Would any of you like to share where you got all your knowledge from please? Some of you sound like you are medical professionals with the amount and great detail of the information you share, and I would really like to read the information for myself - but my google searches don't reveal anything like the detail and other 'lived information' you share.
I've been on my 'starter dose' of 10mcg T3 for a couple of months now, and after initially feeling fantastic I am now having a back-slide. I still feel much better than I did before, but knowing how I could feel compared to today I know there's room for improvement. I just wish I understood the ins & outs of it all better. Knowledge is power and all that!
If anyone has any good books or articles, advice on how they came about their knowledge (or even info on google keywords) about the mechanics of how it all relates to everything else in the body I would really appreciate it.
Wishing you all a good evening! 😊
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Ozziemum
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I've got my first post-T3 bloods tomorrow so I can post results then. I've been diagnosed Hashi for 12 years by antibody tests but nobody ever listened to the fact that Levo did less than nothing for me. I finally went private in Feb and was seen by the very nice man who will be my 4th NHS Cons when I get far enough up the waiting list who decided that I'd been messed about long enough & it was time to try T3. I've been reading this forum and making so many notes (and printing off enough stuff to get my SO very annoyed sometimes!) I just wondered if there was anywhere the info was all written down in if not one place, a series of places so that I could read it. I'm not too good with reading from computers and I do like to make notes!
Thanks for those test links. I will also be doing a baseline set of bloods so that I can keep my eye on it for myself. I sometimes get results from my GP but they don't like to be too helpful...
You could start with a book on hypothyroisism from a pharmacy which would provide the basics. But you may feel this doesn’t fully reflect your experience? You could look at books by Paul Robinson which are very detailed, perhaps more than you’d want
This is a vast subject, and you really won't get all you want to know in one place. I've been reading for 22 years and it would be impossible to list all my sources, but I'll tell you what I can:
I started with Mary Shomon's book 'Living Well with Hypothyroidism'. Which gave me a good grounding. It also alerted me to the existance of thyroid forums, so I joined hers. I learnt a lot, there. When I felt I'd learnt as much as I could there, I went on to other forums, to see if they offered additional information. But, most of them were abysmal - especially the Facebook forums. I investigated StopTheThyroidMadness, but soon realised there was a lot of misinformation or information that wasn't up-to-date on there.
I went on to read Dr Broda Barnes book - I think it's called 'Hypothyroidism: The Unexpected Illness' or something like that. And, all the while, I was researching things that didn't make sense to me, reading many, many articles, and slowly learning to separate the wheat from the chaff.
I don't know what level of understanding you have of thyroid, but if you understand the technicalities, you might be interested to peruse the papers linked to on diogenes page:
Thank you greygoose, I really appreciate those tips. I'm probably a 'knowledgeable beginner' having been in the medical field for 33 years but not specifically thyroid. I can save your life if you're upside-down in a ditch somewhere but feedback loops and the whys & wherefores of what to do and what not to do are new to me and I've got a great need to know more!
It will come with time. Nowhere are you going to find everything all in one place - that book hasn't been written yet. And if it were written, you probably wouldn't be able to lift it!
To try to help, I have written what I call my Vade Mecum. Appendix A is a considerable number of links to information around the internet. Lots and lots!
My document clearly doesn't have all the answers - that isn't its aim. It does try to point you as to where you can find out much more.
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information.
And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again.
In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.
If there is anything you'd like me to add, let me know.
I'd hope we don't sound like medical 'professionals' because most of them don't know much at all about the thyroid!
I am always learning more about the thyroid and its hormones and effects on the body. It began when I was diagnosed with hypothyroidism some years ago, this forum helped point me in the right direction re autoimmunity and vitamin/mineral requirements. From there I have purchased numerous books and read many articles and papers on the subject. I am still struck by how much more there is to understand! It's a huge subject because the thyroid affects so many of the body's systems and there are those 'aha' moments when you realise some symptom or other you've had for years can probably be explained via hypothyroidism.
In the two centuries (or so) of the internal combustion engine, we have seen it go from something that just about worked to unbelievable sophistication.
An early engine could be explained in simple terms. A current day one relies on being designed by computers and considers amazingly sophisticated flows of gases, novel materials, control electronics, feedback loops, etc. Even specialist engineers and scientists find it difficult to keep up across the board.
Humans have been around for, arguably, a few million years. Before that, vertebrates going back over 500 million years, have had some form of thyroid glands. Before them, there was specialised tissue which had some similar functions.
Think how many iterations of thyroid have been "trialled" over that period! Subtle and gross variations will have occurred and, to an amazing extent, fallen by the wayside.
Yet, in so many ways, all mammalian species have far more in common regarding thyroid than differences. The fundamental thyroid system is incredibly stable across species.
Thanks to diogenes, et al. we appear to be closer to understanding the basic control mechanism for thyroid hormone. But we still have far too little understanding of exactly what thyroid hormones do. How they are managed within cells. How metabolites of the main thyroid hormones are managed and what they do. How the hypothalamus, pituitary and thyroid glands themselves respond in terms of enlarging and shrinking depending on the life being lived.
There is so much to know, at so many levels, it is truly amazing.
Yes it really is a fantastic system - and the medical profession practice 'reductionism' on it to the extreme. Imagine reducing all of that to just TSH! 🙀
I really need to have a notebook that I get out whenever I come on here and put everything down in one place. My 'important bit of information' pile of paper is growing to be unmanageable! I'll get there.
"I'd hope we don't sound like medical 'professionals' because most of them don't know much at all about the thyroid!"
Yes, that's a very fair point! Sorry for maligning you all 😬 What I meant was very knowledgeable in a medical field. I've had 12 years experience of being fobbed off and dismissed by people who - even if they didn't know any better when they absolutely should have done - should at least have had the basic human decency to treat me like a person with feelings.
Thanks to all the very generous people here I've learned much, not least how to stand up for myself and get my point across; and finally now someone has listened. It's cost me more than I can afford but it's made a huge difference already, and if it keeps going I can just call it my Christmas and birthday presents to myself for the foreseeable future and be grateful!
I became a little knowledgeable from ThyroidUK, but mostly from this forum. The people on here really are the experts as they have been doing this for many years. Everyday I sit and go through the news feed and pick topics I think are relevant to me ( or not sometimes). I also read the research papers by diogenes this gives really in depth medical stuff the sometimes goes over my head but I get the gist of it 😁. I’ve spent two years reading this forum every morning and learn something new each time.
Yes, that is an excellent website. And yes, you have to spend time to go through the articles. They are not necessarily an easy read but worth the time. thyroidpatients.ca/
Thanks TSH110 (that's a hefty score, I hope it's better by now!) I didn't know you could follow people on here, I'll sort that out. Most helpful, thanks. I've seen diogenes puts up loads of articles and helvellas vade mecum is very comprehensive. As for putting scholar at the end of searches, well that's just brilliant! I'd never have thought of it, so I'm glad I asked 😊
to follow hit the persons avatar in the circle and you will see a blue tab “follow” on their page, just hit it and you’ll get notifications of any posts they put up, it’s really useful. I’ve put a screenshot of your page below so you can see. Oddly it seems you are following two people! You can also send a private message (PM is often used on the forum) by hitting the white message button beside it. As for diogenes his posts are worth their weight in gold
helvella puts up loads of helpful posts and his on line tome is quite something!
Yes it’s much better now, tho doctors don’t agree! I take NDT so my TSH is suppressed. I feel a jolly sight better than I did at 110 🤣🤣🤣
Quick work! I actually feel much better than I did for decades. The NDT stopped my depression completely and helped with a miriad of other lingering symptoms on levo - new woman 🤣🤣🤣
a major source of my own information base is 'me' ...... theoretical answers can only take you so far .. and for everything you learn and understand in theory, you will find someone (often yourself) for whom it didn't apply in practice and their own reaction was opposite to that expected. many of us experience things which are inexplicable according to current understanding , and yet they happen. Thyroid Hormones are extremely individual, understanding this and getting to know yourself first is key to understanding anything.
keep good records of your own going forwards... dates of change of brand, change of dose. make a brief note of how you felt symptom on a more or less weekly basis after any change for the first 12 weeks , and then monthly thereafter. and add your TSh / fT4 /fT3 results to this record when you get them . include any other changes you made to diet ,supplements etc
10 yrs or so of this type of record keeping and self observation will serve you very well when you are further on down the line and trying to optimise your doses when you feel unwell (or prevent the GP buggering it up when you feel well).
all online i'm afraid not in a book.. but for help understanding more technical aspects i find ThyroidPatients.Ca (Canada) an extremely trustworthy site. index of subjects covered~ thyroidpatients.ca/home/sit...
Check out any research papers authored by J. E. M Midgley . (he is also an advisor on here and posts as diogenes )
Also from a historical context this Nobel prize lecture by E.T Kocher from 1909 is very enlightening on the subject of physical symptoms , most of which have be left untaught to todays medics.
Ahhh, I wondered how 'joe public' knew quite so much. Diogenes exposed! 😄
Thank you tattybogle (I know what one of those is too) I've tried to keep more of a record of Sx recently; unfortunately at the start I didn't know enough and still trusted the GPs & Cons who were supposedly acting in my best interests. I now know better!
I can only echo what everyone else said about the sources mentioned to become more knowledgable -- especially this website, which provides the best information of all! I count myself lucky that I came across it, and I credit the knowledgable people on this website with helping me to stop believing GPs who continued hinting that it was all just in my head. But on good books to read in addition, added to all the useful sources already cited (most of which I'd read over the years!) I would add Dr Barry Durrant-Peatfield's 'Your Thyroid and how to keep it healthy.' This book offered me an easily understandable broad overview of what to do and what to avoid, the 'ins and outs' as you describe it.
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Medication changed based on blood results
Levothyroxine and ovulation, plus general knowledge on auto immunes
Saw a Dr today who is very knowledgeable about thyroid and adrenals.
