Hi guys I wanted to come and share my story wit... - Thyroid UK
Hi guys I wanted to come and share my story with you :)
I cannot watch now but will do so tomorrow 
Aww thank you Shaw's, it's two sections half hour in total, if you've ever seen me ramble you will know how hard it was to fit it all into thirty minutes but I realise the length will put a lot of people off. I may do snippet videos of life with RA...or at least my life cos it's a pretty complicated. Seems all us chronic warriors are complicated hehe x
Have you got a problem with your thyroid gland as well as RA?
Yes I have hashimotos hypothyroidism I was diagnosed a year before the ra diagnosis, one of my first ever posts here three years ago was "does anyone else believe hashimotos/levothyroxine is connected to RA and has bought it on in me?" If course many people answered that they are both autoimmune diseases and that they tend to come in groups. Since being diagnosed with hashimotos I've collected a grand total of six autoimmune diseases :/ I was born with health issues and I can't help thinking it's all connected, of course I struggled with mental health, everything felt so much harder for me, I was so exhausted and aching constantly but as a single mum no one ever thought maybe your sick, they just figured I was depressed 
I'm sorry you have so many auto-immune conditions and yes, you are right they will diagnose your clinical symptoms and give you a prescription for that i.e. depression, pain, etc etc but don't give you blood tests or due to the UK guidelines, doctors have been told not to prescribe until TSH is 10.
I have 3 autoimmune conditions.
Which ones are you blessed with? Obviously I know you have thyroid disease. Did you watch the thyroid film? Oh I can't remember what it was called now but I watched it on vimeo
I've had Alopecia Areata 3 times. I have pernicous anaemia, diagnosed many years ago. Now hypothyroidism, undiagnosed and untreated for a long time. Like you was given different diagnosis until a First Aider suggested to me to check thyroid gland. He was right.
I have watched quite a few films but don't know if it the one you mentioned above.
There are other thyroid related films? I must seek them out. Being a member of the thyroid club is eye opening for sure. It's hard to believe how right my nice Dr was about the lack of knowledge in the field. Even my endocrinologist seemed to be uninterested in the thyroid gland and told me I should think myself lucky it's only hashimotos. Of course I'm aware it could've been worse, as it turned out it was much much worse with the RA and ra related lung disease but would I have got so bad if I'd been treated earlier who knows? My mum has had pernicious anaemia and alopecia, I keep making her get checks for thyroid and rheumatoid, she's recently changed job to delivery and is getting some swelling. My maternal grandmother had hashimotos and rheumatoid arthritis too. Everyone I speak to with any of these conditions they always have a few more things going on than just that. I think we should all have a head doctor specialist in autoimmune diseases to overrun our cases cos each of my specialists look at the one area of me they know about, I think they miss so much because they don't ever see me as a whole person, all of my issues combined makes for a complicated case. X
I think you've had undiagnosed Hypothyroidism long before you had all these 'clinical symptoms' arising and being treated as apart from the Thyroid.
Carpal Tunnel Syndrome is a clinical symptoms of hypothyroidism as well as Gall Bladder problems particularly if you have hashimoto's.
This is a list of the main symptoms and I think you will tick many of them.:
thyroiduk.org.uk/tuk/about_...
I like the fact that your GP said to you that he had little knowledge about thyroid gland dysfunction and advised you to do your own research.
I do admire you for not giving in and trying to improve your life whilst looking after 4 children and being unwell yourself as well as studying and qualifying for a degree.
That's Part 1 of your story
Yes thank you Shaw's there is a part two also haha and I hope a part three will be there in the future, the one where I start improving I hope! I'll share that with you all when I get there too the thyroid was most definitely evident, I just hadn't known that all those issues should have led to thyroid tests. The Dr I saw at that point was a "borrowed" doctor so sadly he was only with me through that part with the thyroid. I believe had I not agreed to see the different GP I wouldn't have even got my thyroid scanned. My regular GP had known me for too long through all the difficulties that ensued from being a separated family so he had most definitely stuck me in that mental health box, TBf I did used to cry every time I spoke to him lol. As a single mum he was the only person who ever asked how i was coping lol. I do wish I could have completed the full degree, not that im likely to be able to use that degree to seek work but because I know I could have done it. The *fibro fog* has took over there tho lol. I can't help wonder would I have been a better mum or coped better with my workload had I been diagnosed and treated years earlier...if only we could all turn back time eh? But then would anyone listen to us no matter how much we pushed? Xx
Technically I've got five kids as I foster a teenage girl too lol she came to me just as I was getting diagnosed so it wasn't really an ideal situation for me but she needed someone to help her so I helped, she's still here with me now, recently turned 18, but my oldest son is 22 and has his own home and works hard so I hardly ever see him x
Good evening Orchardcass77,
Thank you for sharing, it certainly means a lot and I am sure this will open the eyes of many and offer reassurance to those not being listened to. You have such a wonderful attitude to your dreadful illnesses, I really am so impressed and I hope you are so proud : >
I have had so many arguements with doctors, that now I don't go to the doctors at all, I treat myself.
I hope you fine health and happiness along the way, you deserve it
Best wishes
Debs x
Thank you so much Debs it happens so often, from all I've learnt so far it's any autoimmune disease that seems to be ignored/misdiagnosed and they affect more women than men. Unfortunately I think we get some prejudice as females alongside being chronically ill. In reality for a while I was in a very negative place and that became very dark and lonely. People felt bored if hearing my health woes, but that was all that was going on in my life I didn't have anything else to talk about. Then I realised there are lots of people out there just like me, needing to talk about what's really happening to them and also finding themselves alone in their fear and pain. I may not be able to entertain my old friends anymore but I want to be a friend to everyone out there going through this. With the power of the internet none of us should feel we are going through this alone x
You really are wonderful, it is very uplifting hearing what you say. I have gone through hell and back and the doctors only made things a million times worse, infact nearly putting me in an early grave. I will never forgive them, I have a lot of anger towards them, I am so impressed that you don't have that. My partner has copd and emphysema, so I can imagine what you are going through with that, it is heartbreaking seeing him when he gets these terrible chest infections and can't breathe - they have let him down and don't seem to care.
Best wishes
Debs x
I shall be adding you to my prayers (or positive vibes...whatever you believe in) for both you and your hubby. Being breathless really does suck. Follow me thru social networking if you would like to hun I'm all over the place Google plus Facebook and Pinterest you can find the links in my profile I believe xx
Thank uou Orchidcass77, I don't have facebook or twitter - which is now a real shame as I would have loved to follow you. I think I will have to look into that
Best wishes
Debs x
Hello just looking for support following Total Thyroidectomy and to share my story.
I said I'd come back with my results :)
I must share this theory with you, hypo folks
Reply to a post from Tats which I wanted to share re., cardiac symptoms.
Come clean to my gp?
