Yep - no meds for 5 days, and I'm starting to feel much less anxious and, strangely, more able to concentrate. I have been able to read several pages of 'Stop the Thyroid Madness' I received yesterday morning ... this is almost miraculous in itself.
What is miraculous is that I am understanding the information and beginning to assimilate it, making connections. And instead of being a bit on the OCD spectrum, where I feel I ought not, therefore should not, therefore cannot, read sections in order of pertinence as opposed to the entire book from page one (therefore freeze on the spot, unable to start), I'm having light bulb moments - wish I'd stopped the bl***y meds sooner!
For example, all that the angels - I mean it - on here have told me about T4, T3 etc, is beginning to form a picture:- becoming ill on levothyroxine after hundreds of years of mid-grade chronic stress became 4 years of high-grade acute but continuous stress; TSH levels and T4 levels all "within the normal range", therefore your anxiety and depression are all because you're a nut ... ahem, we mean, because you are under mental stress. Not a damn thought between all the king's "doctor's" and all the king's wo/men for my poor, knackered adrenals. Feeling cold? Stress. Feeling tired and exhausted and weak? Stress. Unable to concentrate? Nutter - er, we mean, you're stressed. Weight gain? Pig - we mean, comfort eater. Can't lose weight? Pig. Sugar cravings? Pig ... er, stress. Going bald? Menopause. And stress.
How come I can now say that my adrenals have to be compromised therefore I am not converting T4 to T3 properly, and that it is as likely as not that the resultant pooling of the T4 in my bloodstream causes not only my TSH levels to drop, but the contradictory symptoms of being hypo, and that's not even considering that high T4 pooling is very likely to cause reverse T3 problems? How come I can say that and not one bl***y doctor has said it, despite spending all our savings and trawling the medical profession and still being ill? Trawling through all these bl***y people who are trained up to the nines to be nothing more than pigeon-holers and warehouse wo/men and pharma-lackies and pushers and arrogant, autocratic, contemptuous, self-aggrandising clods of turf?
Feel better for that! Next on list: 24 hour cortisol test, and rT3:T3 ratio measurement so far.
Love you all.
xx
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Schenks
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Hi - I'm really sorry you are having to go through this. Unfortunately, I've also had a really bad experience with T4 only meds. I also came across thyroid UK and stop the thyroid madness (thankfully). I'm just about to write to various people including all the Drs I've seen over the last 15yrs to broaden their knowledge and request that they do not let it happen to anyone else. I now have a professor who agrees with me but unfortunately my GP surgery unanimously don't! I will also be giving them a copy of the current thyroid UK petition! I just thought you'd like to know you are not alone. Keep going and I hope you continue to improve.x
That's really lovely of you, thank you. What a good idea, to write out your experiences and send them to the doctors you have had contact with. And very generous! Is the professor an endocrinologist?
Yes he is Prof Endo. He is keen on the typical treatment. However, I had the help of Dr P and then when I was much better went to Prof and tried to link in with the NHS (to help with cost of meds). Prof tried to get me back on thyroxine but I had a long list of symptoms that have now disappeared or are much reduced (I'm still not there yet though). He wrote to my GP With his recommendations I.e. NDT and T3 but they have declined to action. I will approach Prof re adrenals etc on my next visit (you never know!) He did listen and was definately aware of thyroid treatment options. He also noted and highlighted in his letter that I'd had v bad treatment re thyroid most of my life (GP diagnose all ailments inc. Obvious chest infections etc as you guessed it stress!). It is enough to bring on stress!
Great piece of writing ,you put into words as if i were telling the story .What meds are u going to go on now ,i have came of levo since sun and started ndt as i am desperate to get better
It's total madness, isn't it, that so many of us are saying the same thing, having the same damnable experience? I have come off NDT (which replaced levo about 18 months ago) as well as T3, which was added on to the levo before I came off it, and which I stayed on without telling the endo at the time because he said that there was "no precedence" to combine NDT and T3 and so he wouldn't endorse the combo.
The reason I have come off all - the NDT also - is that I have worked out that it is the T4 that is causing me problems. I want to clear my system of it as far as possible. I intend to start on T3 - but I am also going to have my adrenals checked through the saliva test, snf that will decide what amounts, what other meds and how long etc.
I have had HUGE help from people on this site and have been guided to learning about the stuff I need to know - I'm sure you have done the same. Good luck and thanks for your interest.
Kid, you're spot on! It feels good!! I am weak - I have been completely disabled for 7 years, so I have b-all muscle tone and a long way to go, and still in pain but this feels like the right track. My arrhythmia has gone from a missed beat + ectopic every 2 - 4 beats to one or two every minute or so, and the air hunger is not quite so bad.
Not sure how long to be off meds, but I remember you were off T3 for 4 weeks; since you had a TT and not a subTT like me, I reckon I can lose the T4 and try to introduce T3 after a month, but I will be reading what I can and will begin to monitor bp, pulse and temperature, so I may start sooner. I can't quite grasp the rest of your regime as you wrote it to me yet, but I am on the way to clearing the brain fogging, so I will be able to read and understand the rest of what you and the others did and get a ball-park for myself, working with the symptoms as they vary. And I'm bookmarking like fury!
I am now quite sure that I have a problem with T4 and the main antagonist is poor cortisol regulation, and I also suspect the rT3 build-up, but that's as far as my poor, bashed brain can assimilate just now. Later on, as my adrenals heal and my systems normalise I suspect I will begin adding in NDT and titrating it against the T3 until I reach the optimum ratio - but I've learned to be patient; it may be some way off yet.
Not bad, though. Watch this space as I get better - if I seem angry now, this is me at 10% or so. When I get better, I'm taking these b****s on. I don't know how, and there's strength in numbers, but I am so b*** angry - I have lost so many years of my life.
But thanks for your support, Clutter - you and all the others.
Love everything you have written and could not agree more with you. I have learnt so very very much about all of those things and learn something new every day. This is really such a complex issue and illness, one of which I have had for nigh on 20 years now. Hypothyroidism is no easy illness to combat, and there are still many many of us out there trying to combat it. I cannot get my Endo to test reverse T3 and as for Adrenals well..... I will never give up as I and all of you on this site only truly know that KNOWLEDGE is power, may we all continue on in our fights for justice and wellness... Good luck to you all.....
Thank you, marmaris - I have read some of the posts you have written before; and each and every post that I have read from all the different sufferers and conquerors, and each and every reply to my own casting about for answers - and not always being able to get my brain around them - has given me the next stepping stone through the mire. Justice? Now, there's a fight - please God one of these days I'm going to be up for it. In time, in time ... Till then, thank you all. And thanks for the patience to answer my often repeated questions because I can't quite get it. Each piece of the puzzle has brought me to the start of this phase. What a site this is!
Yipppee! THIS is the welcomed HOWL of the Thyroid Patient who finally WAKES UP to how badly they have been treated by their Endo, Doc and Shrink if necessary, and since we are all "Crazy" who complain (!) Shrinks are included in this! Not ONE decent Medical Practitioner might ever think THEY could be wrong or their treatment could be outdated! So welcome, friend, to the world of now you can finally get off the merry-go-round of ill treatment, feeling like sh** daily and wishing amongst other things you could just lay down and die! (Many do this, many suffer this badly) and so I say HURRAH! You crossed that bridge and now, like somewhere over the rainbow, you will begin to get the right treatment, realize your health is in your own hands and the right Naturopath or even private doc who has a Functional Medicine interest or Integrative Medicine Degree can and will help! Not all are over the top expensive but there are many who can do it and get the right tests like an Adrenal Spit test, vit and mineral test, hormonal tests and so on and see also Dr. Barry Durrant-Peatfield's book, "Your Thyroid and How to Keep it Healthy" . This and STTM helped me enormously and Paul Robinson's book, "Recovering with T3" which I am doing....recovering with T3 only. Welcome to "had enough", "screw you Endo/Dr. who is rude and condensating" and welcome to getting well finally!
Boy, talk about a shot in the arm! That energy traveled all the way up into my chest - thanks, MSC! I have had Dr P's book for 3 years - couldn't get my head round it. Paul Robinson's book swam before my eyes - all the Ts and numbers and reverseadrenal3,4hypopituitarythyroidisols just did not make comprehensive sentences in my brain. I have been so completely shattered that I am astonished to recognise this as I write!
I have only managed to piece together byte-sized chips of information on this site, and rarely have had the energy after reading and re-reading the bytes to respond. But the patience and the kindness and the perseverance and the encouragement have brought me to a place that you have just captured in words! And to see how you describe where I am at seems to have opened a window to let me catch hold of a draught of the energy from the sheer, bl***y rage.
Here here I will second that and I study each and every day, and self help myself. I also have written Dr Peatfield's book twice and find Paul Robinson very good also. May we all continue on our difficult paths...
One other thing about brain fog..it is also created with all the toxins we have in our environment and especially Mercury, Cadmium and Lead poisoning. I have been listen to the Detox Summit.com which is also free and this is clear brain fog is a certainty or even dementia from this toxic build up. So Chlorella and Spiritualina which costs about £20. for a big bottle in Holland and Barrett (certified organic or I would not use it myself) can help clean up some of these nasty toxins. All natural stuff so you can not over dose on them but take about 6 a day to start with and see if this helps you too. This is one way and there are others. Lead is in lipstick, known fact. Mercury in tuna fish, and all fish and mercury fillings which definitely cause brain and thyroid issues, and finally if you ever smoked or breathed in smoke you have Cadmium in your system. None of these are good for you so taking these will surely help you think clearer. Not bad for a £20. investment. There are many smoothies too but this is a start.
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