Fancy a chat?!

Hello lovely people

Strange title for my questions but Ive exhausted titles just lately and nothing seems appropriate!

So….added in some T3 (10mcg) on Friday to my normal 125mcg of T4, expected to feel amazing by now, guess what I don't! I know its early days but how come some people say that they felt the effects of the T3 almost immediately?

Im off on holiday next week, had to start thinking about the dreading packing last night (it takes me a week to pack as I can't get my head around it all in one go). I had every item out of my wardrobe I think trying to find items that fit. I am bloated and no matter what I put on, I hate the way I look. It ended in tears.

Last night in bed, I awoke with pains in my toes, every time I so much as twitch them, they hurt. This morning, I can barely walk on my feet and then I remembered I wore a "slight" heel yesterday and i think this has hurt my feet (how ridiculous). I also awoke with nausea in the night, I think I may be ovulating and as I have fibroids, I wonder if this combined with the thyroid medication could cause nausea? Does anyone feel worse when they are ovulating or when they menstruate? I know I do. Why? Is it a hormone rush?? I am 44 by the way. Menopause??

Today Im exhausted. Im at work and would do anything to go home right now, put on my pj's and slouch. A Witney Houston song came on the radio and I burst out crying. My feet ache and I have muscle weakness in my arms today, an itchy feeling in my throat, pains come and go in my bones, Im sighing all the time I am actually making myself depressed let alone anyone around me having to constantly hear me sighing. I have a sort of pin prick pain coming and going quite often in my back on both sides, is this my ovaries??

Yesterday I not sure which planet I was on but no matter what people said to me I just didn't seem to be able to tune into them. Driving was a nightmare as I just didn't seem to be able to focus and concentrate.

Ive struggled for 3 - 4 years with this hypothyroidism (2 - 3 years undiagnosed, a year on medication) and Im beginning to want to give up fighting to feel well. Don't worry, Im not talking about doing something stupid but I think its the hope that each time you try something different (T3 this time), you are going to feel amazing and then when you don't, it sends me on a downer. I feel like giving up trying to feel 100% and just deal with the way I am, give up work, stay inside and avoid people and rest when Im having a bad day instead of pushing myself day in day out to live a normal life. Its the pushing myself each day that wears me out and gets me down because I feel every day is a fight.

The thing is, I read other peoples stories and some seem so much worse than me, some HAVE given up work as they couldn't cope, some seem in so much pain and therefore I question whether I am really that bad?? I still battle on every day and I guess I think that if I can do that then I can't be that bad.

Ive got Vit D deficiency, taking tablets, Ive got iron deficiency, taking tablets, my blood tests reveal certain things that point to anaemia, will these things EVER be corrected?? How bloody long does it take because you would think that a year of being treated should have made a difference wouldn't you?!! I then start wondering whether all of this is hypothyroidism, do I have fibromyalgia, do I have pernicious anaemia as once thought but never pursued, is there something else because Im just not being corrected with what I am currently doing. Be patient I hear you say, Im struggling to be patient now, Ive felt crap for years, Im running out of patience!!

I know how many of you feel like I do, I just need to hear how you deal with this. What about your partners? My husband has had the patience of a saint with me, Im so grateful to him but equally, I still snap at him, I still bawl my eyes out regularly in front of him, I still moan Im fat every single day of my life and I still ask him why he is still with me as I dont actually recognise myself anymore (image and personality) and really wonder if he has ever felt like walking. Does anyone feel the same?

Please reply with your story, desperate to hear how you cope and what you think

Debbie xx

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32 Replies

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  • Oh sweetie, sending you a big hug (not too tight in case it hurts)

    Don't beat yourself up by comparing yourself to other people, everyone is different. I've not been ill as long as you, and haven't had any treatment from the NHS, although I am starting to feel better on self treatment with NDT, but I can recognise myself in all your symptoms & feelings.

    Hang in there babe xx

  • Thanks, receiving the hug (husband is away at the moment and think a hug is what is needed today!) xx

  • My hubby has been good since I worked out what was wrong with me and have had a plan to deal with it. He wasn't so good before that, really just because he was worried, but at least I have managed to find out so much pretty soon after being first ill. But he does love me whatever size I am, I've only put on about a stone and a half and as I am usually very active, I'm hoping that goes soon!

    As for packing, we each do our own so no one can get blamed for forgetting anything! :-)

  • When we both didn't know what was wrong with me, my husband and I had a few good rows resulting in me throwing an antique piece of china on the floor (I was gutted!), Im no angel but I had never got that angry before, I was physically shaking and this for both of us was a turning point in realising that there was something wrong with me as it was so out of character. After that, my husband has been brilliant, he is so tolerant of my moods, he amazes me. If it were the other way around, Im not sure I would be so tolerant. I am very lucky :-)

  • And as for improvements on medication, I didn't feel amazing immediately I took my NDT, it was more like each day after about 4 days I noticed something that had gone. On the fourth day I realised I hadn't had a sleep in the day, then I realised my hands didn't hurt, then that my eyes weren't so swollen, then that my tongue didn't keep getting caught in my teeth, then that I could breathe through my nose at night......and so on. All those little bits might be creeping up on you, and maybe you can't see them just yet because you are busy and stressed getting ready for your hols. It will get better x

  • Well its funny you say that, I have been able to breathe through my nose at night recently so maybe…just maybe…!

  • Oh Debbie, I know exactly how you are feeling!

    I've just sat and read your post, nodding my head all the way through....and the bit about packing for hols...oh my god, its a standing joke in our house, how much I detest packing...i'd never put it down to thyroid issues....it always ends up with an argument and tears, I ban everyone from the house when i'm packing now so I can do it at my own pace.

    I've only just come across this website after 10 years with hypothyroid. I've never felt 100% on the thyroxine but have been fobbed off by so many doctors that it is all in my head and I must be depressed, that I started to believe them.

    What a relief to find people who feel the same!

    I'm back at the gp's tomorrow with private blood test results...wish me luck!

    How do I cope? I don't know, every day is a struggle and I have to push myself all the time.

    Like you today, I could quite easily go home and do nothing....and yesterday was a really bad day...but I try not to give into it because I'm scared I'll never get up again.

    It does become exhausting though and sometimes we have to let ourselves rest and not beat ourselves up over it.

    I really hope the T3 kicks in for you soon, I have no experience of it and i'm hoping it may be my answer too (im going to ask for an Endo referral tomorrow).

    Try and keep your chin up,

    Bex

    xx

  • Hi Bex

    Its funny isn't it, you don't realise what is related to hypothyroidism until someone else mentions it and then you realise you suffer from the same thing! I too have to send the whole family out whilst I pack, I have to have tidy and organised bedrooms to so that I can pack in an organised area, and the relief I feel when all our cases are packed is immense!! Its such a job! I remember watching Katie Price decide to go away spur of the moment and literally just chucked somethings in a case. Oh how I wish I could do that. My packing is a major task.

    Its interesting you say that you too don't give in as you are scared you will not get up again, thats how I feel, Im also determined not to let this condition ruin my whole life so I fight but having a wobble at the moment.

    Welcome to this site by the way, it really has been a life saver for me. I have no idea how I would have got this far if it wasn't for this site. Its interesting to read you have coped for 10years with hypo and never felt 100%, this site is wonderful for suggesting various tests etc to see why you don't feel 100%. There is also a list of good endos available if you need help with that.

    Good luck with the blood tests - what are you testing for? x

  • Isn't that typical, I just typed a long reply, forgot to press 'reply' and have now lost it all!

    Anyway...I wish I could just chuck stuff in a case, my hubby does his in 5 mins and then asks me what all the fuss is about...grrrr

    I now have lists on a spreadsheet (sad, i know) to show what me & my daughters need to take.

    This site is amazing, so many helpful people. I've got information overload at the minute, there's so much to take in...not easy with brain fog and poor memory!

    Its from this site that I got the information on blood tests. I thought if I have enough ammunition the gp can't fob me off again.

    I've had the full thyroid profile done, I posted the results on here a couple of days and got lots of helpful feedback.

    I'm still waiting for my B12 and Vit D, hopefully get it in time for tomorrow.

    There's lots of helpful comments on the T3, maybe it's just a matter of time for you or more tweaks needed.

    You'll get there and make sure you let yourself have any wobbles you need.

    It's a shame we can't just all meet up for a coffee and a chat!

    Have a fantastic holiday, it's just what you need (apart from the packing part!)

    Bex xx

  • Thank you! I agree, its a shame we can't all meet up and have a coffee and a good old chat about this horrid thing that bonds us together!! Ill have a look at your blood test results in a bit to see if there is anything there I recognise so I can advise, hope the vit D and B 12 test sheds some light too xx

  • Hi Debbie. I could have written all that myself, apart from the time since being diagnosed (33 yrs in my case) and I'm not 44 - I wish lol!

    Well, my thoughts are with you, hang on in there. Think about it, even feeling so low you were able to put together a cogent post, so think how high you must fly when you're feeling good. My T3 was added in about four years ago when my symptoms plummeted after years on T4 only. I think it took a few weeks before I noticed any difference/benefit, on 20mcg in addition to 125 T4. Then about a year ago things took a downward turn and I'm back now, on the "but your bloods are in the normal range" merry go round. But we are all different (I'm older than you so maybe there's an age component to all this) and there's no reason why you can't now progress with T3 improvements.

    Like you I could curl up in a corner if I had the opportunity, but what drives me to exercise some, and push onwards, is that my partner had a heart attack in November and needs to exercise, so I do it with him at weekends - def. wouldn't do it for myself but we see each other only at weekends so I guess there's an element of me being bright and cheerful for those days and slump on my own in the week......

    I wish you luck with T3 and generally :-)

  • Bless you, what a struggle you have had too. I hate this condition, its so cruel. I admire you for exercising and pushing onwards. Sorry to hear about your partners heart attack. I really hope you can get off the merry go round you are currently on, I worry that the day will come when my endo and doctor say my bloods are ok, I should feel well. But I shall think positive…..!! x

  • I did feel an improvement when first on 10mcg T3 but I was taking 75mcg of levo and dropped it to 50mcg. The more I dropped the T4 to zero and increased T3 to 25mcg I felt great. I have also tried several natural dessicated thyroid hormones and one suited me best.

    Unfortunately, it is trial and error and one may not suit but another may.

    This is a link which I think will be informative for you. Of course, when you build up your hopes that a change will solve your ill-health, it is a great disappointment.

    We also have to make sure our vitamins/minerals are not deficient. We have to learn such a lot to get better but it is gradual and you can get there in the end.

    web.archive.org/web/2010073...

  • Thank you as always Shaws for your input. You say it is trial and error but did you ever "settle" for one combination/tablet because even though you never felt 100% you felt better than you had? I haven't felt right for years and have been on a gradual decline so now I fear I am at the stage when I am not sure what 100% feels like. When I do have a "better" day, I wonder whether I should settle for this. Did you feel scared that the doctors would never be able to get you to 100% and how long has it taken you to feel better?

  • When I realised it was levo that was causing me problems and the NHS Endo added T3 which made an immediate improvement, I knew I had to go elsewhere as they wouldn't give me T3 alone.

    Thyroiduk.org led me in the right direction. I had to go private as you feel a bit wary going it alone at first. I went onto T3 by and felt 90%. I was prescribed Erfa which again wasn't quite there but anything was an improvement rather than levo. Naturethroid suited me very well which I sourced myself but the GP then offered to prescribe T3 alone but not Naturethroid so I am now on T3 and am fine now, made sure all my vitamins/minerals are maximum.

    You will find that once you have one autoimmune that you usually get more than 1. At present I have 3. I don't want anymore but there's not much you can do. Our bodies react differently to medication.

  • How did your other autoimmune conditions come about? What I mean is were the doctors/endos understanding and knowledgable to test for other conditions or did you have to research your symptoms yourself pointing you to other conditions? How can you decipher between what it thyroid condition and what is say, fibromyalgia? so many of these autoimmune illness symptoms are similar. This is my worry. I feel like I am trying everything going here but just don't seem to feel completely well. I think I feel better than when I was first diagnosed but to be honest, some days, Im not sure I do. Some days I could still just sleep all day. I know my iron & vitamin levels need to be higher but I am trying, it just takes an age to get them higher. I then start to wonder whether I have any conditions, daren't mention it to anyone else as I fear they may think Im turning into a hypochondriac

    Sorry for all the questions but I know how knowledgable you are :-)

  • I was diagnosed with pernicious anaemia by a great consultant, I never had symptoms, so get a injection every 3 months. My mother also had it - was neglected and died of stomach cancer.

    Not one of the medical personnel diagnosed me, GP's, Consultants for this that or anything. ENT - missed diagnosed something else for which I was anaesthetised and nothing was there. Gradually getting more and more unwell over 3 or 4 years, finally A&E kept in overnight and discharged next day with a diagnosis of 'probably viral with high cholesterol'. it was a first-aider who suggested thyroid and I had a TSH of 100.

  • hi debsy , sorry I cant help at this time with your med issues ,but , as it is my lady that suffers from this crap condition , I will put my 2pence worth in , about 2 yrs ago my lady weighed about 6 stone [ stick insect ] since then we have gone through many many hospitals / appointments / meds etc. ... and WE both have been there AND ARE STILL ---- unfortunately there are more of the lower points than higher ---- just always remember that what you see is NOT WHAT YOUR HUBBY SEES ---- my lady is currently about 16.5-17 stone ---- and I am still here and still do the cooking [ for a very good reason ] and thoroughly enjoying OUR life/time and fun together ===== we will get to where we will get to together as you and yours will [ always remember that when you have a down moment --- after all if hubby don't like how you look would he really go on holiday with you ] ---- he wants to be with you and you to be with him ------- be proud and s+d anyone that don't like it .....hope you have a super duper holiday together ---- I am a likal envious ---- alan xxx

  • the envious bit is WHY CANT YOU TAKE ME ON YOUR HOLI'S .....alan xx

  • Oh Alan, you've made me cry!! Thank you for your perspective on it all. My husband sounds like you, he has been there all the way supporting me, holding my hand. Ive gone from a size 12 to a size 14/16 in the last few years and it devastates me but my husband says its all in my head and that when he looks at me, he doesn't see the same woman that I see in the mirror. I do realise that I am probably lucky to have only gone up a few dress sizes, your poor lady has gone up more and it must get her down. We still laugh together ( laugh about the way I use the wrong words,get my sentences mixed up, I even make fun about my image sometimes and laugh! (on good days)). Thank you again for your post, I will have a bloody good holiday, even if I just spend it laying on the sun bed from morning to night!! Take care Alan, your lady is very very lucky to have you as her man, its so good to hear about people like you :-) x

    PS - I wish I could take you both on my hols, sounds like you deserve it!

  • she is now a size 20-22 , but hey ho what fun we have taking the rise out of each other ---- my n.s.l.l.o. calls me 'ugly chops ' --- I greet her every morning with ' morning spotty bum ' .... unfortunately I cant say on here what her reply is ......its good fun when you can rise above the idiots .....I cant take her on holi's because I couldn't afford the sun-block [ that's my excuse anyway - I would need a truckload --] .....mega yuks ....alan xxx

  • Ha ha ha!!! thanks for the smiles x

  • Alan I have to say how lucky your lady is to have you. My hubby has no real understanding of my condition though hes not critical of my weight. I have to go alone to appointments and I dont think they even 'see' me. If I complain to hubby he just says 'go and do something about it' and cant see that the energy has just run out. You'd think there would be enough of us in this country to do make a difference :'/

    Just as a postscript - have you read this and checked reverse T3 ?

    thyroid.about.com/od/losewe...

  • hi there 'jez' , yes I have read it , but for this site and the good people here we would not be where we are now ,.....I have been with my 'doris' for EVERY appointment along the way ----- that way I KNOW THE FULL FACTS 'FROM THE HORSES MOUTH ' ....and we have had 1 or 2 of them [ they think they specialise in thyroid problems ] ....but they tend to be ' pink pig watchers ' ---- they fly past your window every few hours === in flocks === the pigs that is ,,, total idiots...... I am and will be so ever grateful for the help given so freely by the people on this site it is unimaginable .....alan xxx

  • Jez

    You have my complete sympathy for your husband not understanding you. Can I ask what age you and hubby are? My husband is 17 years older than me and has always looked after me, I think this makes a difference. He is my second husband and I know for a fact that my first husband would have been completely unsympathetic or he may have been sympathetic at first but would have expected me to recover by now!

    Could you sit down with your husband and try and have a long talk? Perhaps ask him to look up your condition on the internet for information? This is what my husband did, he spent nights on end reading up about it. A man just wants to fix problems. They don't necessarily want the drama that goes with it, my husband is very black and white. Problem? How can we fix it? The struggle he has now is that he cannot do anything to help me when i am sliding into a negative pit.

    We are always here for you though, remember that :-) x

  • Thanks Debs - its an interesting point - my hubby is 13 years YOUNGER than me lol

    and yes hes a problem solver but ony if he can see the problem I think. Another interesting point is that we've both put on weight and we both have a low basal temperature. Makes me wonder if hes becoming hypo too - maybe then he'll understand :)

  • I thought I was the only one who had such a drama with packing!

  • Well now you know you're not!! It was difficult enough when I was "normal", its one big headache/drama/paininthebum now!! To the point where you wonder whether going away is a good idea!! Which of course, it always is. I also noted a suitcase for all my pills now, i keep them in my handbag, wonder if I'll get past security…. x

  • Bless you. Keep all your pills on you for sure. Not the sort of thing you'd want to go missing.

    I'm about to go away for three months but am staying at my mum's and not only did I make a point of leaving a load of stuff there when I last visited but I had the presence of mind to remember to write it all down, so it looks like all I need to bring is a pair of trainers, meds and makeup.

    Am also transporting a giant antique carved oak lion my friend bought at auction, so it's just as well I don't need to put anything in my suitcase. Might just buy trainers when I get there. :-) xx

  • OMG I could have written that......I'm older than you - post menopausal - and have fought to lose the excess weight (only 2 stone to go but not going) but the story is the same. I havent added the T3 yet (is it prescribed for you because my gp's wont entertain it?) but I'm seriously considering the NDT self med route. My husband and family really dont understand how I feel. I've become a different person in the last 3 years and I'm scared I'll never find myself again. The pains I have are put down to arthritis - have been offered a shoulder replacement (pricey) but not T3 lol - but its now in my neck, back, hips, knees and feet. All I want to do is sit :(

    I feel for you - we are the neglected ones

  • Hi Jez, I have replied to your other post. I ended up seeing an endo privately as the GP was useless. The endo is trying everything for me and the latest trial is T3 which she asked my GP to prescribe. My Gp does do as she is told by the GP so I am very lucky there but I always feel that the GPs at my surgery seriously let me down and they know that, I feel like they want me to get better so that I don't sue them!! To offer a shoulder replacement but not a pill is ridiculous!! I would drove to work in a doctors surgery, sit in their meetings and try and understand the NHS!!

    Have you managed to lose some weight? You say you have 2 stone to go, you've done well if you had managed to lose some - how did you do this? x

  • The only way I could lose weight was on a virtually carb free diet but its not healthy because its high protein/fat so I will only use it occasionally. The weight has mainly stayed off though. However at the time I was also using the gym 3 times a week and now I dont have the energy to drive there let alone work out :(

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