Hi all - I am counting down the days until October for my private appointment with a Hashi's specialist. That is my light at the end of the tunnel.
I am also waiting to hear if I can have an NHS ultrasound scan and what the results of my H. pylori test are (it was present when I had a biopsy abroad 2 years ago so it probably still is). Doctor was very reluctant to do the test at all telling me that H. pylori was normal (and wasn't interested in the connections with Hashi's because according to them I don't have it anyway) so I envisage another battle there even if it is positive.
In the meantime I am just watching my health go down and down and my ability to cope likewise. Having to do my shower in 2 shifts if I want to wash my hair has made me realise how far I have sunk.
So....I have very very sadly had to accept I can't work for now. My brain fog is too severe to carry out my work as a creative writer. I have worked so hard to gain the clients and relative success I have and this breaks my heart. For the first time in my entire life I am going to have to claim benefits. That hurts too.
I have a little put aside that means I CAN see a private specialist so I am one of the lucky ones. But this will soon disappear now I can't work.
I am doing all I can in the meantime re supplements, gluten and dairy-free etc.
I feel my grip on reality is sliding further every day. At the risk of sounding highly dramatic I feel I am holding on by my fingernails. I can't cope with anything....trying to fill in benefit claim forms, fighting with my GP to get the tests I need or a medical certificate, making decisions, trying to understand the thyroid function, answering messages etc. Everything just feels overwhelming.
I am so close to potentially being helped but every hour is a struggle.
Just wondering if anyone could pass on the wisdom of any kind of strategy they found helped to help them hang on in there just a little longer? What did others do before they got the help needed? Realise this is grabbing at straws because we are all different but don't know what else to do.
Thanks in advance everyone.
Written by
PurpleNel
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I know exactly how you feel. Hope there’s consolation for you in knowing you’re not alone with all these horrible symptoms. All I can add is that it’s not a death sentence… it does get better at times. Though I don’t know if I might be going one step forward and two steps back these days. Just that those short moments of feeling half way human again give me hope. So hang on in there, it is “fixable”
That thought keeps me going. Also, stopping, or trying to, those fearful thoughts of going even more downhill and panicking about the future. As a blues song puts it: “( …) sun will shine in my back door someday”
In the meanwhile, you’re at the right place to get expert medical advice!
"Never was a worrier before" -- same here; about every little thing… I keep practicing stopping those worry thoughts. I also find making appointments a real challenge, never know if , when I'll be fit at the appointed time, so all becomes nightmarish in my mind, but then things work out. Waiting for people who come late, or not at all, has been a major cause of aggravation, too. So now, I’m like, You don’t come on time, I don’t wait. It’ll work out.
A recent breakthrough: after being faced with incomprehension and/or indifference to my “invisible plight” for so long, I realized I was perceiving the world in general as indifferent or even hostile. But I know it can also be friendly. So I’m working on changing my general perspective. Actually, yesterday with this new perspective strongly in mind (an exercise! Noticing how tense I’ve become out there!) I reminded myself to relax, mostly solar plexus; noticed the corners of my mouth relaxing and even curving slightly upwards instead of tightening up or drooping.(And I used to have such a sunny disposition…!) I soon met a very friendly couple, smiling away at my dog and me (he’s a very outgoing, affectionate soul, like most dogs :)), really smiling and we chatted and I felt tons better after.
A bit long but hope some of this is helpful. Thank heavens for this forum where we can let it all hang out and know it’ll be understood
EXTREMELY helpful - thanks for taking the time to put down your experience and thoughts. Brilliant reminders - especially 'A recent breakthrough: after being faced with incomprehension and/or indifference to my “invisible plight” for so long, I realized I was perceiving the world in general as indifferent or even hostile'
....WOW and YES!! Didn't even realise I was doing that until your words went BOING in my head.
I just KNEW posting this would help me. Feeling very thankful right now.
WOW and YES right back at you, Purplenel! It feels great to be helpful. You’ve made my day. :)I had no idea if my words would resonate with you but gave it a go and now I’m very thankful.
This illness has been chipping away at my self esteem tremendously. I know that it’s an impediment to recovering and that I’m caught in the vicious circle: the worse I feel about myself, the worse the symptoms become or/and feel -- however conscientiously I take vitamins, educate myself, try to dose right etc -- and the worse I feel about myself. How to break out of this even momentarily?
Well you did it! You called for help. And by so doing you helped me. Thanks again!
Going to risk another WOW.....so WOW! Isn't it wonderful how this works and YOU end up thanking me?! What a lovely person you must be to feel lifted by being able to help another.I know oh-so-well that chipping away at self esteem. Not so long ago I was a confident person that was often so bouncy people had to sit on me to keep me quiet .🤪 I have lost my self-confidence and lost trust in my own judgement - all because of this damn illness and its consequences.
I don't think there is anything more precious you can give someone than your time because you will never ever get it back. So again, thank you for giving me that and making me feel I was worth it. And I am so glad that your kindness has also managed to make you feel lifted - even if only for a moment.
I send you a big Namaste bow thru the wavelengths, with a small pearl of a tear.
Don’t know if I’m the epitome of kindness, though I do like to think of myself as being kind but, really, what better way to give of one’s time than by being of service to others? (Not at the detriment of oneself, naturally). Like, ultimately, when leaving this “vale of tears”, I’d like to feel that I’ve done some good to others while I was around.
Meanwhile, I’m still lifted so this exchange has made us “two happy customers”
Keep me posted, pm me whenever, we’re in this (miserable trip, Grrr... ) together. Have a light evening
I’m so sorry PurpleNel 😞 I don’t know how I got through 10yrs of illness. I guess I had peeks and troughs, not every month was lying in bed not able to function. As with autoimmune, I had months where I was full of energy, a new lease of life and I loved it but the crash was awful. My poor husband had to constantly pick up the pieces. Friendships didn’t last long as I couldn’t maintain much outside of my family life. We have never lived near family, my side or his, so we were always on our own and even then family just said I was a ‘lazy mare’ and poor hubby having to put up with me and do everything.
I kept fighting for my health with my GP’s, demanding that they make me well but actually that was a dead end, their hands are tied when it comes to thyroid health. I had to go it alone. I started reading whatever I could (esp after GP’s started suggesting bi-polar and fibromyalgia) Then I stumbled on this forum and the puzzle pieces that I had were able to take shape. One thing I had which helped me and helped members of this forum ‘advise’ me was a history of results, FT4/3, I had been asking for FT3 to be done before I really understood why. That history of always have a low FT3 result enabled my private Endo to see at a glance that I wasn’t a good convertor. I was given T3 to take along with my Levo and I’ve been well since day 1 of taking. Sure there’s been a few ups and downs in the last 2yrs but nothing like I was, just minor adjustments. I haven’t been near a GP in over 2yrs (I used to go every 3-6mths, begging for help)
If you can get anyone to support you, if you can trust anyone, have that in place. On line shopping, a seat in the shower or take baths. Lay in bed, eat in bed. Read, read, read all you can about your health and post here for discussion and support 🤗
Love this reply! PurpleNel - you are in the right place. This forum is great - both for support and for information. It is so hard finding good thyroid care - but you are on a good path. Be kind and gentle with yourself as you begin your journey back to health. Give yourself the time and space you need - no stress or judgements about how things 'should' be - try to accept that you are where you are. You're on the cusp of change. You will be ok. Feel free to pm if you think that would help x
Some more wonderful words of wisdom.....thank you! And 10 years of suffering...that is awful. Mine has only been 2 so I will be forever grateful for whatever powers of the universe guided me to this forum.The 'read read read' is what I am trying to do. Dense brain fog most days makes the going hard but it penetrates in the end. But what I have discovered is like an endless series of yes, yes, yes! moments and as you say the puzzle pieces gradually take shape.
💜 I don’t have words of wisdom because I haven’t figured this out yet. Just words of absolute sympathy and empathy. I’m so sorry. Please hang in there and post every day if it helps. Totally understand how frightening and isolating this is. Go easy on yourself, eat well, sleep as much as possible, hold onto the light at the end of the tunnel. Stand in the sun - it’s coming back next week I think…Big hugs x
Lovely words and a message full of kindness - thank you. I lap up kindness at the moment - it is such a comfort. This damn condition has made me all needy. I am tempted to post everyday for that very reason but I worry I write the same things because I can't think straight and then I worry that people will think I am not valuing what they have written before. (Arrrggghhh rollercoaster of worry 🤣...... but that is also a new thing for me thanks to thyroid I suspect....never was a worrier before).
I remember those feelings so well... This place is not perfect - and it can't be - there's a lot of people are feeling unwell here - but there is such comfort in finding a community where you feel heard and understood. It has helped me a lot to be here. Do post as you need - and hopefully folk will be patient and understanding as they ought with duplications and the like ... x
Worry and anxiety is definitely a thing and I don’t think it’s always the meds or the thyroid making anxiety - I think it’s living with the very real fear of ‘how the hell am I going to manage this and this and that…’ and ‘will I ever get better and back to normal - and if not…?’ I’m on my own with this. My dog is great with his kind eyes but has no advice! I can’t talk to my kids with their busy lives or my mum with her health issues or my friends who just don’t understand. Everyone at work is under pressure and if I’m not working fast it falls on them. So - worry worry worry… nowhere to go with it. Keep posting - it’s good to share for others too because I reckon a lot of people feel very lonely with this. Big hugs to you x
Think you just climbed inside my brain there for a minute. And that is why this platform is such a miracle. You guys get it instantly. Virtual handholding - it is a lifeline.And think you are dead right re the anxiety thing. Never been an anxiou person so it feels like having to learn a new skill.
Ah I’m quite skilled at worry - always been a worrier. But in the ‘old’ days I would use the worry to catapult me into action. Now all that happens is that I worry and then end up staring at a blank wall for two hours… it’s ridiculous! 😳 x
Yes to all of this! x (actually that was in reply to your first comment - I didn't see the 2 hrs of worrying bit! That's not so good! I have recently bought myself an egg-timer for this sort of thing. If I know I might get lost in an activity I give myself one turn -15 minutes - to do it. I can extend it if I want - but it means I'm in control. Works for worrying - and social media use too! It means I can do whatever it is - but not too much!)
i do have words of experience , but you may not like them. But they are sent with love, so i hope you don't want to smack me after you read them.
When i was feeling as ill as you, i had no idea what was causing it or that it could ever get better. So i eventually accepted that i had to change my life to fit my energy and make the best of it. So i moved to where i could keep the kids warm by pushing a button on the wall, rather than chopping wood , where water came out of a tap rather than fetch it, where the roof stayed on in a storm by itself without having to tie it down, where TV would amuse them in the evening instead of reading to them, where i could use a council house as a free workshop to earn a little money occasionally instead of renting one and making a load of money filling plentiful orders,
So what 's my point ?
It was much easier to deal with having no choice in the matter and just having to accept it as something i couldn't change, than it would have been if i knew it could be improved by something that someone wouldn't let me have yet.
Your thyroid is taking you on a ride you didn't sign up for, you have no control over what your TSH will say next time it's checked , and to a very large degree your fluctuating TSH /fT4 level is in charge of how soon you will get a diagnosis and treatment.
So adapt and improve the things you can , accept the things you can't change, be glad you do have a hopeful private appointment on the horizon , and be supremely glad you aren't doing this ride with 3 small kids in tow... in Kabul.
Don't want to smack you Tattyboggle, rather I'd like to hug you . Thanks for the reminder that fighting yourself takes energy and leads to frustration that saps even more energy.....at a time when energy supplies are already at zero.Thanks for the reminder that there are times when you just have to adapt and make the most of things .
I am fighting myself as much as the system which is idiocy.....failing to accept my limitations. I have so little control over so many aspects of my life right now that one thing I CAN choose to do is be kind to me.
Words of wisdom indeed Tattyboggle (and great name btw)
I’m so sorry to know what you’re going through. The lack of care in the medical system for thyroid issues is shocking. I also went through years of feeling there was no end in sight as my GP would diagnose everything but my thyroid problem and I was getting more and more ill.
A friend of mine who saw that I too was fighting myself gave me a copy of a book called The Power of Now. I confess I thought it a bit woo woo to start with but I did read it and it did help. It made me realise how much energy I was spending in wanting things to be other than they were. It helped me build more patience and self-compassion, so that I stopped beating myself up for having to rest more etc.
I haven’t stopped fighting the system though. In the end I went private and was immediately diagnosed. That’s not to say things were immediately better. But at least I was then able to start navigating my way to health with some support. I found this forum at about the same time.
Don’t give up. Take life a day at a time. You will get there.
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