Thank you to all on HU

I joined HU in March this year after being diagnosed with Hashimoto's Thyroiditis. If I had relied solely on the Endo and GP I would still be on 50mcg of Levothyroxine and feeling like poop. Thanks to all of you I fought for my health and found out that my vitamin levels weren't right (despite being in normal ranges) and I now take all the vitamins I need at the right times. I also made the difficult decision to go Gluten Free and four months on I am in a whole new place. I have energy!!!!! I spent a long time reading posts and thinking there was no way I would ever feel better but I do. If you are newly diagnosed, there is a minefield of information to go through and you need to take it one day at a time and stay positive and fight for your right to feel human again. I wish you all the very beat in your own personal battle. Jlo x

20 Replies

  • Hi jLo

    It is amazing what we have to learn and do in order to recover our health if we have a thyroid gland problem. We would never expect that's what we would ever have to do and that the doctors and Endocrinologists don't always have the answers.

    Well done to you and what a difference it makes to feel well again and gives lots of inspiration for those still searching.

  • So true! I think I know more now than my Endo I have been in a living hell for 9 mths and all blamed on menopause that is a load of crap .. I know :)

  • I have been fighting illness for years now 53 +tax the doctor's almost killed me in 2009 I got up to 30 stone and I stopped all meds and went on a Mission on my laptop to find out what was wrong on my own before my liver died from painkillers

    I started to cut out poisoning like aspartame I was a big diet coke drinker fluoride in water you name it

    Cut down on white things like refined flours sugars

    Started taking vitamins and minerals and apple cider vinegar

    As I learn more about the mess the world food is in its no wonder so many of us are ill

    More recently I have been taking probiotics this has been a fantastic revolution as my constant colds sore throats chest infection s that I suffered my whole life have gone literally not a sniffle in two and a half years !

    Just lately I started to just eat normally again ugh I have been going to coffee shops having non organic milk and gluten and probably antibiotic filled meat and mercury filled fish in the sandwiches

    What a stupid big mistake to think that I could have a normal life

    Back to whole grain non GMO home made yeast free bread or NO BREAD OR GRAINS uuurrrgggh

    It's not fair this shaking inside is utterly intolerable

    HCL is also a good thing I can say that I am now regular for the first time in my life

    My next move is T3 I will self medicate as I have recently read about Wilson's temperature syndrome and I fit the symptoms almost to a T

    Always cold when it's hot sitting on the beach in Greece in my teens in a puffer jacket whilst my friends were diving in the sea and sun bathing

    In the last ten years sweating profusely especially at night omg I look like I fell in a river

    The bed soaked nighty and PJs have to be changed or I get freezing then hyperthermia sets in ... I get this if I stop for a quick conversation with a neighbour if it's not June July and august and I don't have a ski suit on

    I get so cold it Knocks me out I sleep for a few hours feeling so ill

    No one understands my life

    I have never been NORMAL I have always been ill

    Doctors have fobbed me off

    Hospitals have tested me and found nothing save almost NO VITAMIN D

    She's a hypercondriac she's mad she's a nuisance

    Apparently I am as fit as a lop

    But for years I was bed bound in excruciating pain

    My partner is my unpaid unrecognised under paid carer I tried to get some sort of help from the government when the kids used to push me about in a wheelchair it was a nightmare I was a non person always asleep and unable to work

    I was deemed fit ???????

    I had to piss in a caravan potty because most nights I could not take a few steps to get to the toilet

    Through eliminating bad foods I did reduce the pain drastically and stopping all doctors meds

    But yesterday I was back in bed racked with muscle spasms in my back so bad that I had to crawl on my hands and knees and couldn't even sit up to drink my cider vinegar and baking soda

    Shaking inside back with avengance

    Culprit has to be wheat unrefined and probably gmoed

    I stopped drinking alcohol too but

    I thought yay I feel good so had a cocktail

    Bloody Nora I had a neck like the incredible hulk when I woke up sugar overload caused an increase of bad bacteria which got killed by the probiotic I take (kefir) my glands were filled with toxins and like golf balls although to me they were cantaloupes !

    Every day I pray that one day I will awake pain free full of energy and not shaking inside

    My family mock me because all I talk about is my goal to be free from illness and what I have to do to achieve it

    Please God let T3 be the answer to my prayers and that of others who suffer and have suffered their whole lives

    Please just let me have A LIFE

    Because I have always been ill my other ongoing issue has been poverty

    I have amassed a debt of over two hundred thousand pounds to date

    I ve begged borrowed used every initiative possible to do what I have had to do to survive

    I started by borrowing on my home to pay my mortgage lol I borrowed money to pay it right back to where it came from

    I thought it would be temporary and I would get better

    Then I rented every room in my house to pay the increasing bills

    The story gets bigger more convoluted and then I managed to drag three more people into my mess

    My partner and two young children

    They've been so supportive

    Tbh I thought I was going to die so I married my partner and made a big will so that I could at last do something positive on this planet

    But I didn't die and here I am still fighting and getting on their nerves and getting in more debt

    I spent three hundred quid in Holland and Barrett this last few weeks two pots if manuka honey sixty odd quid and that's buy one get one half price !

    Probiotics are thirty pounds I take them and drink laughing goat kefir that's not cheap either

    All that said if I was still doing what the doctor's told me to do and take the bloody poison they dish out Willy nilly I would surely be Riga mortis a long time ago

    We buy chickpea flour and we are making new recipes for bread that won't kill you

    I believe that Candida Albicans is also a big part of this destruction of our endocrinology

    And causes almost every disease in the planet

    It's what I call my Pandora's box theory check out my Facebook page cure all disease

    When I do a Candida diet I get healthy almost overnight energy comes back etc pain goes

    I have also taken turpentine orally

    I was on top of the world for a week but got Herxheimer reactions omg be so careful lol

    If t3 doesn't work this time I am definitely going back to turpentine

    I would really appreciate all the information you can spare about T3

    Dosing I see that the amount of heat and sunshine can affect dosing from what I have read

    I would also like to know what the notable improvements have been

    Time for my spirulina lemon salt spinach manuka spring water ice and alkalising water smoothie now see if I can shake these bloody cramps ❤

    Peace surround you and God love you and cure you soon just for being here and reading some of my journey xxxxx

    Sorry It isn't in any kind of order brain fog and dyslexia mean that I am pretty much incoherent at bad illness .

    ,low ebb times like right now :(

    GOTTA force a smile now it's the first step to reversal of this feeling like I am slipping back down into the abyss of desperation and pain topped up with a generous helping of self wallowing pathetic pity

  • sallyjanedelaney Not many people are going to see your post, it is hidden in a very old thread and replies don't bump threads up to the top of the page on this forum like it does on others. The only people likely to see it are those who choose the 'Recently Active' option under Posts.

    Can I suggest you make a new thread of your own, just copy and paste your message if you like, and perhaps mention in your heading what you'd like comments on (T3?).

    I don't take T3 only, I take a Levo and T3 combo, so can't unfortunately help very much.

    What I can say is that besides having optimal vitamins and minerals, we need to know there is no problem with adrenals and sex hormones as they work in tandem with the thyroid. And before going down the T3 route, on it's own or in addition to Levo, we need up to date thyroid tests to include FT3 so that we can work out if we are converting T4 to T3 and how much T3 we might need.

    We do have some members on T3 only so hopefully you will get some helpful replies to your own thread.

  • As seasidesusie says, copy the above and paste into a new question.

  • Jlo, that's really good news and thank you for posting because it really does encourage newly diagnosed and poorly medicated people when they see positive posts like yours :)

  • Yup Clutter I need this community soooooo much :( :) thx for being a part of it !

  • Please let there be light at the end of the tunnel ❤

  • Congrats glad u r feeling better and being ur own best health advocate I am also going thru crap with dr's and I know more than they do lol :) It is a fight for life ..especially quality of life and most docs do not have a clue of the HELL we go thru cause the thyroid is so very complex even Endos are useless at times with lack of knowledge and not updating their education in that area but good for u ..inspiration to me and lots of others I am sure!!!

  • Omg sooooooo true !

  • P.S. Jlo I also am going gluten free as best I can, it does help somewhat :)

  • jlo, are you taking NDT now or have you just managed to generally improve your health and an increase in T4 is working for you?

  • That's v encouraging. I'm struggling with symptoms and trying to get diagnosed. This site is a godsend I agree. When you don't know who to turn to it's here for you - and not only is the advice superb you feel you're amongst people who understand and don't make you feel 'mad' with all your unexplained symptoms. Your story gives me hope I'll feel better in the future if I keep pushing for proper treatment. This site empowers you to do that.

  • Amen a revelation for me today ❤❤❤❤❤

  • Hi Jo

    That's BRILLIANT! :)

    I have pinned this for a while! xxx

  • Thank you everyone! Gabkad, at the moment I am just taking Levo. But also Selenium, vit D, vit B12 and vit C and pills for other conditions! Shake me I rattle lol. I know that this may not always be the case and I have to continue to monitor my bloods as I am sure it will not last long and adjustments will need to be made in the future. I wish you all well and thank you again for all your support x

  • Selenium and iodine great stuff also pink Himalayan salt x

  • Hi jLo, glad you're feeling better. Can you tell me how you found out you were deficient on vitamins despite being in the normal range please?

  • Hi sydneymark, you need to be in the higher end of the range to feel better. I learnt this from Thyroid Uk and hamster1 who is very knowledgeable. GPs treat on lab results not symptoms. Luckily my GP prescribes my Vit D but the others I buy over the counter. Selenium helps to reduce those pesky antibodies but there is no evidence that this will make you feel better, it's trial and error. What works for me won't necessarily work for you. Hope that helps x

  • Thank you for your post jlo211. I am new to this forum and although I was diagnosed hypothyroid 16 years ago and on 75mcg of Thyroxine I've recently discovered that my thyroid antibodies are around 200. I've yet to see an endocrinologist about this but what you've said is very encouraging.

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