Something to say. X

I know lately I have been posting alot if stuff and it touches my heart that people have been so kind and understanding. I have not had that in my life before and I sit here with tears in my eyes thinking of all the help and beautiful comments. I lost my family as a child and feel like I have gained a new 1. I have become so wrapped up and so self absorbed with my own issues I did not notice the people here were going through the same. If I can help put 1 smile on somebody's face I will be happy. Ty so much I got a heart of gold really and alot of time people can take things the wrong way . Not on here but I mean in general. You are all the nicest most genuine people I have met . Much love and healing hugs to you all. Xxxx

88 Replies

  • healing (((hugs))) back at you Razza :)

    I remember first being amazed at how helpful folk are here, it was no longer "just in my head" and that, sadly, I wasn't the only one - people actually understood me. J x

  • Exactly how I feel so sad that people have had to self medicate .I was one of them but was sent an appointment to see a endo right last min. I'm not going to say T3 is going to be my saviour I think he is just Trting to rid me of the mydexma. It moved me that so many people feel exactly the same as me. I considered suicide etc..Also self harmed but I know I have not been the only 1 x I was on last night and I had some man msg me ssting I could be saved and cured by witch doctor lol and that him and his gf had be cured from aids. Each to their own but he would not leave me alone. If only a spell could save us but it's not reality. I thought I was seeing thinhs lol as I had no sleep in 24 hours by then . It's now been 48 maybe more no sleep it never seems to end xx

  • Yes we have spates of these 'Witch doctor' spams, please ignore them.

    I hope you feel sleepy soon, many of us feel tired but wired -(undermedicated in my case).

    I find eating a little before bedtime helps me sleep longer (just a cheese cracker), or some say a pinch of sugar & salt in water - I always used to wake at 3am and couldn't get back to sleep 'til 7ish - I guess I must have got something right as I don't have the urge for an afternoon kip either. Take care, Jane xx

  • It's good to share, and feel you are understood, I find eating induces sleep also. Not that I have a big appetite. When I wake for the loo, at 3/4 or 5' depends what time I go sleep initially, I can go back to sleep for the same amount of time 3/4or 5 hours!

    good job I'm retired with nobody relying on me! :-)

  • Realy I didn't know that I'm not a great eater myself. Unfortunately my weight doest reflect that because of this illness sadly x

  • Razzarr im not yet aware of your whole story yet, and poss Not helpful for you, I was 13.5 stone, 2 .5 yrs ago, difficult personal circumstances & other health problems meant I Ate next to nothing for 2+ yrs,not anorexia, just circumstances of other medical events, still ongoing but I'm only more recently this year eating 'better' and now weigh about 10.5.

    Every time I went to doc for yet another bizarre symptom with a different condition, the only thing he treated was 'depression' by giving me too many different meds. No I wasn't depressed, just 'frustrated'. 1 year ago I stopped taking everything except thyroxin, but even that has its own sting in the tail now! I will be writing a separate post soon! For yourself, keep your chin up, with our help you will get there. The most beneficial medicine I've had has been here on HU, 2 other and Thyroid UK members forums. Virtual hug from France to all....I'm English from Essex, so feel at home on this website! Perhaps I should call myself EFE :-)

  • Lived in LonDon as kid and was put into care for pretty bad reasons. Was adopted and health perfect hit my teens had my boy . His dad was abusive took 2 years to get our noticed after I was drinking my self into oblivion by 19. Had my eldest girl again another abusive relationship. Mental health was terrible by that point various pills Vallium etc anti depressnts. Again got pregnant had my 15 yr old at 23. Met my hubby on Internet got married and moved countryside by 26. All the while trying to hide my mental health . Tried to get pregnant only as he had no children would reach 10 weeks and miscarried 4 times. Not normal for me. Then periods stopped thought I was pregnant. This when doctor realised I was hypo. I had always been a skinny Minnie. Put me on med's levo lost all my weight went on to have 3 kids with hubby. Thyroid seemed to fluctuates between hyper hypo. Then forward 2011 don't know what happened but my body stopped absorbing t4 but I've only just been told so all this time we in 2015 now and my body been ravaged thought out years. Kidneys and gallbladder. ..pancrenitus. ..loads of laproscopy for sto machine pain . Even chrons diagnosis. Oh my bi polar and personality disorder was diagnosed in my really that's me now with mydexma and finally being treated with T3 . I am bitter docs have misread bloods and I'm now here. Xx

  • Sending you a big hug. I hope you can get your health improved :)

  • Ty very much hugs back ☺

  • Razz just caught up with your reply, omg yes was horrendous time for you. Glad to hear you have 3 kids now. So hope you can look to the future now, better than looking back I think, and hope you are sleeping enter now. I always used to read in bed to get to sleep, worked wonders, now I drop off on bed settee listening to radio or TV. Also I read so where staying up late on computer not good, it keeps the brain active in the here and now. Where a book, radio or whatever is disassociated, perhaps that's why we can drop off better. I also turn wifi off on iPad and Internet box by phone at night I've found that helps not having wifi running round the place. Turned it off on mobile permanently. Just use txting or phone facility. Home phone I always put on speaker so I don't have to hold it to my ear. All tips that help me better. I've not got a regular sleep pattern yet, but it is a better one than a couple of months ago.

    I've started working on theory that whatever condition I can improve must help the others- eventually! Sleep well tonight x

  • Thanks hun u used to love reading but my eyes are bad now. I tend to put musical channel on to sleep I have tried turning everything off laying in dark. The problem it gives me panic attacks from past.oh well I'm sure it will sort it'd self out xx

  • Hi again Razzar, it is comforting here where people are willing to share without judgment. I think it is easier to do that when we don't feel judged ourselves.

    Do you think you are going through withdrawal and that is a large part of the inability to sleep? I guess you are going to have to ride it out but you could check out different detox methods that may help.

  • I been through the largest part of withdrawal now I know I need pain killers for my pain relief but they were starting to consume my life as been on them so long. The sleep not so much was the temp issues I was having that was keeping me awake as that's been going on nearly 72 hrs. I have withdrawn before but not had these issues x

  • Be careful with painkillers, Razzar. Tylenol is very difficult for the liver and I wouldn't take that one at all.

    I agree with the suggestion for melatonin. My husband is using a spray from Dr. Mercola called melatonin sleep support and finds it very effective. You can use more or less sprays as you need them. Don't take B vitamins late in the day and there is an amino acid called Gaba that works on overactive neurotransmitters. Wishing you the best!

  • The liver is why I stopped taking all the antidepressants and other meds - what leaves the liver via the bloodstream goes to the brain and then messes with the neurotransmitters! I've done a lot of research as wel, so think we're singing from same hymn sheet here Heloise! It's about quality of life more than anything, meds can destroy that, as well as, in moderation and by being the right ones with the right blood tests, improve it!

  • Hi SAMBS, I've been singing the praises of Dr. John Bergman and posted his videos for several months now. He taught anatomy for 8 years and seems to know everything about the inner workings of the glands and being a chiropractor has a very working knowledge of the nervous system. He has many valuable videos on You Tube but this is the one I've been posting if you care to listen.

  • Is he the 1 with a family with thyroid problems I watched them all. He has his own website and would love to buy all his supplements but would cost me a fortune x

  • No, he has never mentioned that. He doesn't sell anything but did invite people on a cruise with him which I believe is more to teach than anything else. He has free weekly meetings which are recorded on you tube. People come from all over the world and he offers some initial consultation for $25. This man SHOULD be rich as he gives a wealth of information! He has also mentioned something about bi-polar which I think you would find interesting.

  • It might have been another video some 1 sent me might not be same bloke but whoever it is refers to a certain Web page in all his videos. I went to it and they see all the supplements for thyroid disorder. There was loads of videos made by this guy . He specialises in all sorts .

  • Ty will check it out x

  • This man is an excellent teacher, being in California, he has a slight hippy vibe but after reading alternative BB's for years I believe he carries on the theme that the body is always trying to heal and with the least interference by conventional doctors and their potent drugs, it CAN.

    I would definitely recommend magnesium, vitamin C, omega 3's if nothing else but if you have deficiencies they have to be addressed.

    Give him a try.

  • Will do x

  • Hi Heloise, just been out for a couple of hours - had to get out the house, stop thinking, and breathe some fresh air, so went to local cafe for company and French conversation, and bought a drink. All this is driving me mad trying to get to bottom of it all, just looked At the video, thanks, my bloods don't conform to some of the things he says, but it's more food for thought for me! I still think it's my missing ? Gland in neck from operation as a baby but being born in 47 nofollow on health records. if I lived in CA I'd be booking an apt to go and see him!

  • Hi SAMBS, yes, get out of the house and see a new perspective, maybe healthy people, haha. I'm glad you can do so. I do the same and would love to be in France but I go to a coffee shop for the same reason.

    I've followed health boards for years and years; one was a conventional doctor, practiced for 35 years but the kind that DOES look at research and began seeing the departure from healing (do no harm) and getting into druggery and profit. I think they crossed the inevitable line.

    I think Dr. Bergman is of the same vein, not that every hocus pocus remedy is valid because there are characters in every profession.

    Are you saying you had your thyroid removed as a baby and have no thyroid function at all? That's tragic. But I've seen a woman who had delayed treatment for hypothyroid as a toddler and still has consequences. Diagnostics are difficult and when you only use lab tests you may be missing lots of clues.

    This type of doctor has been very informative as well although he doesn't offer much in the way of solutions, he certainly points out most of the problems. This is short and the first in a series of 24 (reasons for low thyroid).

  • Hi helouise, just seen your reply. Until I joined health Unlocked I never really took much if any notice of health boards or researching till I had the brain aneurysm/ haemorrhage 2013, then thought it was about time I found out what it's all about, cos I had some weird After effects, nothing serious at the time till they all got worse after car accident.

    Thyroid came up because someone I know kept complaining about her health symptoms saying she thought it was the thyroid problem she had, so thought I'd have a look here. If I'd never met her I wouldn't be on this forum now!

  • Goodness, that is pretty serious even as protected as our brains are things can go wrong but you can strengthen arteries and even grow new ones. We can't imagine how we can fix ourselves if we try no matter what age we are. I've learned a lot here myself and decided it is never too late to be healthy.

  • Yes, just makes me want to make better sense of the autoimmune part of it now. I've had several pretty intensive days researching, posting, replying , so going to give internet a rest for a couple of days. Need to try and get some housework done, an expat forum friend and partner is calling in on way to a wedding Thursday. Will give me a break and something else to think about!

  • Yes, take time to live!!!! Enjoy.

  • You put a smile on my face Razzar... :o)


  • Awww ty flower . Let's hope I don't get stalked by a mad witch doctor tonight. Unfortunately sleep is still eluding me. I didn't think it was physically possible to be awake this long . I give up trying to understand this crazy illness xx

  • I give up trying to sleep...!!


  • Me too lol. I don't know how I have manage to function at all I thought my body would have given in think you go past being tired x

  • That I agree with! Body takes over when needs to.

  • razzar, you could try melatonin to sleep, it is a natural substance in your own body but declines, take it about 9 pm, as the brain likes to shut down around 10 to get ready for kip, and we lot have real problem in relaxing, it may work or not, but worth a try, I saw a private doc in2011 when i was so ill and he put me on it amongst multitude of other stuff, but my endo at that time, a private prof who was ex NHS and a lovley man In London, also agreed to keep taking it, I do quite a bit of research and last night I came across it on a heal yourselfat home site written rather well, and it mentions melotonin for also detoxing your brain, so i hope that may be helpful

  • Where do u get this melatonin hun it's worth looking into x

  • It's available without prescription on many sites. I get mine from Biovea UK. I recommend starting with 1 mg and then working your way up to 2 or 3 mg if necessary. For a while, I needed as much as 3 mg every night; then, as my sleep improved, I could go down to 1 mg. Now, I only use it occasionally.

  • Cool I will be definitely getting some ty as I know sleep can be a great healer feel more hopeful now xx

  • I get mine from healthy monthly in jersey.not thati sleep as I have had dreadfulhead pressures constantly wak eme at night I am sooo damn tired but normally it works in a normal person

  • I find my body is tired bit my brain will not shut off at all it's never ending x

  • i take benadry for sleep, two tablets, its sold for allergy but works for helping with sleep, i also flip flop and take melatonin as they say if you keep taking the same thing every day, you will build up a tolerance.

    if you're like me, you have a mind that worries at night, about bills, work, kids, family, it goes on and on.

    im already worried about not getting enough sleep tonight just thinking about it, and mondays are the most difficult day.

  • Be careful with the name "Benadryl" - it means different things in different products and different countries!

    Benadryl is a brand name for a number of different medications. In the United States and Canada, it contains the antihistamine diphenhydramine. In the United Kingdom, it contain either the antihistamine acrivastine (marketed as Benadryl Allergy Relief) or the long acting antihistamine cetirizine (marketed as Benadryl One a Day Relief). Benadryl products are marketed in Australia and New Zealand as a cough medicine and do not contain any antihistamine.

  • sorry, i wasnt aware, i thought it was the same all places. i guess then, i take diphenhydramine since i live in the united states.

  • Happens all the time. Don't worry. ☺

  • melatonin makes me sick and dizzy. But i can take 150mgs of benadril [sp] and feel nothing.

  • Ty Jane yes it was a very odd don't wish a repeat of what happened last night it did kind freak me out. I thought it was a 1 off thing and he just got lost. The food thing you might well have something there. I'm wondering if my mum is under or over medicated. She would be spwaking to u 1 min and asleep the next. I wish I had this side effect. I was just asleep for all of half hour and woke up thinking I couldn't breath. It's so maddening. Let's hope I can get back there lol . Hugs xx

  • Hi. So sorry you are not sleeping. Just an idea -do you like jigsaws? I had a very bad spell after withdrawing from Amitriptyline - really tough. I eventually got to see an endo and am having tests for phaeochromocytoma. This involves small tumours releasing adrenaline. I have been looking at ways to keep adrenaline to a minimum and to relax and to give my brain a rest and stop stressing about all the hypo symptoms that regularly plague a lot of us. ,with my husbands help we have completed six jigsaws over the summer. To start with I found it very hard to sit for long at it, however it has become easier and my sleep pattern is now the best has been for years. Regularly sleep for six hours straight. Go to the bathroom back to bed and return to sleep. Amazing. just an idea. Big hugs.

  • No not tried puzzles babe the problem is my eyes have been ravaged by this stupid disease. It's like nearly every single organ guess if things not optimal it will happen. If I listed every thing top to toe including ops it's astounding how much of ur body it effects. Nightmare x

  • I could not agree with you more , the empathy and understanding from the people here is , in some cases , worth as much as any meds to so many that post their own situation and questions ..... b.t.w. you have put A BIG SMILE on my face so 1 job done already .....alan xx

  • Ty Alan it's just I was sat here with only my thoughts not being able to sleep and thought si many people are in same situation maybe at the same time and I felt kind of selfish. Being on here has opened my eyes to my illness it's not just my illness other people suffer with other problems caused by their illness. X

  • Here I don't feel alone with this illness. I might not say much but I read every day. With everyone in spirit and gathering strength from the wise words.

    Razzar you made me smile too.

    Thank you.

  • Ty nikinoo it's not easy but I guess we just have to try make the most of it . It's so bloody hard to function sometimes people that don't have it really don't understand like my hubby. I never thought it would be so life changing how wrong was I xx

  • I totally agree after 12 years under medicated I was having suicidal thoughts and never knew anything would change. This forum was a huge turning point. Love and light xxx

  • The thing is amber u think people were scared to bring up their other problems as in suicidal thoughts addictions through fear of being judged people struggle on their own I have but only really started posting and talking past week. This has been my darkest week and I think people know realise how many people are suffering not only physically but mentally because of this illness. When I have mentioned I have thyroid problems to people or doc they roll their eyes like yea yea. They never take it seriously x

  • I'm fortunately out of the worst as I am paying privately and on top of my own illness not giving the NHS my life to ruin any more. I didn't have any understanding as every one sees you as normal and don't realise how debilitating this illness is both mentally and physically it's very hard on us. I know watch my mind and body for the signs and work with myself. It's been a lonely journey but it's so much better having this forum. It's a life saviour!!!


  • I was so lonely too and it's been and will be a long road for me yet. I don't blame u hun to be fair. Think its a bit of a lottery with the nhs babe glad u are feeling better it's not fair people are so ignorant. At least u know u don't have to be alone no more x my inbox always open x

  • Stay strong and test as much as you can. Functional medicine docters are very good but don't listen to the ignorant it will make you more down if 2 and 2 isn't 4 then you know it's rubbish after 11 years of being fobbed off I'm very untrustworthy if it dosnt make sense. If you have symtoms and they say nothing is wrong they are wrong not you!!!

  • those three awesome kids of yours are so important, but i get the suicide thoughts, we just want to wake up and feel good, its difficult at times.

  • hi their Razzer1977 i think that is what we are all here for is to help if possibly but to help comfort those that are could i say worse off than some of us i've found more friends that care about you and your illness on this site than anywhere else. sorry forgot to say i'm bigalan and if needed i'm here if i can help take care kindest regards bigalan

  • Hey biglan noticed u like my post and responding and ty. I know I'm suffering mydexma and all the problems that have arisen to being basically not medicated because levo was poisoning me I think I'm just unlucky but lucky my endo noticed it and trying to help. Even tho I feel so bloody awful at mo I see so much despair in other people. Like wise if ever u need to chat or vent xx

  • hi their RAZZER1977 thank you for your reply wow you had a lucky escape and i'm not surprised the feel awful and like you i speak to many on here that are in the same boat but like wise i'm here for you if you need to chat or blow off some steam take care kind regards bigalan xx

  • Thanks hun it's hard just didn't realise before I joined the group the havoc this disease creates on us and ur welcome xx

  • hi their Razzar1977 anytime always here if needed take care bigalan xx

  • ive never heard of mydexma, and just looked it up, im so sorry you suffer like that. does the desiccated thyroid help at all?

  • It's good to talk and even better with people who understand with empathy and not criticism. The biggest thing I realised when I first joined was that I wasn't alone And with any illness where family and friends don't really understand it can be very isolating. It took me over a year I think before I plucked up courage to post something but now I feel I have many friends. So glad you have joined us and become one of our extended family. Ask anything you don't know or understand. Someone will pop up with an answer or suggestions! It can be a long road to wellness but you are already on the way but it can be a slow plod rather than a sprint and things can move slowly in the thyroid world. I always feel better if I get a good nights sleep but try not to let it worry you. I often only got 3 or 4 hours but now that as gradually lengthened as my health as improved.

  • Ty hun it's great to actually speak to people who actually care and don't mind when u whinge about ur pain and tiredness. They just think ur lazy. My mum says get up help ur self do some exercise. Her way I'd tough love I have never understood why she always try to make me feel I have failed. Worst thing is she is hypo herself but her med's seem to work for her. It's nice to have so many lovely friends on here. Xx btw how do u put a profile picture on here I can't seem to findicate a way to do it but seen others have done theirs x

  • Razza - Profile pic

    Go up to the green bar & click on your name & choose profile option.

    You can see your posts listed and there's an "edit profile" box screen top right - you can upload a profile pic, a background pic & also write something about yourself - I think I put my test results too as I forget easy.

    ..and I'm not a big eater either, especially if I've cooked it! No sense of smell/taste so I don't bother much when hubby is away, but I'll cook for the grandkids - they're always starving! Strangely when I eat more I lose weight, like when I visit my Danish friend who'se a very good cook.

    My pet theory is we go into a state of hibernation (hypothyroid) when the body is lacking in something, like food or sunshine, and everything is stored - it's very hard to get out of it!!

    Forgot to say, still a smile on my face J :D

  • Awww bless u so sweet ty glad I made u smile thanks I will try again lol also I have started getting huge hunger pangs this is probably T3 only noticed past 2 day. So I imagine this is a good thing xx

  • I was taking my Levo at midnight and ½ T3 8am and then another ½ T3 4pm, after 3 months I think this started regulating things better for me. However I did wake up with palps which eased with T3, and again at 4pm. I always hated palps - but realised they indicate when hormone is needed ***in my case***.

    I have now gradually moved back to NDT (natural T4/T3) and am taking 2 grains once a day 'cos I'm just lazy & forget until palps remind me (I feel good no weight loss 'tho).

    I hope you feel better once you get rid of that weird stuff outta your system - I expect you'll sleep for England!!! J x

  • Oh I can't wait to sleep for England hun I'm up again with heart palps bloody cold feet lol x

  • how much t3 are you taking & what's your iron level?

  • I have know idea on iron I need to ask doc to give my full blood I had month ago but on 30mcg T3 a day. I'm b12 deficient my last level on that which was properly treated was 150 I know right should be over 1000 . They won't give me my injections back really long story mentioned it in 1 of my posts .takes piss so I'm going to have to supplement that myself. X

  • B12 Ah ha! sorry didn't see your previous post about them stopping injections -

    Join the PA (pernicious anaemia) forum before you supplement & skew results (they're very helpful) - PA can cause permanent nerve damage - not trying to worry you further - your GP MUST take low B12 levels seriously - sadly many have no b****y idea of the effects!

  • I mentioned it on the phone and the doc just talked over me it's like I'm a annoyance to here at this rate I will be more qualified than her to treat myself OMG why ?? X

  • I replied on your other thread

  • Thanks hun I got alot too look up lol better get my pen paper out x

  • I will self inject soon as well, if I have too!

  • I was so tired on 500 level of b12 and low iron levels try to get it all optimum ! Include folate and selium a must also b5/b6 for the mood affects of hypo!!

  • Hi razzarr

    You have just made my day reading that, I am very happy for you. Also disproves that "blood is thicker than water" in your case.

    I did have a family, but not my parents together, those experiences make us tougher and stronger I hope. I have no siblings either.

    You have your family genes and they must been good ones, with your heart of gold! it's life's health circumstances that turn us into wobbling bubbly wrecks at times, which is why it's so good to have the different health discussion groups on HU, where we all try and help each other where, when and how we can.

    So it's more than a smile you put on my face today, you made me feel happier than I've felt in a long time.

    Love and hugs to you, and all. Xxxxxxxx Shirley.

  • Awww ty that's so sweet it's not easy being put into care and being ripped from ur siblings. My adoptive parents have done their best and at times been so frustrated as my mum said trying to get me to help myself is like trying to piss in the wind which bloody upset me. I'm just glad that there are people like ur self that actually understand what it feels like to have a chronic illness. Ty soo much and if u ever need to chat don't hesitate xxxx

  • You come across as having a good heart Razzar and hope that you have found some help here. A turkey sandwich is supposed to have the right ingredients to help you sleep - Trytophan and carbohydrates. Whatever you do try I wish you a good sleep tonight.

  • Ty so much j_bee that vert sweet of you even tho sometimes I get so mad at peoples ignorance at this illness and just tell you to go exercise and eat less makes you want to give up. But everyone's been so lovely. It's better to be amongst people that know and feel what u are going through x

  • However much friends or family try to understand or support us, there is nothing like having people that REALLY understand what you mean when you say you are having a bad day, or feel tired or wired, can't sleep, feel "foggy" or are in pain (physically or mentally). It can be so hard to keep plugging away by yourself, but the knowledge and support on this site is truly amazing.

  • This is so true family and friends try but if they are well they don't know the toll this illness takes . People get shocked when they see me after not seeing me in a long time and my weight gets mentioned I was small b4. They just think you have eaten your self to this state. When ur not on medication that's not working and u can't hardly stand there's no way to get it off even if u dont eat lots. But ty this group has been so benificial to me x

  • I know how you feel I was a fashion model and always had great figure and hair and skin. When people see me it's all over there face that I look different. Very big now and swollen eyes thin hair :) it's true about feeling so misunderstood they judge us because they don't have the illness just believe we have let ourselves go! It's very hard to keep explaining they don't believe you anyway start to say why don't you try exercise and diets as if we haven't ever heard of those before!!

  • Hi Razzar,glad you have found support and friendship here.When I was very ill with Graves disease nobody understood how I felt and to be honest I thing some friends thought I maybe should just "pull myself together".Then I found this forum and met others with the same condition and didnt feel alone with it anymore..It was such a relief to be listened to and believed.This is I think how you feel.They are a good bunch! Take care , hugs Pipps x

  • Yes I do feel very lonely with it and people don't want to understand think ur lazy they don't realise you can't actually do the things u used too. I can't even wash my hair without hurting or run round after kids I feel 70 I'm in my 30s . I have found alot of comfort here and I'm glad people have been so nice. Hugs back xx

  • you have been very important to me since ive joined a month ago, thank you for your support, and i will always try to be helpful to you if you ever need it. xoxoxo

  • Your more than welcome beauty you know where I am if you need to talk hugs xx

You may also like...