I would LOVE to hear stories of how your lives changed for the better with good management? For instance, having the energy to do sports or hobbies that you had left behind, new vitality flushing into your relationship, changes in jobs or outlooks on life.
As someone just coming to terms with hypo diagnosis and starting NDT unsupported by GP, I have high hopes of resuming my health, what i considered to be my identity, sunny disposition, my business, a relationship, income, love of life and hobbies etc!
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Everyone is different. I am now well and it's thanks to Thyroiduk.org whose wealth of info led my along the path to good health (before this forum began). Thankfully also to two doctors I saw - one who resigned his licence due to the pursuit of the authorities for daring to diagnose and prescribe for patients as he'd done for years and he also had hypo himself, so understood fully the problems.
The other doctor, a virologist, about the same age as the doctor above and both trained as a medical student on the symptoms and 'look' of patients, i.e. were they cold, was temp low, was pulse low etc etc and prescribed a trial of Natural Dessicated Thyroid Hormones. There's absolutely no danger if the person doesn't have a thyroid hormone problem.
Both were hounded in later life because they refused to follow the guidelines if patients weren't helped to recover. One died of a stroke after quite a few appearance before the GMC which his patients attended too and because he hadn't done anything wrong he was always discharged. The other is quite unwell himself in the last few years with another condition.
I am now fit and well and have energy. Take my hormones first thing and I am unaware now that I have any illhealth problems.
It's when you discover that the GPs don't understand/know, neither do many Endocrinologists and people have spent money on a private consultation they could probably ill afford to be very disappointed.
Whatever you decide, slow and gradual is best, being aware of your body and symptoms etc. and I'll give you a link from another doctor who was an Adviser to Thyroiduk before his early death:
There's absolutely no danger if the person doesn't have a thyroid hormone problem. - thats so good to hear as my doc scared me off it when i self medicated before AND IT WAS WORKING but my TSH went below range (as you would somewhat expect).
So what are some of the real life tangible things you do now, or ways you think that have made a big difference? What are some of the things you could not have imagined doing/states of mind that you can access now you are well?
Im okay without the doc. Luckily I am in integrative health coach so have a fairly good handle on testing, nutrition etc. The one thing I didnt have was people to bounce my thoughts/results/feelings off of.
And i also dont have real-life good news stories. People saying I feel bright which means I make social arrangements and have friends and a relationship! .... i stopped dieting and love my body, my energy came back and I got back to work I now.....
I guess this says more about what I am wishing for. I LOVE TO BE INSPIRED!!!
And that is why I so value this group and your response Shaws. Seems to me you make a big contribution to this group so thank you
For a start my husband has had to call the ambulance when I had severe palpitations (on levothyroxine). I did have palps before being diagnosed as well but the ECGs always were 'fine' - the problem was I wasn't fine. I felt awful.
Now I feel I have normal health, do everything I did before and every morning I'm glad to have dispersed with the pounding heart, pain or anything else that bothered me.
It's the feeling of being so unwell and doctors telling you that it's nothing to do with your thyroid - your tests are fine.
It's only when you are 'really' fine that you realise their knowledge is nil.
Well I will start with....last time I took thyrogold I pooped everyday!!! (I am back on it with high hopes). At the same time (chronologically, not while I was pooping!) I went for a walk for an hour without dreading how I would get back, and could breathe and felt happy! I woke up with a clear head and didnt need anything more than water to bring me life!!!
omg a long list but the main thing is to get through the day without any anxiety symptoms and feel nauseous all the time. I have to then conquer my agoraphobia but I don't think it will be as difficult as last time if the symptoms go away. I just want to wake up feeling normal and do normal things like everyone else but it feels so far away
Hang on in there! I get very frustrated too. As long as I do NOTHING I feel fine! But as soon as i try and work like a normal person, move, and find some pazazz i know im not all there! Bug hugs to you I hope you can find something that works out and me too. From what Ive read about hypo and mental health, i would not be surprised if that does help the agro a LOT! Take care
PS just saying but I teach a lot about wants in my health courses (not selling I promise you!). And I notice that your response is all the things you DONT want - eg agro, anx, nausea. The closest you got to what you DO want is NORMAL THINGS! So if you want to, start telling me about those normal things - what are they? How will you feel when You do them? Im not saying that DO WANTS magically make everything better, but it gives a refreshing perspective that can be visualised and imagined! x PS, im only playing with words so hope no offence.
Ah thats beautiful Jefner. I really hear you. I have so much hope for us. I know its a long road and its tiring. I want all those things for you too and I will everyday think if all the people here, and as I wish stuff for myself, I will wish it for you too
Yoga swimming walking olive-picking, relationships with humans and animals YAY!! That is AWESOME!!!! Me want me want!
I teach yoga too Marz and currently cancelling lessons as I have nothing to give and imploding in a newly diagnosed 'oh my god no wonder i feel this way' kinda thing. Its not that im down, but mixed feelings and like I want to shut the door and lie down for a week, without mentally torturing myself about it. I dislike living with epople that are working and functioning as it makes me feel SO guilty about my lack of participation in life!!!
If the thyrogold doesn't do it then i feel very screwed as no income, i am in a new town with no proper friends. I moved to UK from NZ to see my fam and get better. Ive seen my fam 3 x in 5 months as they live 3 hours away and cannot drive, and my lessons mean im supposed to be here every other day. I feel like calling off my lessons here, giving notice on my house, relaxing for a month while the TG kicks in (hope!). And then hanging out with my folks whilst I prepare to move back to NZ. Its like I cannot handle ANY kind of pressure on me at the mo, not even to teach a few yoga lessons!!!
I have a vision of travelling with my biz, houesitting, running womens workshops where I go, and online, housesitting (as reduces need for reliable income!). I actually achieved this before but undiagnosed I never had the energy to make the biz work. I was always knackered! Sorry for the rant!
Any sound yoga-woman wisdom Marz?
How many times can I abandon a life? In the past its been because I was not feeling right and couldnt make things work. And now its because I dont want to be here when Im healthy. I had other plans for myself!!! Gahh! Thanks for your inspirations anyway! Much love.
Ha, so my question is, Marz, can you please make my life decisions for me?
Hi Claire, I'm really enjoying this thread you've started. I too am a yoga teacher but not recovered like Marz so I do a lot of pacing (taught to us very well on an ME clinic - have you ever done the chart with different colours? It's very, very helpful, as an example, one lady after completing the chart for two weeks noticed that on days after she relaxed watching the TV in the evenings, she was much worse).
Well, the best I can say is that : I'm still alive! Left to themselves, without the intervention of internet, my doctors would have killed me long ago! But I doubt I will ever get back to being the way I was before all this started, before they started mis-treating me, and under-treating me, and pumping me full of drugs I didn't need, whilst at the same time denying that low nutrients had anything to do with anything. Thank god for internet!
On a more positive note, since I started self-treating, I've lost all the weight I put on whilst being on the wrong form of thyroid hormone replacement for years - whilst at the same time being told it was all my fault and to eat less and exercise more...
Could go on but I won't. Sorry, mine is not a brilliant success story. But I am grateful I have come back from the almost dead. Which I was. So, I suppose that is some sort of success...
YAY you are alive and lost the weight! It must feel much easier to get around without the weight, and a sense of validation to know it was the mistreatment not you! Thank you for sharring your success greygoose and I really hope you make other gains. I could say that one of your successes has been supporting other people on this forum. You have certainly shone a light for me a few times in the last few say whilst all this is a new experience of disbelief and slef-imploding and almost wanting to give up (not darkly, more like go sit in a cave for a month!). Possibly you didnt know before that you would become a sanity saver and internet-hand-holder/guide for people like me. So thanks for sharing. I am also very glad you came back this far.
Thank you for your encouragement. But, might I just say that losing the weight wasn't as phenomenal and life-changing as people who don't have to lose weight might think. I absolutely hate it when people say 'I bet you feel better for it!' Because, no, I don't. The weight gain was just another symptom among many, not the cause of all my problems. And I didn't even notice it that much, except when buying clothes! But it still doesn't 'feel easier to get around' because it wasn't the weight holding me back, it was the loss of muscle strength caused by many years of low T3. And that hasn't changed. In fact, it's even more difficult for me to 'get around' now, than it ever has been. I really, really didn't want to stress the weight-loss, because it's not that big a deal, considering everything else that's wrong, but it was just the only positive thing I could think of to say. I think people put far too much emphases on the weight and the losing thereof, and I don't think that's healthy. Sorry, but that's just the way I feel.
So, let's just forget the weight and say... I've got my brain back! lol
Brilliant! I really appreciate you sharing that as I think its so important to have an understanding of other peoples experiences. I dont wanna be ignorant and it makes total sense that of course, with thyroid, it doesnt matter the size of your body for getting around. Thats so obv and i cant believe I didnt think of it!!!! having your brain back sounds like a great success Thanks so much for responding.
Woop woop thats fab nomad!! Climbing Snowdon what a dream! me take your dream...I want to do some overnight tramps in New Zealand someday soon. Thanks so much for the inspiration. So great to hear it can all be done x
Well, I haven't got a success story to tell yet, but I'm just about to try T3 after not doing particularly well on NDT (and never being offered levo as the doctors say I'm fine) so what I'm really hoping for is:
(a) to be able to go out for long walks again in the beautiful countryside here in Yorkshire
(b) to be able to sleep well every night and wake up feeling refreshed and ready for the day
(c) to be able to think straight, concentrate and get rid of this horrible memory loss that has me struggling to complete a sentence sometimes
(d) to set up a couple of ebook publishing businesses I've been trying to set up but had to put on hold because I just didn't have the energy
(e) to enjoy life with my wonderful husband now he's retired
About 3 years ago I had dreadful insomnia, brain fog...somehow I struggled thru the day at work but would come home totally exhausted. I spent most of the weekends and evenings dozing on the sofa. Everything felt like too much effort. I had been to GP several times re not sleeping. Luckily this time I went, saw a locum who made me have a blood test, TSH way high! I am fortunate as Levo works for me, and gradually over the next few months the brain fog lifted, I slept better, and started living again. I now enjoy work so much more and am able to get involved in extra projects etc. At home I can cook, clean, do all those normal jobs that had felt too much. I enjoy days out, have started running again and generally just live my life. I appreciate being able to do all these things SO much more now. I feel happier and less moody. If I take my Levo and vits regularly and don't burn the candle at both ends, life with Hypothyroid can be awesome. I hope find some meds that work for you, and that you feel better soon.
Wowwwee that is super news!!!! Its a relief to hear that others find themselves unable to cook and clean and do anything other than what is absolutely demanded - for many years I have been work on my psychological emotional self thinking it was all self inflicted!!! Days out, running, happier, extra projects. So inspiring and soothing to hear your success rustyspokes. Thanks so much for responding x
Gps are unsupportive. They dismiss you as depressed which is not the case at all.
I join you in your high hopes. I have them too as do many people on here.
I also haven't got a success story to tell yet as I'm very much a work in progress. There is one thing I'm really looking forward to doing when I fell better:
I would like to be able to sleep well, on a regular basis and without any sleeping aids. Just like I used to. It don't sound like much but this is exactly what I'm longing for...
Oh, I'm with you on that, Kitten. I've forgotten what it feels like to have a good night's sleep and feel refreshed on waking. It would be awesome to get that feeling again!
I'd like to share some good news that after 7 days COMPLETE REST. .not even trying to make myself meditate or read or anything. .....and 7 days thyrogold 150mg. ...plus feel and b complex. ...today I have some energy! I had a walk for 40 minutesand didn't need to sit down during it. Later in the day I danced for 20 minutes. . I haven't felt like dancing for months! ! My mind is different. ..upbeat. we all know there's ups and downs on this journey I'm just hoping for sustainment of this! ! Teaching yoga and hiking may soon be back on the cards! !!! Xxxx love xxxx
Today i upped ny dose to 300mg om thyrogold after 8 day on 150.
Last time I took 150 for 2 weeks only and started to get fatigued again so I'm being preemptive, hopeful ,impatient but also, importantly, intuitive.
The day after my last update with walking and yoga. ...I couldn't do anything for energy! But today a 45min cruisey cycle and reading and 30 minutes yoga. It's hard to believe I need to celebrate these things!
Good news in the last 3 days I have cooked more. ...because I felt like it! ! Chicken broth, steamed veg simple things.
Also I have carried on pooping which is a major win. And stopped dairy and grains just yesterday. I woke up with no brain fog yesterday and for me, grains causes 80% of that morning heavy head achy dull congested skull feeling. I have a new sultana obsession which can't be great for blood sugars. Ho hum never mind!
More good news? ?? Well more next time I hope but what you don't read much here is libido mine seems to be coming back!
I'll keep adding successes. I have unbelievably pooped every day! !! I am taking two weeks off work total and I started thyrogold on day 1 of days off. On day 9 I upped from 150mg to 300mg.
Today I don't have energy for much but then I also day 3 of period so that's normal perhaps? I grabbed the wrong container this morning and only took 150mg thyrogold! Will take another 150mg now.
I have made arrangements to get back to nz rural surrounded by mountains pasture and sea with a place to myself with a dog and chickens for 2 months with no pressure to do anything except get well.
It may sound like I'm very lucky and I am, butto do all that takes me house deposit and so it was a big choice I hope pays off.
Apart from the pooping not much has changed but I'm stoked about that. It proves to me that low t4 and t3 were the cause of chronic constipation.
I actually hope it's hashi's and not a pituitary problem. Ultrasound will tell me. I will look back on this entry in months! ! I have danced again! ☺☺😀
More good news? Day 23 Thyrogold, 150mg night, 150mg morning.
I have got my blood pressure up from
80/50, 114bpm (standing postural hypotension with tachychardia and arythmia), to 113/64 96bpm standing.
Up from 90/60 and 48bpm sitting, to 104/68 and 75bpm (sitting) .
The hypotension was one of the limitations to working, so I hope I continue to find my correct dose. Still the arrhythmia 50% of readings, and some tacchychardia. Hope it settles down or ill get an ECG.
I am also having a regular bowel (with just a little Mg and a coffee) and hope to leave the coffee behind soon!
I went on a 4 hour cycle the other day. Great. Burnt out now but never mind.
Getting a pounding heart at night if I dont take a second 150mg dose of thyrogold. Guess that means im officially physically reliant on meds.
I am positive that I am returning to NZ and will do my best to work with patient advocate groups to raise awareness - in both the community of patients and with the doctors and nurses.
My heart is breaking to leave my family and all that I have started here. Life. No figuring it out.
I'm updating with more good news . after 6 months of puzzling I am finally near a decent ndt dose ! I have been able to think clearly enough to write a few pieces for work ! a glimpse of normal life and maybe even an income wahoooooooo !
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