Today is a good day and I am supremely grateful. I cried when I walked the dog this morning for the joy of having a rare good day. This is the second time I have had a good day in 7 months. It is only on a good day that I can begin to express the sheer horror of the bad days, because it is only on a good day that I can see clearly; that am well enough to begin to express how much I struggle for the other 361 days of the year. That is why I am taking the time to write this now. Why is today a good day and why do they come around about 4 times a year? Because that's when I tweak my medication and invariably you get a bounce on day one, two or three, until things begin to settle. I should add that I have those extra 3 good days because my endo only has time to tweak my medication once a year and the other 3 are me taking it into my own hands. I must write quickly, then.
I woke up this morning feeling alert. It wasn't hard to get out of bed. Getting out of bed is usually a supreme chore. I showered and that wasn't hard either; it was actually pleasant. It is not usually pleasant, it is just another thing to get done in my grey world. Truth be told, I often don't shower, because it is too much of an effort and takes too much energy, which is probably better spent on anything else.
I walked the dog, looking forward to our walk, because I had the energy for it. I walked quicker than usual. Instead of being a little annoyed that the dog lost his ball (searching for it is one of his favourite things when he mislays it) I enjoyed watching him enjoy the task of attempting and failing to work out where he'd left it amongst the scrub. There goes another ball!
I got back and rather than being faced with even more brain fog and exhaustion following walking the dog, I had the energy to contemplate starting a task. And it is this one, writing about bad days from the perspective of a good day, for my future self.
Mostly, today I am grateful, but I am traumatised. I am traumatised by the fact that I feel normal about 4 times a year and I'm traumatised because it makes me realise how much I struggle with every single little task for the other 360 days. The brain fog is crippling. If I use too much mental or physical energy, I will be capable of nothing other than staring into space and will face an even worse day tomorrow.
To compound this, some doctors and endocrinologists do not think my condition exists. They think everyone is fine on levothyroxine only or that patients have "high expectations" of treatment. They are worried that T3 can lower TSH, and connect low TSH with a higher associated risk of stroke, osteoparosis or heart attack in the future. Today, I can tell them (they won't listen) that I would choose one single month of feeling like I do today, followed by death, over a hundred years of feeling like I did yesterday; yesterday is my "normal" and today, whilst I'm somewhere else, i'm here to tell you what a horror show it is. I'm here to beg you to throw your TSH orthodoxy to one side, because with it, you deny me a life worth living.
To my former work colleagues. Every time I said how exhausted I was following a weeks' work, you tried to tell me that it was normal, given that I hadn't worked in a proper job for a while. Going to bed even more exhausted than usual at 8pm on a Friday, or after a rare trip to the office on a Tuesday and taking 2 days to recover to some kind of space where you have the energy to cook a simple dinner, or walk the dog, or enough brain power to watch something on TV properly (I can't even concentrate on my beloved Arsenal on a really bad day) is NOT normal. It does not comfort me when you try to normalise my experience. It makes me feel like you think i'm just whinging. This is not remotely normal. Don't pretend it is. You make me feel that I can't even talk about it, because you are not even trying to understand. Do you realise that your attempts to normalise my situation mean that I have to deal with feeling socially isolated, because it means I can't share my reality with you.
To my previous boss. I resigned when you said "you must come into the office on Tuesday, but I'm concerned you are telling me we're not getting value for money from you on the Wednesday". No, you weren't getting value for money on a Wednesday, because you were making me more unwell with your Tuesday. I'm glad for you that you don't understand. I genuinely hope that you never understand. But I do hope that you will grow and learn to treat people like me with more compassion. The look on your face when I admitted that I self-medicated. Crazy, isn't it? Because in your world, doctors are there to help, and the doctors know best. I used to live in that world too, before I got hypothyroidism. I see my endo for a dose tweak once a year. Laughable, when this cost me my job, but that's the state of the NHS post-Covid and there's little I can do about it.
You know the really sad thing about this? The really sad thing is when I'm having a worse day than a normally bad day, I blame myself. Anxiety and depression are side-effects of inadequate medication (they're also side-effects of an inadequate system for people like me; can you imagine being told it is in your head by doctors and endocrinologists in this state?). I blame myself because maybe I didn't eat as well as I could have yesterday, because I was too bloody exhausted. I blame myself because maybe I forgot to take my vitamins. Or I blame myself for taking a long walk, because walking was my joy and I have an active dog. And honestly, because i feel so bad, for months at a time, I start to wonder if it isn't actually probably a bit normal for my age and gender after all, because tired, grey, brain-fogged exhaustion is my normal.
I hope, doctor, work colleague, whoever you are, that you can see how incredibly hard it is to live in this world of chronic fatigue, brain fog, and self-medication, because the system is too underfunded and under-researched to help? And for more fun, thyroid treatment in the UK is particularly hit by the geopolitics of heath and big pharma. It'd be fascinating if it weren't me living it. To add to that, sometimes the system is misogynist (this disease impacts far more women than men and symptoms are therefore frequently dismissed as "normal for your age and gender") and sometimes it is plain ignorant. I have experienced the gamut. To make this trickier still to navigate, one of the main symptoms of this nightmare is the inability to express yourself and feelings; the thoughts don't form properly, the words don't come, but the feeling is there... it is just trapped inexpressibly in the fog. So can you imagine how hard it is for me to talk to you when I'm struggling, doctor, colleague? I can't explain myself well, because when I am struggling, which is most of the time, I am barely able to function. The lights are on, but...
If I haven't whinged enough yet, the other thing I would like you to understand, is the loss of identity. I woke up today and I felt like me, like Lotika. I have not had that feeling since 2nd August, when I had it for one day alone, just like now, most likely. The good days are so momentous that I remember them. I'm pleased to discover that I still exist. I'm still in there somewhere, under the wrong levels of medication, the fog, the exhaustion. The woman with fire in her belly, the woman who thought quickly, the woman with something a bit edgy about her; a chip on her shoulder too, probably, one that I've not had the energy or strength to pick up and carry of late. All those things made me good at my job. Can you imagine losing the very characteristics which earned you your living? Can you imagine what that would do to your confidence, let alone your ability to put bread on the table, contribute financially, contribute to society through taxation, through well, anything.
This brings me on - friend, doctor, colleague - if you think I am whinging, to the list of things I have lost to this disease, inadequately treated, over the last 8 years: my career, my job, several teeth, my figure, jogging, weightlifting, yoga, friendships, my love of life (my get-up-and-go got up and went) travel and whatever else it is that having a little disposable income brings... access to culture, perhaps; peace of mind, perhaps; that feeling of security, independence. But most of all, I lost myself.
To balance it out, because having whinged for this long, I will say that there are some good things about this. Seriously. I am kinder, more understanding and more compassionate towards others as a result of having to live this way. If I'd met someone like me 20 years ago, the chances are I might have suspected they were trying to play the system. (For what it's worth, I don't qualify for benefits as far as I know, so I don't "gain" from this situation in any way.) Now, that's the last thing I would think. I think the system is broken and until we can fix it, compassion is key.
Every little task, on a "normal" day, for 360 days a year, is a major exhausting event and trauma for me. So, yeah, your commute into the office once a week nearly killed me, because it came on top of getting out of bed, taking a shower, doing the job, all of which were supremely exhausting anyway. So, sorry, not sorry, ex boss. Endo, of all of them, you are the one I have some compassion for. I can't imagine how you are struggling to catch up on your case load and at least you prescribe T3 on the NHS, which makes you one of the enlightened ones. And you even listen. But please can we medicate me to a life worth living, rather than a TSH which makes YOU comfortable? What about ME? For some reason, this disease, is all about you health professionals and what YOU are comfortable with and not about us patients. I am here, on a good day, to tell you that I believe I have a right to feel well all the time. GP, please just run thyroid function and vitamin tests when I ask for them; maybe every 3 months unless I prefer otherwise? Future work colleagues: yeah, I know it is easier to believe that I am crazy than that a supposedly 1st world country, our beloved NHS, treats some people this way because they have the wrong condition. That's the sad reality. Believe me or don't believe me, but whatever you do, don't try to normalise this and don't gaslight me.
Is this really so much to ask?
Lotika
(Sorry this is a bit long and I didn't edit it - I wanted it to run from the cuff somehow)
*********************
For what it is worth, having tried various T4/T3 combos, I've come from my prescription (112.5 T4 2 x 5 T3) to an intermediate position of 62.5 T4 and 10 T3 (together, in the morning, and occasionally 5 T3 in the afternoon when I remembered; I didn't find it seemed to make any difference whether I did or not as it doesn't seem to do anything for me in 5 mcg doses these days) and now 50 T4 and 10 T3 in the morning and 10 T3 in the afternoon... Long story. I spent a long time thinking that I needed a decent level of fT4 in my body, but I looked over the history of my thyroid test results and given that my conversion is awful on T4 only, I came to the conclusion that my body probably wasn't doing anything useful with T4 and have felt no worse for dropping it down... and a lot better (so far) for taking 20 mcg T3 a day! Fingers crossed it continues, although experience tells me to doubt it. Still, every dose you try is progress, isn't it?
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Ta! I had writing about a bad day on a good day on my list for years, ironically. I can't explain it on a bad day because the brain fog is too much. I figure, with a very thorough editing job, it's the bones of something I can actually use with my next employer... Can't believe I left decent hair off the list of things lost!
You have managed to express this so well. Trying to explain to friends, family, colleagues yet again that we're having a bad day, on top of all the other bad days, and sensing their scepticism becomes yet another toll of this f*cking disease.
You go, girl. Here's hoping for more good days ahead. Share some blood tests with us (include the ranges in your post) and some wise ones may be able to help...
thank you, 1tuppence, you’re making me cry with your kind message!
You are welcome to print it, but, if I am not clogging up the board and making a nuisance of myself, I would like to edit it into a better version and repost, because the above is not my best writing, and it omits many of my (and our) symptoms. I have some job interviews coming up, but will hopefully do it in the next couple of weeks!
Lotika....as far as many of us are concerned, you are speaking for us.
We can identify with what you say.
It's so incredibly difficult to explain to a medic what is happening beyond blood test results when our minds are fogged.
When we feel not well, and we have no energy to spare, to fight to be heard as a whole person seems beyond endurance...especially when the ears we speak to are covered in "It's the TSH that matters" or "Your bloods are normal"..... nothing else seems to penetrate their own "fog".
I've been fortunate in that eventually, after years of worsening struggle and endos who were as above, and even insultingly rude, I asked my GP at the time, if he totally ignored my blood test results what he thought was wrong with me? I felt dreadfully ill and was desperate.
He said, "We were convinced you are hypothyroid"...and offered me a trial of Levothyroxine.
I'd found this forum by then. This forum and the wonderful support and advice based on learned experience and knowledge, gave me the confidence to speak that I needed.
And just this Thursday, I've seen an endocrinologist who looked at me, what was happening and took my results into account, but based his treatment of me on his knowledge and experience. He told me 80% of his patients are like me... their thyroid status is not reflected in their blood test results.
So Lotika, Yes, there are other symptoms we struggle with, yet your writing speaks so strongly of the struggles we face, not simply every day...as there are days better than others...but those better days tell us clearly what we are missing on those other "not better" days....and it's so easy after years of "other, not better, days" to forget how our days need to be
Once more, I deeply thank you.
Write when you feel it's right for you.... you help yourself, and many many others of us.
Blessings...and here's to "Better days in every way".
Good luck with your job interviews.....I hope you find something that helps to bring you what you need. xx Hugs
You've written your experiences so well, thank you. It was so good to read that you've a GP and now an endo who are able to treat you as an individual according to your needs and not the 'rules'!
We often encounter this sort of thing: "...years of worsening struggle and endos who were as above, and even insultingly rude, "
"He told me 80% of his patients are like me... their thyroid status is not reflected in their blood test results."
"...nothing else seems to penetrate their own "fog". "
Some many of us have suffered these too and it makes us feel that we're the only ones, alone with this sort of neglect. But really, it all speaks to the misogyny that's incredibly still too prevalent amongst car mechanics and medical practitioners particularly! It's coupled with the over-mechanisation of medicine which renders practitioners into technicians applying the state-mandated fix in strictly calibrated doses according to 'evidence based medicine' - which, in common sense terms, is nothing but dicing with probabilities that take into account perhaps only 3-6 factors when there are actually 20 or maybe even 50 factors that should be considered!
BTW, that "fog" is real. It has a well-researched, little publicised formal name:'deformation professionelle' (identified first in 1937). More politely known in the Anglosphere as 'job or professional conditioning'. Where the culture, traditions, loyalty, attitudes and groupthink of a profession deform an individual's ability to think and act independently, rationally and/or ethically outside those narrow strictures. In some psychology textbooks and papers it's considered a psychosis.
Thank you Levojunkie for your kind words. I am so sorry so much of this applies to so very many of us, lots of whom have no idea of the help here in this forum, so struggle on alone.
Your last sentence made me laugh, never mind chuckle xx
👍 You're welcome! Great that you got a laugh out of it...just imagine going to the doc and after listening to the same old spiel yet again (the readings are always correct, keep taking the meds, do more exercise, you may be depressed, let me give you some tablets for that....blah blah), you hear him out (could be a her, who knows these days...) and then you calmly and confidently look him straight in the eye, with genuine concern, ask, " Oh dear, doc, do you think your deformation professionelle psychosis is playing you up again...? You know that's treatable these days?"
Hi Lotika, thanks for your openness and honesty; I’m sure you have helped many people with this post. I was relating some of what you said to my sister who has cognitive decline (including brain fog) over the last few years - she’s only ever been prescribed Levo and didn’t know about the importance of T3. (TSH 3.48; high cholesterol, folate: normal). She was diagnosed with hypothyroidism about 4 years ago when she was going through a particularly stressful period at work. I never thought she would be on it to this day (!) and she’s not happy being on it as her symptoms are getting worse. I often wonder whether she should’ve even been prescribed it in the first place and, perhaps by leaving her stressful job, her symptoms would have alleviated without medication. She regularly exercises and her diet is good.
I will be seeing a doctor with her next week and I will asking a heap of questions! I wanted to ask you what brand of NDA are you on and was the change in mood and overall well-being significant by adding T3 to T4? Thanks again for your post.
Thank you for your lovely response. A feeling of cognitive decline is a symptom of undermedicated / inadequately medicated hypothyroidism. With a TSH of over 3, your sister is almost certainly going to be undermedicated. She could try more levothyroxine, to see how she feels with her TSH at less than 1. About 80% of thyroid patients will do well on levo (t4) only, if they are given enough. T4 is a storage hormone and T3 is the active thyroid hormone, which we need to feel well. The body converts the T4 into T3. Around some 20% of us (it is thought) struggle to convert it adequately. If, once she is taking more levothyroxine (T4) and her TSH is lower, but her T3 is still low in range, then it is worth looking at adding synthetic T3. I am fine with any brand but am currently prescribed Roma on the NHS.
I read your post in your sisters behalf and my guess is that when you test her T3 levels, they will be either below the reference range or at the very bottom end of it and this is likely to be causing her symptoms. On whatever treatment, I suspect that we need our T3 levels at least over 50% through the reference range to feel human.
She is incredibly lucky to have you advocating on her behalf and I wish you both the best of luck.
Thank you so much for the information you give in your reply to Butterflycake1 . So clearly explained - fantastic! So, say if we're unlucky enough to be in that 20% of struggling converters, would a higher dose of T4 do the trick? Or is conversion struggling an absolute bar?
And wouldn't it be brilliant if we each had thryroid advocates?! You definitely need someone to speak for you when you're so foggy and wibbly wobbly!
Levothyroxine is for life. We don't recover from hypothyroidism unless it was caused by something transitory, like pregnancy or a viral attack. We all think we were better off before we started and perhaps we never should have started taking that pill. But we should. This is a progressive illness. Stopping the medication is almost never the right thing to do. Your sister is badly treated to have a TSH left at over 3. Your job for her is to convince the GP to increase her prescription by 25mcg a day and retest her bloods in 8 weeks time with a view to further increasing by 25mcg until that TSH is 1 or below. Then, and only then, can the next steps be considered.
Thanks for your response. My sister ‘stayed’ on Levo on the dosage given by her doctor/endo for approximately 5 years - with no T3 or vitamin testing. She went to see her Endo once a year - her job was very stressful when she was put on it. I understand more fully now that we all have to be proactive about our health and really question what medication we are given, for what reasons, and the dosage amounts.
I think the ‘old’ way of the doctor-patient-trust relationship (that our family experienced in a small town, and where the doctor took much more of a proactive interest in our health) is no longer. I’ll be with her next week to get her blood results and will post them on here. Thanks again.
Agree TSH WAY TO HIGH when on medication. Doc an ignoramus. She might yet do ok on levo if they bothered to get her on a therapeutic dose. High cholesterol a symptom of being hypo/under medicated.
Have you calculate guide dose of Levothyroxine from the NHS GUIDELINES 1.6ug per kg body weight? I fought for every dose increase quoting guidelines and scientific paper references all the way. My journey is on my profile. I had severe cognitive decline when hypo. Cooking on gas again now. Getting sorted quickly gives people a better chance of finding a sweet spot.
Thanks so much Charlie-Farley and I will check out the NHS guidelines. My sister is 59 years old, 10 stone, 5ft 6 inches. She has a balanced diet. Takes Cod Liver Oil daily (no other supplements. (Although, I think she needs more Vitamin D and Vitamin B-12 in her diet?). Walks about 3km daily, low stress levels now - she worked as a legal sec in high pressurised jobs for over 30 years. Her doctor just increased Levo from 50 to 75mg. I’m trying to ‘arm myself’ with as much information as possible so that when I go with her to the doctor (next Thursday in Ireland) I can know what I’m talking about! This portal has helped me immensely and a very big heartfelt ‘thank you’ to all you generous contributors.
So optimal vitamin levels (not just in range) are required for effective utilisation of thyroid hormone. SlowDragon has posted numerous times on this as does SeasideSusie (probably numerous times a week 😂)- you can find replies to forum questions on their profiles.
This forum saved my life, but I took their advice and put the work in so I could advocate for myself. Important to read others lived experience. Very insightful.
Re cod liver oil - there was an exposé about quality and I’d Google for that as quite a lot of it is not good quality.😬
it’s possible - but she could be on the most efficacious levo in the world and if her vitamins and minerals are not optimal (not just in range) she might not feel the benefit.
Many of us hypo-types suffer with low stomach acid which then leads to nutrient deficiencies and fatigue and leaky gut which then leads to inflammation. It’s all a vicious circle that needs to be broken, so everything has to be addressed, but it’s a good idea to go and find SlowDragon and SeasideSusie’s posts so that you can see what needs addressing.
I went strictly gluten-free with no expectations. I have been amazed at the profound effect this has had on my health. Before I even lost any weight, I literally deflated my whole body was puffy - I hadn’t even realised it. Not everyone realises such a benefit from going gluten-free but it is certainly worth trying.
I also avoided lactose for a long time as I found this was also giving me heartburn. As things have improved, I have been able to re-introduce some dairy products into my diet without any adverse effects.
I still make sure I don’t ‘hammer it’ though.
There are lots of ducks to get in a row not just the medication.
1.6 x 63.5 Kg =101 ug 😉👍 (don’t forget guide not gospel- we are all different)
Seriously read my profile and later posts it may help you make your case for your sister 🤗
Lokita…. This resonates so much … I remember walking with my sister a few months on a ‘normal’ day … I wondered what bought this normal day about and what had been different for it to pop into my world…. Whatever it was I wish I could harness it so that normal became an every day event. I’ve lost my job due to ill health too and whilst struggling with the maize of possibilities and different medications I am looking for that holy grail ….. which we all are.
Thank you for your words …. Thank god for everyone here in this group as your advice and support has lead me to new things to try.
I know exactly what you mean! All of a sudden, a good day out of nowhere and we’re scratching our heads! I once had an amazing 24 hours after eating home-made pho, with a home made chicken stock… and it felt like the pho had something to do with it, so I googled…. Home made chicken stock is naturally high in selenium, so it was improving my conversion, I think! Crazy stuff! It reminded me to take my selenium and since, I’ve not quite had the same reaction to home made chicken stock, but when I have the energy and inclination, it does still seem to do me good! Good luck with your quest! Xx
Thank you for writing this post, I can relate to pretty much most of this, it sadly just makes me more frustrated with the medical profession who ‘know best’! I was diagnosed nearly 2 years ago & because my TSH is normal they’re just not interested- certainly no chance of seeing an endo - sad that they don’t understand the impact of this disease 🙁
Hope you have lots more good days & thanks again for sharing this 😊
Hi Lotika thank you for posting this. You’ve articulated so much of how I feel. I think I’ll share this with my friends and family because you’ve managed to capture the experience I never seem able to express. I’ve given up. I’m now on antidepressants as well because the incremental loss of good days just wore me down to a miserable state of depression and anxiety and overwhelm. What a horrible thing this is. Hanging in there though for the next good day whenever that will happen (it will). Maybe it will be today, who knows? Big hug for you x
Oh gosh, how I feel for you, Josephinemachine. I have given up at various points. It’s simet8mes hard to try a dose change because of the fear of feeling worse, isn’t it? I recognise your username, so I know you know your stuff. I wish there was something I could do. I do hope you get your next good day soon and it definitely will happen. Xxx
Thank you for writing this. It should be printed out and given to every GP and Endo in the world, never mind this country.
But I’m here to tell you that you CAN do better than 4 good days a year. You see, I was where you are too as were many of us here. Kept below par completely on T4 monotherapy for years until my old( now retired) endo decided to try me on T3/T4 combo and then, under his supervision, allowed me to play around with dosages until I FELT better and I have continued to do so since he retired. I started on a combo of 50mcg T4 (down from 200mcg/day I was on) and introduced 20mcg in 2x10mcg doses, which have now been adjusted to just 25mcg T4 and 50mcg T3 (still in 2 doses of 30mcg at 6am and 20mcg at 4pm) per day. It meant I had to procure the extra T3 from other sources to top up my NHS supply but really bad days are now a thing of the past. My TSH has been unreadable for many years now, but that doesn’t bother me in the slightest. My FT4 readings are below range, but my FT3 readings are spot on at the top of the range. I still get tired but it’s a “good” tired and I get restorative rest from my sleep. I still get bad days, but they’re the exception rather than the rule now.
Only you can tell how you’re feeling so, like many of us here in the past, perhaps it’s now time to take charge of your own health and help yourself get the medication you need. You’ll get plenty of help and useful advice here whenever you need it on how to optimise your treatment. I wish you all the best.
PS. I have a Springer Spaniel not exactly known for their lack of exuberance so I’m with you on the doggie walks and lost balls!
I have a working cocker, so I hear you on balls, bounciness and exuberance!!
I am self medicating and have a review with the endo in Dec. I managed to stockpile T3 by ordering my repeat prescription 2 weeks early as routine for months and a good friend recently went to Turkey on holiday and kindly was able to get me some T3 over the counter! My plan with the endo for Dec is to politely tell him to do one if a) I still feel well in this level (good today so far!) and b) if he quibbles about TSH which will likely be over suppressed in this dose, although I will offer to try dropping the T4 down a little more to 38.5 and retest first, as a negotiating position and because it was what I intended to do… I just lost my nerve as I have a big interview on Monday and don’t want to accidentally screw myself up. Gosh, it would be amazing to go to the interview feeling like this, like me! I’ve literally not done an interview without brain fog, as er, Lotika, for years, and I think I will come across so much better if I’m stuck feeling this well on Monday! It sounds like our dosing is actually quite similar, which gives me hope too! I am also planning on asking the endo to write to the GP asking for 3 monthly blood tests. Endo knows I adjust the dose myself, as I tell him what I am taking at our reviews, so hopefully we can kind of dance around the elephant there, as I don’t think he will verbally or in writing support that, although he does in general, if that makes sense! He certainly has never told me off for adjusting my medication! Xxx
In addition to the NHS test which gets done once a year when the endo phone appointment is due (haven’t seen him face to face since the start of COVID restrictions and no desire to either!) I do regularly test with Medichecks too in order to keep a check on things myself.
Big hugs, your post speaks for so many of us and so beautifully written. It is utterly exhausting and a very lonely business. Those who have shown me empathy and understanding have made so much difference. It’s so hard when people don’t understand or think you just need to get on with it. I think it’s because they’ve just never experienced anything like this so have no idea how it can feel. The feeling of being unable to live life as you’d like to is very hard. I’ve started to be a lot kinder to myself, to love myself more, and to allow myself to rest and cancel things and not feel guilty - listening to my body is more important. Hold on to any little things that bring you joy. Do them as much as you can. Books and good tv shows, any movement you can do, getting sunlight and daylight and fresh air. Seeing supportive loving family and friends. And always hold onto the hope that you’ll have more good days soon 🙏🤗 ❤️
To me, your entirely justifiable rant means you need to scrap the levo and switch to however much T3 your body needs.You would need to build up slowly, with guidance from people who know, and take responsibility for your own medication. There are support groups for T3-only patients.
I'm off course not a doctor and this is just me personal gut reaction. Good luck!
Yes, I’ve definitely wondered that too, Copperknob! The plan was to gradually decrease T4 whilst increasing T3 and stop when I felt I was in a good place! I’m still feeling great today, so maybe, but you know how long a dose takes to settle… fingers crossed! Xx
memo to Chancellor of the Exchequer ~ to be delivered via the usual channels (Larry the Cat) ......
Imagine how much it would improve UK Economic Growth if the NHS improved thyroid treatment such that thousands of thyroid patients had good days on 'most days of the month' ..... instead of 'once in a blue moon'.
.....as evidenced by this excellent piece of writing , most of us are really quite good at producing something of value when we are 'on form'.
Ha! A Dear Jeremy, as opposed to a Dear John (my local MP!) who, as you know, has been a proud and grateful(!) recipient of many a missive from me, on thyroid and well, what’s wrong with the way his party run the country, the lucky chap!
I can’t remember the exact percentage of the UK workforce they think are not working due to NHS waiting lists, but the number was staggering and for some reason I have 20% in my head, which is surely too high to be right; in any case, I totally agreee that sorting out the NHS would definitely help the economy, because it turns those of us who are economically inactive through ill health back into tax payers! Please make us better and take our money, Jezza! We want to do our bit!
I'm pretty sure I read the other day that there are 7 million people waiting for appts/treatment. That's on top of people like us who they under treat until we're nigh zombified. YESSSS! I would really love to be back working. I loved my work so much that it was never work, but a privilege to be in the role I was. The NHS put a stop to it all. And that was before the pandemic laid bare the sheer inadequacies and mismanagement. People are becoming far less scared of calling out the NHS now. Soon there will be actual demos calling for total reform...! Can't wait!
Oh, tattybogle! How often have I railed against this sheer waste of human beings... My badly (mis) treated disabilities have cost the UK £millions in lost revenue and endless consults with idiot doctors who can't be arsed or don't have the intelligence to think further than the NICE formulas on their precious screens. I can honestly say that, one way or another, my country disabled me. And my government is fine about that aggregate cost of millions of us being disabled. No wonder the country's in the dreadful state it is.
wow, this is brilliant you sum up thyroid ( lack of ) care superbly.
I’d like to offer some words of comfort to say don’t worry you will be fine but I can’t because you won’t unless things in the medical set up change drastically.
I would like you to know that I, and many others DO understand though.
I was told to eat less and move more by the endocrinologist I was referred to, it was humiliating.
I couldn’t have eaten must less if I tried and exercised myself half to death attempting to shift some weight which was my goal back then.
I can no longer do that as my arthritis is shocking and I’m physically not capable anymore.
The only thing that worked for me in a positive way was intermittent fasting, if you have the strength of will to begin it may be worth a try.
It did help me and I have stuck with it 90% of the time since I started 3 years ago, I feel even crappier when I don’t so that’s how I knew it was having a positive effect.
I’d seen in a thyroid support group someone mention ‘Delay don’t deny’ by Gin Stephen’s, ordered the book, read it overnight and started the next day.
It may not work for everyone but it is certainly worth a try.
Like you I also self medicate, Levothyroxine does absolutely nothing for me, I buy T3 from a bodybuilding site and use what makes me feel better.
Just know you were heard and understood and give yourself a big hug from me.
On a good day I am the Duracell bunny, such a shame it never lasts. X
omg Lotika, I'm living your life - except that I don't have a dog because I'm just not up to walks. And I so miss dogs... Yet another sacrifice to this disease or, probably more accurately, to the woefully poor treatment that the NHS palms us off with.
Like you, I don't shower that often because it exhausts me - I have to rest for a couple of hours after because I get too hot and woozy and my body doesn't do temp regulation well enough now.
What makes it all worse is that not one person in my life believes how disabled I am (with this and other conditions). There's this air of 'well, you could do better if you tried a bit harder'.
I won't go on - I'm sure most readers here will know the picture only too well.
But I AM glad to know you had a blessed good day - it was truly lovely to sense your feeling of joy amidst the habitual dreary drudge of it all...
it’s only in the good moments that we realise just how much we are suffering. Thank you for sharing, it’s a good reminder of how brave we all are xx
I hear you, Lotika, every word and feeling of frustration, loss, devastation, rage and the rest.
You are a powerful advocate and evoker of what living with a thyroid condition is like. When I hear you talk about your dog and its ball I remember, too, the days when I find parenting hardest because of the energy I have now and the unlimited energy I used to have about me.
I hope those around you in your life see and understand you well and this one good day leads onto many more soon.
I absolutely understand, I’ve been on the same journey, even to the pushing myself to walk the dogs and just occasionally finding that I’m enjoying being out with them. I now take T3 only, obtained by private prescription from a friendly GP.
It’s helped hugely but this year I added in LDN which has added great improvements especially to my level of stamina, many more ok days now. You can self refer to clinic158 or Dickson chemist In Glasgow. I’m paying £100 for an annual supply now. Definitely worth the effort. I’ve lost enough water weight or mucin to drop 2 dress sizes & my rings and watch are too loose now. No longer have swollen fingers and wrist.
Unfortunately I also have multiple chemical sensitivity which has made my life very difficult. The first time I told a GP about my symptoms he replied, “Well that can’t happen.” Effectively calling me a liar!
Let me know if you would like more info about the LDN. It’s even reducing my MCS symptoms now.
Fantastically well written post, speaking for so many of us. I've saved it. I might post an edited version of it to my 2 village friends who have been rather cruel in their treatment of my condition. They ignore me and try only to chivvy me along or make light of it. One treats me like a massive hypochondriac! Why would I have gone from someone who never behaved like that and was fit and healthy and slim with a lovely home and garden who even decorated her whole house, inside and out for her not long before it started, to an elephant who can barely walk or stand still for more than a few minutes without pain, living in dirt, dust, cobwebs, clutter and tatty furnishings with a garden gone to pot. Unable to exercise or enjoy life. Why would I have done that if I were not actually ill?! Makes me so angry.
I tried heading for T3 only. But it doesn't work for me. I've tried it before, I should have known. Earlier this year I got up as far as 65mcg T3 per day and down to 25mcg Levo. But I felt just as awful and so heavy limbed it was unbearable. Now I'm easing back into Levo and much less T3. I probably rushed the T3 at the start. now on between 20 and 25mcg a day. But I still feel like a lifeless lump. I tried vacuuming my little office yesterday and poured with sweat. I have no idea why I sweat so much. My hair drips.
Anyway, try T3 only. You look like a good candidate. And I hope you get the job you would like and can complete it well. I hope your good days continue.
Oh Fancy! I once had a lovely house and garden. Now I've become Miss Havisham, sitting watching the cobwebs and dust gather... and I too have 'friends' like yours. Except, with unsupportive attitudes like theirs, I don't call them friends any longer! My neighbour doesn't speak to me any more except to harass me about my infrequent visitors parking in the wrong place - I think it's because I can't pull my bins in now so they sit outside spoiling the aesthetic of our bijou little village green... The neighbour on the other side gave me a patronising step by step little homily about how to get a gardener....Yes...we're all so disability aware and friendly now, aren't we?!! NOT!
It's just as well we're all detached. They can't hear me cussing....
Perhaps explain to that neighbour that their help in moving your bins in and out on the appropriate days would benefit all of you? You are unable to do it yourself...(and I understand that because I need help with mine) and would feel very grateful for their help with this. It's such a simple thing to ask.... and there comes a time when asking nicely for help is what we need to do? x
Many thanks for your constructive thoughts! At the beginning of the pandemic, the wife made it quite clear that we each have to look after ourselves (almost verbatim there). I carried on being neighbourly and after the third time of doing my best to offer neighbourly over that first year (I think that was when I knocked on her door with a bunch of flowers for her birthday or maybe it was when the I got 3 government food parcels delivered all at once and offered her some of the fresh veg I couldn't use, and got sent away with a flea in my ear), I became quite scared of them and despondent.
They know my circumstances. They're a very insular couple. I realised that they only do 'public helping' where their 'good deeds' are recognised by many. After her aggressive rant on my doorstep about one of my service providers parked in the 'wrong place' I'm really too scared now to even go out in case she has another go at me let alone ask them for anything! It really seems that they've demonised me rather than sympathising because of my disabilities. I just don't have the energy to look after myself properly now which means I have nothing left over to deal with unkind neighbours...
Oooh! rotten neighbours are just that...sad individuals who are un-neighbourly. I'm lucky with mine, and very sorry to learn it's not like that for you.
It sounds as if you live in a small place? Is there any sense of a community group living there too? Perhaps a gentle request to them if there is one, might provide someone willing to help put out and bring in your bins?
Otherwise my "naughty Self" might feel like making a visible sign to attach to my bins saying something along the lines of
" So sorry. Health issues mean my owner can't move us ....would you like to be kind and offer to move us in and out? Thank you if you can ?" Hugs
😂 I'd love to stick a message like that up! But I know it would really set the cat amongst the next door pigeons - don't want to make situ worse. We had a big turnover of home owners just before covid in our little close and my friends were amongst the leavers - I miss them so much. We all discovered during covid that our community wasn't really all that helpful, it was all rather an illusion. In fact, it was people from the next village up the hill who were the ones to very kindly come and help as many as they could! Whilst able-bodied people here sat back. Sad.
Like so many on here, Lotika’s post brings me a combination of comfort - (cutting through that annihilating sense of being the ‘only one’ ) - and desperate frustration at the inexplicable lack of awareness, universally, of thyroid issues.
FancyPants54: your description brings me out in empathy! I’m viewed with suspicion and probably ridicule by a few of my village neighbours, especially since 2018 when irrational and unscientific intervention by a new GP wrecked me. What I find eternally puzzling is that if you say you are being treated for incipient Diabetes 2 ( …and don’t even start me on that!), most people nod sagely and sympathetically. Needless to say, unless they also have a thyroid issue, they seem to become insensate when you try to explain why, last week, you were walking quite normally, but today you are a bit like a wheelie bin dragging a ball and chain. The sweating! Started long before I finally got diagnosed, and continues 25 years on. (Recently encountered someone in my village whilst I was having a deluge, face waxen and resembling Boris Karloff at his best. She hurried past, head down, obviously disturbed). I managed the pouring sweats when I was a teacher and a trainer, by making jokes at my own expense, but now know it is a ‘red light’ indicator that means trying to work through it will bring a crash imminently. Now I rest when the sweats start and employ the ‘Am I bothered?’ technique if friends, husband or neighbours appear to, yet again, fail to comprehend this daily, decades-long, Sisyphean task of earning a living, keeping plates in the air and pretending ‘it’s just a virus’ when complete physical and emotional breakdown resulted. I’m retired now, thank goodness, and no longer have to justify every element of the disability. But like so many of you, I lament deeply the fact that I’m no longer useful, don’t have the energy to use any former skills, and often feel that I’m an albatross hanging around the neck of my husband ( who, ironically, has had chronic health issues during all our years together, but these are ‘proper’ illnesses, and although I supported him, now we are Darby and Joan, I know he gets impatient when my facial muscles reflect that damned exhaustion).
Sorry this is a long, shrill diatribe, but we all need to get it out there. We’ve had to minimise symptoms; be circumspect with employers; watch family and friends glaze over …and often decide that those are no longer real friends ( ‘Pah’, said my friend of 50 years when I sympathised with her recent insomnia, mentioning that I’d not slept properly for 20 years…’If it was that bad you’d have done something about it!’)
Thank you all, from the bottom of my heart, for being present and supportive. There’ve been times when keeping on seemed too much to contemplate, but this forum has been a saving grace.
Gosh yes, I recognise a lot of what you said in what I said. The friends who minimise me really annoy me. I have just moved my 88 year old mum from her 3 bed home into a new mini one bedroom home in my garden. It's been a 9 month project to get the planning permission, the bat survey done before we put a spade in the ground. I've done everything I could think of to make her life easy for her age related disabilities. No steps, all new, lots of space for her walker, lovely shower room and me on call. And yet no one will even acknowledge what I have lost in the past 10 years. I've given up so much just to keep going. I have no idea how I managed to be so energetic this past week. Adrenalin I suppose. But now my feet are so painful I could cry when standing and I'm not sleeping well. I'm sweating at all activity. It's horrible. I'm sat here typing this with the front door wide open and I'm in my little office off the hall in a t-shirt with wet hair (from sweat) but it's chilly and damp and I'm quite cold.
I was hoping one day to find just the right balance of T4 and T3 and get rid of the sweating, the painful legs and feet and to be able to walk across the fields for fun again. But it's a long time coming and nobody cares.
I wish more people could read this. You cannot understand until you have thyroid issues yourself just how debilitating they are. My boss some years ago had an underactive thyroid which she talked to me about. I was sympathetic but didn't really understand what she was going through day to day. 20 years on and hyper rather hypo I understand and if we ever met up again, I would apologise to her for being such a rat bag some days
I wish I had written this Lotika. I found myself reacting noisily, physically, mentally and emotionally. It’s a beautiful piece of writing and I doubt very much that it needs tweaking. Frankly I want to take copies and present them to all sorts of people. One problem I foresee (absolutely no criticism of you, or the piece) is holding a readers attention for the necessary time required to read it. We on the forum clearly totally duplicate what you are saying. People in general don’t have long attention spans these days and most certainly: GPs, endocrinologists and politicians seem to have micro attention spans. This is a piece which would find other people suffering similar, who do not necessarily know they have hypothyroidism. This is a piece that Thyroid UK itself could/should be promoting.
So agree with the idea of ThyroidUK having/using this (with Lotika's permission of course). It speaks so very well of what it is to have hypothyroidism.
arTistapple, I agree, it is necessarily a long piece because of the explanation required; not much to be done about that! On the other hand, it could definitely be tidied up a bit. For example, the first couple of paragraphs could be made much shorter and in general, when I write without editing myself as I did here, I tend to write one sentence and then repeat it immediately after in slightly different words and there are definitely examples of that here, so it's at least 20% longer than it needs to be...
If it were to be the version I'd like to turn it into, it would contain references to the NICE guidelines and also to the consensus document on T4/T3 combination therapy... we'll see if I can manage that over the next couple of weeks!
An open letter to the Press would be wonderful Lotika . You have put how this awful illness affects us and until medical staff understand this, they will never take us seriously and always take the easy route of only testing by TSH and believing that Levothyroxine is the best option for medication for us. It was quite a revelation to me when I began to take NDT and my anxiety and depression lifted in 3 days. This was in 2018 and I had my sub-total thyroidectomy in 1981. Unfortunately I cannot say I am still feeling as good as in 2018 as the best NDT for me was discontinued in 2020 and I am no on a compounded one. It beats me how they are all so different. I do hope you have many more good days.
Yes, thoroughly agree. Lotika's piece should be widely published. Send it to the BMJ and the Lancet, NEJM too whilst we're at it! I promise you, in my experience medical journals really do pick up patients' articles.
Totally get you Lotika. However I don’t want you to lose the immediacy of your communication. I would get the other stuff down on paper by all means. Almost a duplicate piece but leave this one alone to keep referring back to. There is something about this piece which communicates very very strongly. I want to say it’s RAW but it isn’t. It’s sophisticated, a bit feisty, stops before outrageous anger (possibly making it easier to read). It strikes a really good note. It’s not an academic paper. It’s purpose is quite different. Apologies if I sound like I am attempting teaching a wiser head than mine.
thanks both, I will leave this one here for ref, but re work bits into something else, I think. What I would personally love to have is something that explains it to my next employer, so I would want a version of this - obviously much softer, but nevertheless I would still say that I consider it was treated very bad,y at my last two workplaces, because it absolute,y was and I could have taken the last lot to tribunal in my personal view - which also contains some links / references to the journal literature, in as much as it supports our position. In a sense, the NICE Guidelines do, because they don’t explain what should happen to people who don’t respond adequately to T4 only, whilst acknowledging that they exist, and also there is some useful stuff in the consensus doc on the future work required for T4/T3 combination therapy.
Lotika, you need to do whatever is best for you. You will do that with the Blessings of us all.
I've saved your Post, as I can't print it out until my printer is working once more.... and there's no saying how long that will be....
The endo I saw last week is also a trainer of endos......with your permission, once my printer is working again, I'd like to send him a copy, keeping your writing as by "an anonymous hypothyroid patient" . He told me he wants the medics he trains to be better than him....Wow! such a generous position to take.
I think he would find your writing of immense benefit to achieving his aim.
Such a beautiful, intensely and extensively described experience of hypothyroidism would surely benefit anyone wanting to help sufferers with hypothyroidism.
Sincerely, I can't imagine a better way..... your voice is "the Voice of Experiencing Hypothyroidism". Hugs, and all the very best with your interview xx
Thank you, Lotika, for sharing your good day. In doing so you become a beacon of hope for all who are still struggling. What seems impossible today could be possible tomorrow. I'm so happy to hear you being happy. Wishing you a million more of those wonderful days
So well written, and sadly so relateable for so many, me included. I really hope you have many more better days.
I spent over a year feeling like this, from when I was first diagnosed and started on 25mcg levo up to when I was on 150mcg and the Dr wouldn't up it any more.
I was like a zombie, unable to function. Crying most days through sheer exhaustion. Not able to express myself properly due to brain fog, and having to take my husband with me to GP appointments as I couldn't remember what I wanted to say. I did manage to shower, but didn't have the energy to dry my hair afterwards. Exhausted but couldn't sleep. Weight gain even when dieting. You get the picture.
On paper my T4 and T3 levels looked really good, the levo raised them both. I didn't feel better in any way though.
I bought some T3 in Greece over the counter when we were on a cruise, and eventually decided enough was enough and started taking it. I started very low and slow, and eventually, at about 25mcg started to feel a difference and finally my low carb diet started working and I lost some weight.
I'm now 2 years on. I'm still not well, but compared to how I was I'm doing much better and function adequately! I'm lucky I don't work (medically retired for something else), there is still no way I'd be able to manage that.
I got all my vitamins to an optimal place, and went fully gluten -free. I also started HRT as I'm peri menopausal and hoped it would help my joint pain (but sadly not). I'm now slowly cutting my levo down and raising my lio, as I just don't think levo does anything for me at all. Changes take a long time, as giving at least 6 weeks in between each one. I'm currently down to 25mcg levo and 43.75mcg lio.
I have relatively good days, mainly average days but I'm at least functional on those. The awful days are few and far between fortunately. I still remain hopeful that one day I'll get the level right and finally feel normal again!
I hope you can get some improvement too. So many of us on here can relate to how soul destroying it is. Wishing you all the best, and lots of luck for the interview on Monday. 🙂
Thank you for your post. It sums up the rollercoaster nature of this condition.
It is only when I have a good day, that I realise how hard and how cr*p the bad days are. Only on the good days do I marvel at how I make it through the bad; on the good days I realise how much easier life could be. Because the bad become so natural and everyday that they are the way you live you life. You battle and you shrug off the weariness. How I envy my previous functioning thyroid self.
I took it so much for granted when every day was a good day.
Sorry for how it is for you.... and others......your cartoon is perfect, and makes me smile wryly smile...yet a smile nevertheless, so thank you for that.
that’s exactly the feeling I get, MissGrace! On the good days, I have absolutely no idea how the heck I make it through the bad or “normal” ones. It’s mind blowing and we’re surely all so much stronger than we realise.
Bless you Lotika , thank you for sharing. You should print this and hand it to anyone who isn't understanding where you're coming from. You're describing me just 4 years ago. I was given the diagnosis of fibromyalgia in 2012 after an accident and spent 6 long years without any reprieve before finally talking an NHS endo into letting me trial T3 and was give 10mcg in replacement of 50mcg T4 (I had been on 150mcg for years and my fT3 was always low or right on the bottom of the range. I had my first good days after that. I then, quite typically it seems, fell backwards and they upped me to 20mcg T3 and I had more good days. It took another 18months for me to really feel well and fit enough to get back to the gym and strength training. Something I was convinced would never happen again. That in itself helped me further. I had no idea at the time that I was a poor converter. I'm finally, with the help of this group, getting my thyroid and vitamin levels optimal. But the dreaded menopause period is starting and I'm using HRT patches but my hormones seem to be all over the place. It looks like I need testosterone replacement too with FAI of 0.9%. Result being more less good days again, but nothing like as bad as before. Degenerative disc disease and a suspected herniated disc isn't helping either. There's so many things to take into account and try to balance, it would make you dizzy. I'm going to try a gluten free diet to see if that helps me too. It helped previously with my stomach issues when I was first diagnosed with fibro and I managed to gradually reintroduce it back into my diet, but it's time to see what if any difference it makes again. I just wanted to assure you that there is a light at the end of the very long tunnel when you finally get your levels optimal for you.
You may find that you get on better on T3 only, a few people do. I hope you can convince your endo to let you try despite it suppressing your TSH. The NICE guidelines say that we should be prescribed according to how we are feeling so I hope you can use that and the other relevant documents to fight your case and that you get the good days to be able to compile everything. Whatever happens, I wish you many more good days! You're a brave, strong woman, regardless of how you feel on your not so good days.
oh that’s made me cry , I hope things will improve for you soon , people don’t realise what it’s like when your not on top of things, it’s a hard journey this thyroid problem, all the best lotika x
LOTIKA you should publish this for everyone to understand how hashimotos/hypothyroidism is treated. A question, have you had your gene DIO2 tested which if positive means you do not convert from T4 to T3 well.. And have you tested your adrenals with a 24 hour saliva test. you may have low cortisol. unfortunately, the NHS doesn't do these tests. Read, research for yourself and keep asking this forum.
Oh Lotika, I may be a bit late with my reply to your excellent and so eloquently, heartfelt written post but, I just wanted to add my thanks to all the others and echo everything they have said: I cried when I read it and, indeed, have cried many tears since; I've read every reply, when I cried some more as I could relate so much to so many of those replies; and that is all before I've even written my first proper post! It is this post that has finally spurred me on, though, to finally write that first post - and that's before I can even begin to write my Bio because of that fog and cognitive decline that's so familiar - and will be the post I keep coming back to for validation, time and time again.
So thank you again to youand everyone here on the TUK forum - you are so appreciated 💖😊 👍 Love, respect and all the best from me, PJ xx
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High T3 ERFA Thyroid and Brain Fog
When does it get better?
Trying to balancing T3 and T4 
