hypo in alist of about 20 diseases !

MaryF profile image
MaryF in reply to flatfeet1

Now there is a surprise - NOT! Mary F x

PinkNinja profile image
PinkNinja in reply to flatfeet1

Me too :D It wasn't until I added "weight gain" that I finally got hypothyroidism and hashimoto's thyroiditis.

SamBonjela profile image
SamBonjela

its completely rubbish, I reckon the research is to see how many hits the site would get after publishing a warning that its only for doctors. I can't imagine any doctor finding this useful to diagnose a rare disease.

RedApple profile image
RedAppleAdministrator in reply to SamBonjela

I wish this had been around a few years ago. Maybe then it would not have taken me over four years to convince the various medics I was referred to, that my strange symptoms were for real. And no, I'm not talking about thyroid disease here.

They could have typed just a couple of words that I used to describe my symptoms into this database and been on the right track in no time. Instead, I had to do all the research myself and then jump through hoops to get an official diagnosis of a rare disorder.

MaryF profile image
MaryF in reply to RedApple

Yes sane here, got there in the end for all five things, but tricky! MF x

SamBonjela profile image
SamBonjela in reply to RedApple

did that work for you? typing in a couple of words I mean - have you tried it?

helvella profile image
helvellaAdministratorThyroid UK in reply to SamBonjela

Worked exactly as I expected for three different sets of disease symptoms. Got the "right" answer each time.

PinkNinja profile image
PinkNinja in reply to helvella

I think the trouble with hypothyroidism is that so many of the symptoms are also symptoms of other things and it just happened that hypothyroidism didn't appear with only 4 of my symptoms. Although, to be fair, it is for rare diseases and hypothyroidism is far from that. I must try some other diseases :)

helvella profile image
helvellaAdministratorThyroid UK in reply to PinkNinja

The three I tried were rare!

PinkNinja profile image
PinkNinja in reply to helvella

Then it appears to be doing its job :)

It found SLE, pernicious anaemia (although not rare) and one other (which I can't remember due to crazy tiredness), which I thought was quite good for a new tool.

PinkNinja profile image
PinkNinja in reply to helvella

It got Wilson's disease (and I didn't even enter the iris ring thing) and porphyria (no mention of urine colour changes).

PinkNinja profile image
PinkNinja in reply to helvella

Yep. Seems to work quite well for diseases other than thyroid although hypothyroid comes up if you put in quite a few symptoms or just the "right" symptoms.

MaryF profile image
MaryF in reply to SamBonjela

Well who knows.. if it is rubbish.. I am sure they will protest... working for a charity which promotes rare disease, I hope it does end up being useful. M

SamBonjela profile image
SamBonjela in reply to MaryF

they wont protest, this is someone's research project, they just wont use it. I put in 5 classic graves symptoms and it came up with a VERY limited number of studies on each of the symptoms. it didnt tie them together at all and wouldnt be even slightly useful to identify a rare disease, unless you typed in the name of that illness. Any doctor that would even think of using this should be avoided at all costs!!

MaryF profile image
MaryF in reply to SamBonjela

Well luckily I am not a doctor, and use a varied range of resources for rare disease research.

SamBonjela profile image
SamBonjela in reply to MaryF

:rolleyes:

helvella profile image
helvellaAdministratorThyroid UK

I feel that things like this could be very useful. Clearly needs some rough edges smoothed!

E.g. put in symptom - get same disease twice - once with "disease" and again with "Disease" as if the capitalisation made them different!

Many a medical program (and I am thinking House MD as a prime example - fictional!) has almost made a star of the differential diagnosis. The big problem with such a process is making sure you have everything in the list to start with! That is where this function seems to have its potential.

Thanks for posting, Mary.

Rod

MaryF profile image
MaryF in reply to helvella

Hopefully the users will sand it down a bit!!!! MaryF x

PinkNinja profile image
PinkNinja

It is a research project. It is not going to be perfect. By doctors using it and providing feedback there is a possibility that it could become a good and very useful tool.

I put in a three grave's symptoms from a list on a website but Grave's didn't come up for me either. I suppose this is a situation where they would want feedback from a doctor to improve the search.

MaryF profile image
MaryF in reply to PinkNinja

Yes that is what I thought. I tend to have a positive mind set about most things.. it may well get better ,a colleague of mine did put in one our joint diseases and it did come up tenth on the list when she typed in the symptoms.. it will certainly be worth keeping any eye. MF x

PinkNinja profile image
PinkNinja in reply to MaryF

Yes, I put in symptoms of Wilson's disease (minus the giveaway copper iris ring) and porphyria and both came up in the list.

I think maybe one of the problems for thyroid disorders is that the combinations of symptoms are also common for so many other diseases that there is always a chance it is not going to appear in the list of 20.

flatfeet1 profile image
flatfeet1

Good idea, but definitely needs edges shaving off as Rod says.

helvella profile image
helvellaAdministratorThyroid UK

Quite a number of other comments, articles, etc., including an original research paper from the authors.

Dr Google was most instructive as it found an image of the back of an eye like mine. If only the medical profession had used findZebra in 1989 life would have been easier to cope with. I am not alone, there are millions of people like me!

<and quite a few other comments>

guardian.co.uk/lifeandstyle...

MIT Technology Review article

technologyreview.com/view/5...

FindZebra: A search engine for rare diseases

Radu Dragusin, Paula Petcu, Christina Lioma, Birger Larsen, Henrik L. Jrgensen, Ingemar J. Cox, Lars Kai Hansen, Peter Ingwersen, Ole Winther,

DTU Compute, Technical University of Denmark, Denmark

Department of Computer Science, University of Copenhagen, Denmark

Findwise, Copenhagen, Denmark

Information Systems and Interaction Design,

Royal School of Library and Information Science, Copenhagen, Denmark

Department of Clinical Biochemistry, Bispebjerg Hospital, Copenhagen, Denmark

Department of Computer Science, University College London, London, United Kingdom

www0.cs.ucl.ac.uk/staff/ing...

Rod

MaryF profile image
MaryF in reply to helvella

Thanks for this detail. MF x

I typed in four things and hypothyroidism came up, but so did whippets disease...maybe I can have that too, to add to my fibromyaliga, somatoform, anxiety, hypochondria :-)

I think it might be quite useful eventually when tightened up.

MaryF profile image
MaryF in reply to

Yes.. I must have another 'play' with it! Mary F x

well I just in typed 3 to test

cold fatigue dry skin..........bingo Hypothyroid!

saves them admitting they google too! lol!

Mary does that mean I'm just a plain horse and not a Zebra?

(put in 3 of Dad's symptoms too = acromegaly)

nice link - thanks! if only they'd didn't attach such importance to TSH! J :D

MaryF profile image
MaryF in reply to

Well I have come out as mule...MF x

in reply to MaryF

Ah.. a thoroughbred cross, with potential to carry a heavy load, should have guessed! J x

MaryF profile image
MaryF in reply to

Naturally I have a thing about panniers! I wear them daily! MF X

Interesting. It certainly needs a bit of fine tuning, but hopefully it may help in the future. At the moment it just seems to pick out an obvious illness from one of the listed symptoms - e.g. fibromyalgia, chronic fatigue syndrome, which is actually exactly what our GP does at the moment. In my daughter's case I had several tries with a variety of symptoms none of which brought up her now confirmed diagnosis of mold and biotoxicity causing her thyroid problem.

Hope it works for some though. Jane x

MaryF profile image
MaryF in reply to

We have to be our own detectives.. but having the internet is a great leap forward... I used to take me ages to find stuff! Mary F x

Kezzerb profile image
Kezzerb

It is very interesting to think that doctors will be doing exactly what we as thyroid sufferers do on regular basis surfing the web only they will have a replacement for their medical textbook through a medical site. Maybe it won't be long before we can plug our brains in to a computer and get the answers and even a cure ourselves gosh anything is possible. I am beginning to wonder if the world we are living in is real. One thing I do know people are more informed and are taking control of their own health and lives. Perhaps in time we won't need doctors at all.

MaryF profile image
MaryF in reply to Kezzerb

Well they all google anyhow... however so many more papers available to them of course... but maybe eventually it could be another possible tool, depends how simplistic it is. Keep well. Mary F x

in reply to Kezzerb

Wouldn't that be great - like taking the car to the garage and having them plug in a computer to tell them what is making that funny noise under the bonnet! Jane x

Kezzerb profile image
Kezzerb in reply to

If that were the case Janeb I would fail MOT and be written off LOL

RedApple profile image
RedAppleAdministrator in reply to Kezzerb

We might not need them as diagnosticians, but they still hold the purse strings for tests, medications etc :(

Kezzerb profile image
Kezzerb

Mary I love your blogs you are such an interesting character. Don't let anyone say any different bless you Kerry xxx

MaryF profile image
MaryF in reply to Kezzerb

Ta. new one soon. Mary F x

valerie profile image
valerie

hahaha, just put in one symptom and one of the listed diseases was "irritable male syndrome". I always said all my symptoms were down to an infuriating husband......Val

in reply to valerie

that's a new one! oh sorry no it isn't lol! :)

WaryofMDs profile image
WaryofMDs in reply to

Do I have to sign in to something to try this new toy?

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