Hi all. Been missing for a few days, and having a change of heart. Possibly a mistake, but I no longer care, just need help and answers. So desperate, am now trying going down the thyroid route, as opposed to fibro. Feeling so ill (been there before, I know) am not convinced it is fibro, anymore. But no longer know what to think or do. All I know is I feel so ill, think I am dying, and no one seems to be hearing me. Or should I say doc listens, but I never seem to get anywhere. Have asked for my medical notes from doc so I can compare thyroid results over last two years. Never questioned results before, just accepted what they said and adjusted dosages, but something is not right (been changing dosages constantly over last two years) and I can't believe there isn't a link. I feel I am having to do my own research, but it is not easy, especially when I am my OH's carer, plus my brain is like mush. Can't get notes on line at the moment, as no one there to do it, and a waiting list for paper copies, due to shortage of staff. I have, in desperation, decided to see an endocrinologist privately. I am so scared, feeling so ill and getting worse daily. I cannot believe I am in this situation, or that anyone could be actually. Surely in this day and age, you should be able to get answers, even if it is not good news. The uncertainty of existing like this on a daily basis is horrendous. Thanks for listening, yet again. I hope you are all feeling a lot better than me today. Hugs. x.
back again: Hi all. Been missing for a... - Fibromyalgia Acti...
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Hi - I think lots of us will recognise that frustration you feel, and the need for certainty about your diagnosis. Or indeed some treatment that will make you feel better. And as you know you aren’t going to necessarily get either with fibro (though I wouldn’t give up in the treatment).
Re your notes - v annoying that you can’t get them online. But if I need blood test results to show to someone else I just go into the surgery and ask for them to be printed (trying to avoid their most busy times). If you say they are needed for a private appointment (whether you’ve booked it or not) that might help. He/she will want to see them anyway.
Good luck and hope you find some help soon.
I do intend doing that lolacat. Thanks for responding. Sorry if I ranted on, it wasn't my intention, but I do tend to get carried away once I start. I think it comes from having no one else to talk to. I really do appreciate the kindness of all the new 'friends' on here. I just hope I can pay back a little sometimes. Take care
. x
Hi
I really feel for you. You've done the right thing to get a diagnosis, we might not agree with it but needs must. I went private a few years ago to get a diagnosis which was totally against the grain but sometimes if you can, it's worth it. Love and hugs Lynne xxxx
Hello just out of curiosity was the dosage endo cardiologist gave you at hospital different from the dosage the private endo cardiologist recommended? Xxx
Hi
It was heptologist who gave me my diagnosis of Nash. How are you feeling tonight? Love and hugs Lynne xxxx
Hi Lynne. Thanks once again for your support. I just hope something positive comes out of it. I hope you are having a ' relatively' good
weekend. Best wishes and Hugs. x
Thank you so much for your kind words. How are you feeling tonight?
I'm not too good tbh. Bye for now. Love and hugs Lynne xxxx
Feel free to vent , you are feeling very poorly and having to care for someone on top is a lot for you, we do tend to push things if we feel we are not getting the right medical help or diagnosis, I certaintly have been down this road . Is their a close friend or family that can go with you to any appointments, I took my best friend along to doctors, consultant, for extra support and she know me inside and out. She truly was my rock at the time, we do hear you and sending a lot of empathy for you right now xxxx Keep us posted with any progress and I hope it’s sooner rather than later,
You really are great. There isn't anyone I can take with me. I had two close friends who unfortunately both died several years ago. I have another but she doesn't live close by and as she lost her husband Boxing Day, 2018 and I haven't managed to get to see yet, even missed the funeral, I feel guilty about that, so wouldn't even ask, and to be honest because I don't see her very often now I don't drive, even she is not aware of how bad I am, although she does have some understanding as she knows someone else with it. I do have a few other 'friends' but to be honest they are not close enough. They are all aware I have fibromyalgia, I have told them, but it is ignored. None of them understands it or are even interested. To be honest they are all full of their own lives. Even half hearted attempts to explain when I am having a really bad day, are met with, well, why don't you get some painkillers then, or I have patches for spondylosis, have you tried them; we have all got problems! So basically, because I obviously look reasonably ok I just get on with it, as much as I can. I get asked how my husband is, so I suppose I should be grateful for that.
My heart goes out to you, I do understand as people look at us but not like looking at say a broken leg , we do not seem to get the empathy. My sister is 76 has her own health problems (17 years older than me) didn’t accept my invite to visit this week with family (her husband drives) so I put on my face (scary without make up ) warmed up the car and took a 15min drive to surprise her , but it’s always one way sometimes with people, yes you say people seem to get on with their lives without a thought for others , until one day some thing happens and then they might realise if they had been more supportive to others then they wonder why love /support dosent come back. I have a wonderful friend who came today and collected things to help with her homeless fund , my daughter and I had given , she is always fund raising and one of the most giving I’ve ever known, if I had the power I would take away this pain from you and others would be my greatest wish. Glad we can talk, fairly cold today in Suffolk and so glad to be in the warm, I am wishing Late Spring to be here my favourite time of year xx
What I lovely inspiring post, and kind sentiments. In spite of what I say, I do know there are truly genuine, caring people around, just not enough, sadly! I hope your sister was pleasantly surprised, and that you enjoyed your visit. Miserable weather, cold and wet, here in South Yorkshire . Quite happy to be indoors. TV watching later, after DH viewed football. Pleasure talking to you Yasmintina, must do it again. Take care. xx
Hi
How are you feeling tonight?
I've never been referred to an endocrinologist even though I have under active thyroid etc. Pm me anytime.Love and hugs Lynne xxxx
Hi. Bit better than yesterday. thanks. Sorry you are not so good. Fingers crossed we both manage some sleep tonight. Don't know if I am on right path, or doing the right thing with endo., it's desperation really, so fed up of getting worse, and doing nothing. Just needed to do something. Speak again soon. Gentle hugs. x
Hi
Glad you are feeling a little better. It's so hard isn't it. I know I'm one of the lucky bones who have support. Pm me anytime. Take care Lynne
Hi again. Me neither. ~Ever been referred to an endocrinologist that is, even though I have been diagnosed hypothyroid over 30 years. Tentatively asked GP a few times, but was told it was not necessary, as results were OK. or if not, dosages just slightly adjusted. Just as an aside they have been completely out of whack for the last two years and my medication, adjusted almost every six weeks, is at the lowest it has ever been. Which I have accepted in good faith. After delving into it, however, realise just what a complicated minefield thyroid is. A lot of symptoms overlap with fibro. which is why I am venturing down this track. But evidently it is not that simple. I have been on a thyroid site and people much more savvy than me have explained that the endos. don't always get it right anyway. As I understand it, unless they are thyroid experts, and a lot of them apparently specialise more in diabetes than thyroid, they don't always do a full comprehensive testing and I may need to get my own tests done anyway. I am in the process of trying to access my medical records so I can at least make a start. Sorry, I have gone on at length, yet again. Query? What is Nash. Only asking as I also have constant nausea and been told I have fatty liver and irritable bowel . As you can see this is 4 am. So much for a good night's sleep.Going to try again now. x
Hi
I think we have to fight to get anywhere at times.
Nash us non alcoholic steatohepitis with fibrosis, this was caused by meds given to me by my drs over the years. I do get a lot of pain because my liver is so enlarged it has stretched the capsule around which causes the pain as there are no nerves in the liver. I've had many drs say but the liver doesn't feel pain so I then have to explain it to the Dr!! Doesn't give you much faith does it?!?
Trying to lose weight, hardly ever eat anything cos if feeling sickly. Take care. Love and hugs Lynne xxxx
Hi Oldham12. Hope you managed some sleep last night and had a reasonable day. I realise you have a lot of problems, so are you able to get out at all? It does help to break up the day if you can. I had initially thought it was going to be a better day here. More fool me. It started badly and got worse this morning. I ended up in meltdown, having had two rows before lunch, One with the Health Centre and a follow up with OH. Not really his fault, but I needed some understanding and support, after a heated altercation, but as usual, he dismissed it as nothing, as it didn't involve him. Even though he lives with me, knows how much /when I am suffering , on sofa curled up with hot water bottle, in constant pain, and the rest. he acts like it is just a headache that will go away if I take a painkiller. And goes back to his own bubble of telling me his woes , asking what is for lunch, watching the TV and moaning when I leave him alone if I use the computer. Leaving me to sort the rest of the day. That is just how it is. After that all I wanted to do was weep, but didn't. Stiff upper lip and all that. Then, computer printer packed up. Managed eventually to get it working, only black, but at least now it works. Back on an even keel again for now . Hoping for a quiet evening of TV before bed. Hope I haven't bored you to death. Just a bit of insight into someone else's day. It isn't all bad. Going out for lunch with one daughter on Saturday, and the other next Monday, if all goes to plan. Hope you managed to have a not too bad day and wait to hear from you, if and when! Take care. x
Hi
No sleep last night. I had a little walk this morning, had my walker so I could sit when I want. Managed to sleep for an hour this afternoon. My hubby is a great as are the rest of my family and friends and all of you on here. I'm a glass half full normally but you probably read my thread last Tuesday that I couldn't stop crying, I said I just can't cope with it anymore. Luckily I was able to lean on Dave, he held me until I'd calmed down. He feels helpless, I've got so many conditions that he can't do anything about which is so hard for him, I said but you are there for me which means the world.. I've been on the other side of the coin and it's horrible when you feel you can't fix it. I will shut up now. Love and hugs Lynne xxxx
You are so lucky to have a hubby who is fit, able to understand and caring. I also understand the frustrations and difficulties you and he must have. I am not being glib. Illness makes things so difficult for everyone. I wish I could be less stressed. I get so angry. which is a bad thing, because I have had so many 'conversations' with my hubby where he will keep making suggestions, which I don't want. or need. i.e. take a painkiller; go to bed for an hour. But , I 'tell him' that instead of making suggestions, It would be nice if he offered occasionally to make me a cup of tea, fill my hot water bottle or give me a hug. He just gets angry back and says he does help, and he does what he can, if I ask; ; which I admit he does. i.e. washing up; help me hang out washing and fetch in; prepare veg for lunch, and other little jobs. I know I sound ungrateful , but truly I am not. I do appreciate what he does; and I know in his own way he does care and I know he does have limitations, which I also worry about. It just so difficult with us both having health problems. I sometimes feel overwhelmed. Feel I have a weight on my shoulders, for both of us, dealing with everything, whereas he is quite happy to poddle along leaving it all to me. Most of the time we just get on with it, but when things are really difficult, or their are extra problems to deal with, emotions tend to run high. End of rant for tonight. Thanks again for listening. Hope we both get some sleep and have a better day tomorrow. Hugs. x
Thank you. It seems that you do nearly everything, he should do a little more. Maybe show him this site. Pm me if you need to. I will leave my phone on. Love and hugs Lynne xxxx
Thanks, yet again Lynne. In an ideal world. Unfortunately real life isn't like that is it. Showing him this site wouldn't help as he doesn't really grasp how things have changed from my perspective. I have always done the responsibility stuff and he just accepts that things will carry on as they always have. He wouldn't be able to take it over anyway. He realises I am ill. He knows when I am in pain. He just doesn't fully understand all the implications or know what to do about it. (Let's face it he can't do much about it anyway). His dementia seems to have diminished his observation, reasoning and thinking powers as well as his memory. He is OK, at the moment at least, as long as I ask or tell him what to do. and he is quite willing to help. Most of the time. But, he is also at times in denial and stubborn . I have to accept that this is how it is now, but it is not easy, when I am having a bad patch. As my mum used to say 'don't moan, there is always someone worse off than you'. She was right about that! So back to the glass half full. I must admit that venting on here does relieve some of the stress, the down side is that everyone on here already has problems of their own. I hope I can reciprocate, when needed. Sending hugs. x
PS. I have just realised you have mentioned you are also hypothyroid. It is amazing how many of us have overlapping conditions. I am convinced there must be a link, hence me now pursuing the thyroid route to see if I can get any answers there. I am not holding my breath, but in desperation feel I have to do something. xxx
Could you have a full blood count done? It must be so hard for you, coping with your own conditions and also it must be very hard your husband having dementia. Is there any help you could get to look after him. Just a thought. Love and hugs Lynne xxxx
That's a good way forwArd an Endocrinologist will set you in the fight track.
Thank you NurseGladys123. At the moment I am hopeful. Long may it last. Take care. xx
It's so awful when you feel that ill and you are having difficulty improving and getting any answers.I am not familiar with thyroid problems but I do hope you get some answers when you see the Endocrinologist. Best of luck, I hope your appointments soon. xx
So sorry you are feeling so Ill ShelWhitt, I personally think many of us have unrecognised thyroid trouble; I'm losing my hair and having trouble with keeping the weight down, amongst other things.
Unfortunately, in Britain we don't seem to have the most sensitive Thyroid tests, so I am certain many of us are missed.
Cheers, Midori
Hi
I have under active thyroid which took a while to do diagnose, it only got sorted when I saw my favourite Dr. Take care. Love and hugs Lynne xxxx
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