I’ve been pondering on how I was so lucky to get well and on an optimal dose so quickly (relatively quickly).
Factors:
1. Finding Thyroid UK only six months after diagnosis.
2. Acting on their advice
3. Reading lived experience, a thyroid book and some scientific papers AND NHS guidelines. Read, read (and still reading).
4. Calculating my potential therapeutic dose using NHS guidelines (just a guide but useful).
5. Recording my symptoms leaving and coming back with each dose increase.
6. Keeping a spreadsheet with my blood tests normalised to percentages within range.
6. Getting private blood tests and explaining to GPs their validity and how percentages within range are a perfectly legitimate method to compare results.
7. Last two increases actually submitting reports with results (references) and interpretation of results in relation to my symptoms. This was done in advance so doctor could prepare for telecon should they wish.
8. Being prepared to stand my ground and having read round the subject sufficiently to do so.
Not just getting answers to my own situation but reading others posts has undoubtedly equipped me far better than just read a paper or a book alone. It has added so much to my still growing understanding.
Thank you everyone. 🥰👍
Written by
Charlie-Farley
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A truly great list of inspiring actions for those still struggling Charlie-Farley, as it’s only this multi - actional approach that enables us to gain enough knowledge and confidence to self- advocate.
I too read & read (and am still reading) but you are correct in saying luck plays a part, as I did all your actions and was prescribed T3 but had it withdrawn twice. I am pleased your prescription is secure.
I think my biggest influence for recovering wellbeing was joining this forum soon after diagnosis (although under a different avatar then). It’s fascinating to observe the change in advice as knowledge has advanced so much, and this is one of the most successful forums I have known. We really must thank each other 🥰 👍.
I am convinced relatively quick resolution using Levothyroxine at an optimal dose is precisely why I have not become a complicated case.
Systems deteriorate and it’s a loss that cannot always be fully regained. People mismanaged and inadequately medicated for years as their systems deteriorate and their Quality of Life ebbs away. When (if) finally getting properly treated, then not able to get back to the ‘sweet spot’ and having to make do with the ‘best that can be achieved’.
I’m lucky but also passionate and feel driven to do something.
The way you have approached this is admirable, and thank you for listing what you feel has been beneficial so others can follow.
It took far too long for me to get diagnosed due to fixation on ranges and ignoring of symptoms, which became dire....and left me feeling so very ill it ruined my last summer with my husband before he died.
Consultant endocrinologists...even a Professor of endocrinology as well...ignored my symptoms, focused instead only on blood results and left me high and dry, not just for months, but years.
Having joined this forum in 2015 I learned more about my condition.... and am very grateful for the help and support always offered here. It also spurred me to finally ask my GP at the time, what he thought was wrong with me, if he ignored my thyroid blood results..... and he said "We were convinced you are hypothyroid". .... and offered me a trial of levothyroxine.
Well, they were right and the blood tests hadn't picked it up, condemning me to years of needless misery.
When brain fog settles in it's difficult for me to think clearly, so I salute your clear-mindedness.
I am just so sorry it took them so long 1tuppence 😞. This is what spurs us on to stay, to make a difference isn’t it?
How do we infiltrate the impenetrable bastions where the ‘unthink’ is taught to our medical professionals?
TSH reliance has to be responsible for the majority of mismanagement and suffering.
The wonderful tattybogle has collated papers debunking low TSH being problematic- the post is pinned- this will be such a valuable resource for us all going forward.
Thank you for laying your process out Charlie-Farley. I’m finding it really helpful as I’m about to do 6 week bloods for endo who doesn’t like too much dose tweaking or low TSH, so the papers you refer to in tattybogles pinned post would be helpful. I’ve had a look but I’m a a bit stumped as I can’t find how to access these. Could you kindly point me in the right direction. Thank you
Half the battle is learning how to navigate this amazing platform.
So if you go to tattybogle’s low TSH post. Currently it is a pinned post and I for one hope it stays there. It is a living growing document that can be added to but there are quite a few good references already. Tatty has pasted sections of text that is quite pertinent but has also placed a hyperlink (blue writing) for each reference. So if you scroll slowly you will come across an odd line of blue throughout the post.
These are the links to the document you are looking for. Click on the link then you will get a redirect message and click on link again and it will take you to the reference.
From here you can usually download to the computer and some references I have come across in the past even have a print option. I don’t print everything but I do find sometimes a really good paper requires a highlighter and a biro to underline and annotate. I admit it - I’m still old school! 🤣👍
If you want you can do a word search for topics of interest using spy glass, you can save a post that will then sit in your ‘feed’ the green blob top left. You can click on a persons logo - in my case a face with a swearing bar across it 😂.
Make sure you fill in you Bio on your profile (if you haven’t) and add stuff if needed later to keep it relevant. This is where all your posts will sit to any comments you have made.
I like the way you have listed your wellness journey. I did the same thing back in 2015 when my thyroid was removed and I was ill after six months on Levo. I have been well for years now. The only difference, I was living in France so not NHS. I am always telling the people on here ref the list, but the trouble is most people are probably not like us and don't have the self confidence to go against GP and Endos, so stay ill. Sad but True.
This empowers me ,especially as Ive just been diagnosed with clinical anxiety aka General Anxiety Disorder .Ive also read many articles which say that GAD is strongly associated with Hypothyroidsm ..I dont know how to approach my GP through ,as having ben rebuffed by GP and consultant Endochrinologist as well ,they dont like to be told what to do ,di they,? When I went to HUnlocked and got support ( never ever disempowered here thankyou) so on Armout 1.25 grains with my own private M3dicheck obtained blood tracking .GP will not like me going it alone.Im thinking of referring the idea of T3/t4 Therapy to Psych .....any observations ,? Thimking that he might give me a prescription .Does anyone have experience of Psych prescribing thyroxene therapy ?
that is a really good question! You need to copy and paste this as it won’t get the attention it deserves. I’ll be following you to see what comes of discussion. Wow- perhaps sometimes finding a way round rather than through 😊👍 it has to be explored.
You give me hope. I just found this forum, but have been reading the research and advocating for myself for the last 3 months since I was diagnosed. I will look for those guidelines you mention.
I am currently on .75mcg levo and 10mcg lio, but still lots of mucin accumulation in my legs, still have tongue swelling making clear speech difficult.
I hope to, be able to report good results after 6 months, but knowing it's possible is VERY encouraging.
I’m so glad this is giving you a spur. There are no short-cuts sadly. We have to read for our health, but when you can confidently stand your ground in knowledge and you have put it in hard copy (crucial) they find it hard to justify their ill conceived treatment.
Hard copy backed with references and your symptoms and results. 😊👍
My reports are on another post that can be accessed through clicking on my profile.
It's both a challenge and a help that I am a healthcare professional (and former researcher) myself. Until recently, I was as clueless as many of my colleagues.
Yes, thank you, I have and they are slightly above the range because I had been supplementing for several months. That information and other clinical info is now posted in my bio.
😂👍. You’ve actually populated your profile (one of the few). I haven’t read it yet but was long as you have summarised your health status, what thyroid problem you have anything else health-wise, what meds you are on and (if you have them) results with ranges your an A⭐️plus and some. Brill. 😉👍
OMG you poor thing you have and are going through it. 😱
But you have the ‘smarts’ and a helpful MD. It sounds from your bio that you are starting to find your way. I’m going to tag you into another post - it’s Greygoose responding to utilisation of thyroid hormone. Their perspective might be useful to you also. You will be the 2nd person I’ve tagged in tonight! 😂👍
Thanks. I will read it. There is lots I need to relearn, so even though I've much to learn.
Today was (as you say in the UK) a rubbish day, thyroid wise. Very tempted to just add some DTE to my current meds, but as a scientist, I want to do it with my MDs support.
yep stick to the founding tenants in science we have been grounded in, changing only one variable at a time. I appreciate your frustration been there..
I used private blood tests to get to therapeutic dose and will admit to you ONCE I had my results, owing to the time it took to get an appointment with my surgery, I would start the increased dose I had calculated I required. I was in combative mode too as these guys rigidly stuck to a regime of treatment based on some blinding ignorance, not even following the latest NHS guidelines so I needed my wits about me to battle for the next dose! 🤣
Keep records of symptoms as well as blood tests in real time. My month to view, I filled in with just briefest observations on changes and this was powerful evidence with test results when bought together in a very complete picture of my status.
I only change one thing at a time, because that is the only way I k ow what's helping.
As far as keeping notes, I do one better. Since I'm clinician, I take the liberty of sending short faxed updates to my MD about my clinical condition every two weeks or so. Since the faxes have to be put in my chart, the content gets addressed the next time he and I meet (virtually). I provide references on the faxes, so it gives him time to look things up if he wants. He knows me 20 years, so he knows I am very thorough. He checks my math, but I think he assumes I do my homework and the references check out. Thanks for you help.
You are so systematic! Being up on the recording and being able to talk/ discuss on a level is such an advantage (not afforded to all). We cannot be gaslighted. You will get sorted and quickly with your skills set. But this is the rub - for those who don’t. …
If only I had found thyroid U.K. faster it woujd have really helped me out of a massive hole.
I was given BTF details (took one look and thought I don’t like this organisation, and never went there again) by the horrible endo nurse whom I despise to this day for her stupid attitude, cruel comments and the withholding of relevant information that could have helped me . Nursing was the last profession she should have taken up as for endocrinology what sick a joke that was, perhaps she was a psychopath and that’s why she chose it, plenty of poor unfortunates to torture for pleasure.
I was too poorly to deal with a lot of what happened I was completely dire by the time I got a diagnosis, just trying to do the next thing took most of my energy, even stringing a coherent sentence together was difficult. As for being organised and recording health metrics that had gone out the window a long time ago I became too slow and confused to cope with anything as testing. My intellect deserted me I was so stupid it was embarrassing even to me. I’d say really stupid things al the time as it took me so long to process what the other person had said my mouth just blurted out anything long before the penny eventually dropped . I did write a list for the Endo of what I wanted to say avd would struggle through it. He was actually very compassionate and always listened mostly I’d sit there quietly crying like he allowed the space for me to get out all the emotional distress it had caused me. He never commented on it but I could not stop myself and he seemed to be quietly sympathetic to my dreadful plight. I didn’t see him at the end of optimisation, despite complaining bitterly to that awful nurse that I still felt very unwell. Perhaps he’d have given me T3 if I had seen him again, but I will never know.
I have made amends since coming here and recovered my health. There are so many very supportive knowledgeable people with really useful comments/posts including your list above 😉 - thank goodness I actually found them!
I hope I am an example of how it’s still possible to recover and have a good quality of like despite decades of suffering prior to treatment, not just a very lucky anomaly. I was extremely poorly by the time I got a diagnosis. I had 9 months of hell being optimised but still felt dire, then it was two years of suffering on Levothyroxine. Once I started self medicating on NDT my life began to turn around. After two months on it I felt really well again. Perhaps recovery is possible if the right hormone balance is reinstated, despite years of untreated thyroid disorder and inappropriate Thyroid hormone treatment. I am sure my health would be better had I not had thyroid problems, but I feel well, which is a miracle after what I went through with it. It has to be possible for others to achieve, surely.
I agree, the despair I felt when I was at my worst and couldn’t think anything complex. Even making a cup of tea was a 20 minute challenge! My husband stepped in a took me to the GP and very calmly advocated for me even though all he was working off was my symptoms and the information sheet from my levo pill packet. He got me onto 50 µg of levothyroxine and thereafter, I found thyroid UK and started advocating for myself.
You are truly an inspirational person whose suffering was prolonged by medical ignorance (and a psychopath by the sounds of it!).
I’m going to tag someone in to see your response above as I feel it may inspire them also!
Ta! I determined to seek out as much info as I could to try and get well again and I am so glad I did. My relatives with thyroid disorders all felt really well on Levothyroxine, I knew something was not right when I felt anything but. Thyroid U.K. was key in discovering there were other options I could try. Better still one actually did the trick and very rapidly. Our bodies must be very robust indeed. Until all avenues have been exhausted one should never accept ‘it’s as good as it’s going to get’ - the exact words of that wretched thyroid nurse by coincidence and look how wrong she was!
I’m thrilled you got sorted and thrilled you stayed around. I feel a huge debt of gratitude for this forum and so grateful those who have solved things and stay to share their experience. We need to be here. I learn every day.
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