I have been unwell now coming up to 5 years and now have Hashi's...I tried all the usual ways to get better, T4 then NDT, then T3 then T4, T3 combo. Being on 'T4 only' made me VERY unwell as my body was not converting, last year was the worst of my life. I had to give up work, had pretty much lost everyone that was close to me, I would spend up to 4 days house bound, could just about manage a 5 minute walk to the shops, that's not including all the aches and pains, low in mood, angry and ready to give up and all the other numerous symptoms.
I kept hearing 'gut health' is important but I like so many just wanted a pill that worked and to get me back to how I used to be...I removed Gluten end of last year, I then started looking at other aspects of my diet, I also removed sugars,dairy, tea, coffee, booze and went back to the basics of cooking, nothing at all processed. I did this for several months and it was very tough but not as tough as the life I did 'not' have anymore prior to the massive change in my eating habits.
After a while I started feeling more energised, less aches and pains, at this time I was on T3 only, my mood started lifting I wanted to start doing things again!
Fast forward to now....Yesterday I travelled to Brighton, I had my hair cut along with lunch, I then walked the 30 min journey to my hotel, got ready to go out meet friends for drinks then I went to see alive band stayed up till late and still managed to get up bright and early for my scrummy breakfast and then had some retail therapy before my journey home this afternoon.
Maybe it does not sound a lot and prior to becoming unwell this was the norm for me whilst holding down a busy stressful job.
Its totally amazing that a year on how my life has changed by changing what I put into my body, I am now well enough to start working again, only a few hours a week but its so nice to feel human again.
My diet is still gluten free and I still cook from scratch, I have introduced foods back into my diet and everything in moderation, my body appears to cope with this.
It is not a cure as such and I know I will never be the person I used to be but I am lot closer than I have ever been. I am no longer existing but what I have learnt is that there is no quick fix and changing your diet is very tough but the payback is 110% worth all the effort. I have also started to lose weight and have lost my bloated moon face, still along way to go but anyone that knows me have all noticed the improvement to my health and vitality.
I would say to anyone please look at your gut health, as for me this has been what has gotten me back onto my feet, the T3 and supplement also help, but T3 alone was not enough for me.
If only 1 person reads this and feels inspired and can feel even half way close to how I feel now it will have been worth posting this. I want to say also that I have possibly underplayed the hellish journey I have been through but I know a lot of you will understand and I do not want to dwell on those 'lost years'...
Best wishes to you all....Deborah
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Deborah, it's wonderful how you've improved your health and very inspiring. Thanks for taking the time and trouble to post, it will inspire and give hope to people who are newly diagnosed or still struggling xx
I truly hope it can inspire people as its been a really rough journey but coming out the other side is the most amazing feeling, at times I truly thought I would never work again, travel or enjoy my life like I am starting to once more...
So pleased for you,thank you for sharing your journey to improving your life with us all,could you let me know what supplements you take now,as you mentioned this
I do not take that many, only selenium with B1 and slow release iron along with Vit C. Had previously been on B12 injections and high dose Vit D due to poor absorption, but things are much improved now due to cleaning up the gut...Had tried so many over the years too many to mention!!!
Congratulations Deborah! you have had such tough time but have come through it and its great to read! thanks so much for sharing your experience with us and I wish you well for the future xx
Awwwwh Thanks Sue...I though it would be nice to put a 'feel good' post up as I know I have posted at quite dark times through out my poor health as do others and it can get quite over whelming... This site and some of the folk on here have also been fantastic.
Is it therefore possible to summarize that junkfood makes you junk, T3 isn't magic and rehabilitation takes time? I find that some people think that T3 will be the magic pill that will levitate them from their beds and make them superhuman. I know it doesn't. Rehabbing from thyroid problems takes time and EFFORT.
Not sure how to read your response without getting a tad annoyed. Maybe its lost in translation who knows but I tried to write it whilst explaining MY journey through this illness, I did not say that T3 was a magic pill and specifically pointed out in my post that prior to the dramatic changes it did not appear to do that much for me but having made the gut changes it seems to work a long side those changes for me! I did not mention junk foods as such as I never really eaten them, but I meant highly processed foods. I cook from scratch now with natural foods.
We are all different and I have been very unwell for a long time and this has not been an instant quick fix for me in any way, shape or form. I have been posting on here for a few years now, I notice that you have not been on the forum that long so would not be familiar with me on here. This is now a way a life for me and always will be if I want to be able to function, I still suffer but no where near like I did. I feel better and wanted to give hope to some others on here that might have gone through something similar to me, whilst being more than aware that we are all different. I know I used to get quite sad and down reading about peoples pain so wanted to say a thank you and post an update as I do not post on here that often.
You entirely misunderstood. I fully support what you did and know, from my own experience, that everything you did is the way to get well. As you explained it so well, just taking thyroid meds won't made a person regain their health without everything else you've done. It's like putting petrol into a car that has no spark plugs. And it's not even that simple, because the body has to regenerate and get strong again.
So once again, thank you for making it so clear what it is you needed to do to recover your health. I'm sure many people reading what you wrote will take your experience and be inspired to follow your lead.
Arrrrrrh I understand now...Sorry I did misunderstand your response!!
I wanted to be as clear as possible which is hard to do when there is so much to say to so many people at different stages of ill health. Yes that's what I am saying that its not as simple for so many of us as just taking a pill...My Mum became unwell 20 years ago with an underactive thyroid but she was given T4 they eventually found the right dose for her and she was/is able to continue her life as normal ( one of the lucky ones), sadly this was not the case for me.
I would love it to inspire some people but it does require effort and when you are lacking in energy the last thing you want to do is make a radical change to your eating habits BUT its is worth it...I have said my piece and people will take from it what they will. This is such an awful debilitating much misunderstood illness and people just look at you when you try and explain, and they always seem know someone who has a thyroid problems who takes T4 and carry on living their lives as 'normal', so it makes even harder for those of us who do not get on with the limited tablet choices available to us.
This a good site and I think it has helped many people with all the knowledge floating about. D
Agreed. I'm a thyroid veteran. Since about age 17 and now I'm almost 57. I wish there was a forum when I was young but there wasn't. When people like you post the details of how they've recovered their energy and their life, it's really important for people to realize how much is involved in truly getting better.
Wow so you really have been there seen it and done it....Tough times for you. How are you now?
Yes it is important that people know that they can possibly help manage their health in other ways but there is no quick fix and it does not always mean success but anything is worth a go when you hit rock bottom, I knew I was running out of options fast and could not stand what my life had become and feeling just a little bit better would have been worth it for me, but to get the positive results I have has made it worthwhile. I would say the essence of me is back which I thought I would never see again!
A couple of years ago, thanks to stupid GP lowering the T4 dose, I didn't have the energy to cook. I'd go shopping and feel like I was wading through water. I'd only buy vegetables that wouldn't go bad if I didn't have the energy to cook them. There's only so much butternut squash a human can eat. LOL! I work four days per week and spent the remaining 3 napping as much as possible to somehow get the energy to survive the next four. Didn't work out too well. Was exhausted by day 3. Dead in the water by day 4.
Now better. On T4/T3 combo. But it's not magic. I've got days when maybe the night dose is not absorbing well. (food in stomach, I get home late some days). At least I'm not driving like I'm punch drunk at the end of a work day. Honestly, I don't know how I made it so far. I was on the right dose back in my late 20s early 30s. And then had to find a new GP. Dingbat lowered the dose (TSH too low) and then lowered it again sometime since 2000. Menopause then did the rest. Suicide became a working solution.
It's really important for people to know that they don't have to agree with dose changes that a doctor decides upon. If I had known that years ago I'd be in good shape now. Instead I've sustained connective tissue and skeletal injuries and consequent arthritic changes which will plague me until I die. Or being optimistic, until I retire. I wish I could bold the first sentence! This is why this forum is so important. I've learned a lot.
That sounds rough but I completely understand I am sad to say...And when suicide becomes a viable option when you would never think like normally you know there is something very wrong. And then throw in the menopause what a deadly combination.
I have become very forward in offering my opinion/viewpoint to any sort of health officials, and am even teaching my Mum that the blood results are not the be all and end all its more important how you feel and her Dr has been tweaking her thyroid meds recently and its sent her off kilter slightly, but luckily Mum's GP is accepting this which is a good thing as my Mum is scary when she is angry!!
I am sorry that you have other health issues as a result of this illness as I do and no doubt many others, I have kind of learnt to live along side the ones I can, but its sad to see your body fall apart at a far earlier age than it possibly would of.
I have been self medicating for a few years on and off...But have been self medicating now the past year and will continue doing so along with healthy eating regime, I feel the best that I have felt in such a long long time...
Its good that people have somewhere like this with some good sound advice.
It's alarming when someone finally has to say 'I don't want to live anymore' before getting an endo consult.
But the endo was fooling around with the dose. I'm self medicating and latest tests indicate levels are perfect. So much for endos. She has the results but her office neglected to contact the pharmacy to renew 'that' prescription. I'll be seeing her again in December after another set of tests are done. Then we'll have to have a little chat.
My blood pressure was also going bonkers. If I was moving around it would go to 150/100 and after sitting still for 20 minutes it would be 115/65. That's thyroid too. The heart was struggling. I'm just hoping like heck that the heart is going to recover from several years of palpitations and whatnot.
Chronic fatigue syndrome my ar......
It's secondary hypothyroidism, not primary. This was determined back in 1986 but the records were not transferred (I guess) even though I'd filled out forms to have them moved. So now I'm trying to get them from the hospital where the testing was done. Crossing my fingers because current endo seems to not believe this. She was aiming for a TSH of 1.0 when at that level I'm thoroughly hypo.
I think if we all sat down and documented all the mistakes that have been made to the detriment of our health I know that I would sit and weep for a very long time.
The time spent fighting these mistakes along with so many other things is soul destroying and incredibly hard. I try not to dwell too much as I would go around the twist, I became so angry and it was precious energy that I could ill afford...
But I feel I have taken control back over this illness but it has not been easy but it has been worth it.
Onwards and upwards and I wish you all the best in your health Gabkad...
It was very close to paleo and then I went on the harcombe diet which I found a bit more user friendly and fairly easy to manage in the early changes, it also address's candida. Now I probably do follow paleo and the harcombe combined, and introduced foods back over a period of months. I did not want to be seen promoting a diet as such but it might be worth a google...Best Wishes Deborah
Thanks for sharing and I totally agree gut health is a big part of thyroid health. I have improved things a lot with gluten and lacto free diet and got rid of TPO antibodies. Hope you continue to improve.
Hi Crimple yes gut health is really important, I am so glad that with changes to your eating you have improved. Trust me I would not put myself through all of this if it was not worth it...Continued good health to you D
Wow, how many months did it take? I recently changed my diet in the same way. It's only been two months with no real outcome yet. I am also exactly like you in terms of how my life has changed...our stories seem to be similar except that I can't tolerate thyroid meds and am looking for a herbal remedy so that I can resume my life!
vienna, there are no herbal remedies for hypo. If your body lacks thyroid hormones the only way to make it well again is to replace those thyroid hormones in one way or another. Herbs cannot do that.
The thing to do now is to find out WHY you can't tolerate thyroid hormones (NOT meds). Is it an adrenal problem? Is it low iron? There has to be a reason and you've got to find it.
I have been GF a year or so now and feel I am reaping the rewards of going GF this past few months, and as for the other eating plans it took a good few months for me to suddenly realise that I was feeling better, but it took a lot of hard work and felt like suffering and many grumpy days and then it kind of just fell into place really...I would give it longer and look at tweaking things here and there. Have you tried NDT?
You are truly an inspiration. I am just about to lose my job (which is also stressful) through ill health and fighting with health professionals to get some help, but I guess it is down to us in the end and you have proved that there is a light at the end of the tunnel. bless you. Joolz.x
I am really sorry to hear that and I can totally relate to you, its just been one battle after another and when you have to give up work its just awful if you have always supported yourself, I felt so vulnerable and had so many battles with 'the system' as such and its the time when you have the least energy to take it all on, but some how I did but very dark days indeed. I never ever thought I would be able to work again and start to do all the things I enjoy, I even managed to go to Portugal for a few days away which was brilliant to be able to do that.
Stay hanging in there Joolz... All my best to you Deborah x
I hope that you are doing ok over there in France...I take 37.5 micrograms of T3 a day, 25 mcg in the morning and 12.5 mcg late afternoon and that seems to be just right for me...
Well, I'm not too bad at the moment, thank you. Still having ups and downs, but getting there, I think.
That's not a very high dose, is it. I would be bed-ridden on a dose that low! lol Just goes to show how very different we all are, and how it's impossible to have a 'one size fits all' protocol. No protocol ever could!
Anyway, it's fantastic that you have found the dose that suits you.
I am glad that you are getting there Grey, there will always be ups and downs for sure!
I suppose the dose is quite low I was on 50mcg but had to lower it after my eating habits changed as I needed less...I have never really thought about it being low or high because it is what works for me and that's all that counts at the end of the day. I am still not 100% where I want to be but I am a damn site nearer that this time last year.
Thank you for you support also over the time on here and I hope the ups become more frequent for you than the downs
Thanks for you reply and support over the past few years, like you say its feeling that life start to come back to a body that for me was pretty much useless. And getting my little train to work is fab I never thought I would ever say that about commuting but luckily its only a short journey...
I hope that all is good you end...
Best wishes
D x
Have only just picked up your post......such super news.You have worked so hard to help yourself and now have your just rewards........ Go out there and enjoy life as much as you can Missdove you deserve it xx
Awwwwwh thanks Marfit, I must say it is great to feel like I am 'living' again and I had pretty much written myself off but the changes and what did feel like hard work is so worth it now looking back.
I am still experimenting with my meds, looking for what is best for me.At the moment on T4/T3 combo,but have also bought Armour.Not sure about self medicating though so jury still out.!!
I think that the diet is such an important thing too so admire the way you have persevered with that.I have no problems giving up cake,pastry and biscuits and don't plaster my food with commercial sauces so am virtually gluten free.Sugar is not a problem either.Am so used to going without that anything sweet now tastes sickly.However,dairy will be hard for me to give up.I do try to concentrate on protein,vegetables and fresh fruit and soon know it if I cheat.(muscles and joint pain)
You mention taking a supplement......I'd be interested to know about what you take.
It is certainly a difficult journey isn't it ? so well done to you.x
Sadly there is loads of tweaking that goes on with this illness, as one size does not fit all...Your diet sounds pretty fab already and yep I know if I have crossed the line, its amazing how those aches and pains creep back up on you very quickly. I know there is more out there for the dairy free people but it can be so pricey but it is much better out there in the market place nowadays...I also tend to keep away from the 'freefrom' gluten free products as the gluten is replaced with other nastie's...I still crave toast, but have survived all the other cravings and have 85% cocoa choc if I want a sweet fix!! ;-))
I take selenium and B1, I have been known to take B12, I also take slow release iron along with Vit C...I would rattle if I took everything that everyone recommends so just stick with these for now. My GP is just there in the background to keep an eye on levels for me as and when I need, she has seen the change in me and is amazed and so happy for me, she is my 5th doctor! Got there in the end!
I have been on other things over the years as my absorption was terrible, and had to have injections of B12 and a really high dose Vit d, along with other things I tried but have noticed the change in my absorption and even had to lower my T3.
It can be a long journey but hopefully we can all get there someway somehow...D x
Hi there again......you really have been on a difficult journey.
The added sorting of vitamins etc to get up to our optimal levels is a real pain too at times isn't it?
I find repeatedly that I take a supplement for a while and then my body seems to react and I'm all achy......I leave it off for a couple off days and all is well again.I added in B12,folate and Vit D and then when I had my blood tests the registrar at hospital said you can stop taking that folate.....your'e at toxic
Level! And yet at my previous tests I was below range.
I recently started on GoPo Rosehip capsules to help joint pain..........marvellous for a few days walking almost normally.
Then suddenly achy body again.......stopped them for two days .......pain gone.I had strayed from my diet for 2 days and ate quiche( pastry) and following day cod and chips in batter (because we'd had a busy morning running around delivering things and hadn't thought about meals) and next day ....Oh boy ...I felt awful.
So the lesson for me is not to stray from the basic diet that I know is right for me.I think that is going to be the real answer.
Anyway.....nice to swap notes with you and hope you keep well x
PS.......Is Edvard Munch's "Scream" still appropriate ? ....you sound as though you are in a much happier place now xx
Wow Marfit that's a total pain that these things work for a while and then you go back to aches and pains...Clearly your body is not happy with something whilst taking some of these supplements.
But yes you are right we are soon told by our bodies if we deviate from the diet that works for us, and it really is as simple as stick to it but sometime the real world gets in the way. I still get caught out ( so buy my default setting fruit a banana) or get a bit miserable. I was recently invited to a child's birthday party at the last minute and as you can imagine I sat there with a plate very different to everyone else's in the room, a few chopped peppers, cucumber, tomato and some hummous dip!!! Someone suggested having some cake as surely 'a bit will not hurt', I politely refused :-S
Ha ha you are so right about Mr Munch's The Scream, that made me laugh reading that as you are spot on...I will hunt for a more apt picture ;-)...
Nice to catch up with you too Marfit...Continued improved health to you and my best wishes D x x
Thank you for taking it the way it was meant........after I posted I was worried you might think It was rude of me.......that's thyroid lack of confidence !!!!!!
Hope you might find something colourful and uplifting that makes you smile and reflects how you now feel. Margaret x x
It really made me laugh, especially as 'the scream' really summed up how I felt a lot of the time...I must say that's the one thing that my thyroid did not take away from me my confidence!
Watch this space for a new brighter picture...Take care Margaret
Thanks you...Well I can honestly say that I did not think it would be me, but it can be done hopefully for you and others, we are different but I feel jut health is a massive key to helping us support our poor thyroid health. Are you looking into gut health? D
Well try it sooner than later if you can there is a lot to take on board,but its not as hard as it first seems but you have to be in the right mind set for it....Good luck!! D
Thanks miss dove. Are you still taking t3 in addition? How long have you been taking it and how much do you take if you don't mind me asking? It is just that I have been taking it for a week now and starting to feel better, but I am hoping it is not just a "temporary reprieve"I have so much more reading up and have to try to find a decent medical practitioner close to me, but at least it has given me the "step up" and the energy to investigate... Thanks again for you lovely post and long may you continue to be well.
Been on T3 only for just over a year now, and yes I am still taking it but have gone from 50 mcg to current dose of 37.5 mcg. I felt that the T3 did the for me, gave me the step up to be able to function better but clearly there was still something missing and the final key for me has been addressing gut health...
Good luck to you also on your journey, its early days for you so hang in there...D
Many thanks for posting this, Deborah, it gives hope to all of us. I've just started my NDT journey. I'm feeling a little improvement - but it feels like there's still a very long way to go. I guess looking at diet might be my next step - but it feels such a big step (I have to cook for my husband too and he likes all kinds of processed foods and lots of it ). It will take me a long time to get the willpower to try it, but your story inspires me to try to get to that stage. Thanks!
I would say diet is the next thing for you, it is so worth it and will be for your husband when he maybe gets 'you' back...Its worth cooking things in batches as well so you have things there to eat and do not have to go through the process everyday, but there are ways and means...You can sill make scrummy food that you and your husband can eat together...I really cannot say how important it is in every way and people had been telling me over and over but it fell on deaf ears, but I wished I had tackled diet whole lot sooner, and just maybe I would not have lost a few years of my life...We only get one shot at this life.... Good luck :-)))
Thanks for responding Sparerib...Its nice to hear that it has given you a warm feeling :-)) I love your little sunshine face by the way.
And yes I do hope it will continue and maybe inspire a few people who read it...I wish I had had not ignored what was staring me in the face, but hey its not always how quick you reach your destination its the journey and then eventually arriving!!
I removed everything at one point and over a period of time I introduced dairy back into my diet and for the time being I appear to be ok with dairy.
Its worth removing dairy even for a week or so and then trying to introduce different dairy items every few days or so to see if you get any adverse symptoms but it could also just be the yoghurts and also depending what ones you eat and what's actually in them...
Thanks, will give this a go. It's hard to know what to do sometimes so will try cutting out the dairy. Difficult really as the yogurts that I think are causing the problems are ones I like! They are loaded with sugar I presume...possibly a sugar issue.
I think that you have answered your own question really...Eat natural its the only way really easier said than done but it can be done if you want your health to improve.
Sugar is also another big issue but then that's why processed foods are a no no, depends how serious you want to get...
Deborah thanks so much for putting up that post. I'm suffering over 6 months have hashis also and am gone gluten free just over 2 months now and taking all supplements to heal my gut. Was doing fine for the past 7 years but things went wrong in April. Im so delighted to read your post its given me all the hope I needed.
Stick with it, its early days for you but over time you will reap the rewards. If ever you need a bit of advice or support you know where I am, if I can help I will...
Lovely to hear, so pleased for you and thanks for posting and not just disappearing into the ether, I always worry what has happened to them that disappear perhaps its a hypo thing.
Yes I must say that some folk on here have been a source of worry and then it all goes quiet, so you do wonder.
I keep an eye out as of course there are always new things to be learnt but do not have the same hunger for knowledge as I used to have as I feel I have tried many things and have now found what works for me, but whilst on that journey you never know what or will not help...D
That's terrific news and well done you for investigating and acting upon your findings. It's really encouraging for others to hear that there can be an improvement in their health.
Thanks Cinnamon_girl....I really hope that it can be of help as I know how tough it is to get started and sometimes its easier to live along side it, but I did not want to continue that way. Hope things are as good as can be with you D
Thank you miss dove for your inspiring story. You've been through the mill and I can recognise everything you say. You've inspired me to take a good long look at my food intake & although I eat healthily from natural foods, I know that I can do even better! I'm struggling again at mo but you've given me a boost. tHANK YOU
Thanks for the reply Signlady and sometimes we all need a little boost, I wish you well and hope that any changes you make help improve your health...Best wishes D x
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). It will take me a long time to get the willpower to try it, but your story inspires me to try to get to that stage. Thanks!
is it worth trying t3?
New here! Thyroid panel results help please!
A question on 'high' dosage
