I had a fall in March and hurt myself badly and felt like the symptoms of a PE. 4 days later the pain was horrific and a locum doctor diagnosed it has Pneumonia. She put me on a course of a strong antibiotic, it got worse and she put me on another weeks of antibiotics, but it still was getting worse. My own GP came back and sent me for bloods and a chest X-ray. I also was losing so much hair (again), that I now have bald patches etc. I was told it would take 2 weeks for my tests results but 2 days later my blood results was back, it showed that my thyroid had gone up and I my folic acids where also abnormal, (I'm altready on Vit D), but my X-ray was still being looked at by different specialists, and the above was what they where trying to work out, which is very scary, I'm already on Fragmin 10.000 units twice a day, lethroxine (I think that's the spelling), it's for my under active thyroid. I'm in so much pain, losing so much hair, I'm on morphine and still not out of pain, has anyone got any idea about the chest pain, the loss of hair, etc. Please help, Somebody please.
Another PE or pneumonia or the big C.... - Hughes Syndrome A...
Another PE or pneumonia or the big C. My thyroid has gone haywire, also my folic acids are high.
Have you had a CT? Plain films can only show so much and ask your hospital to do them. I really feel you should go to ED and have a proper investigation. Pneumonia can cause chest pain but so can stress and a multitude of other stuff!
Please go to the hospital, if only to get your pain properly sorted out.
I still remember when I got my first PE's they were going to send me home after X-Ray, but gave me a CTPA to shut me up! The doctor came back and apologised to me when they found the PE's.
It really sounds as if you are desperate and staying home worrying won't make it better.
Thank you for yr reply, I've already had 4 PE's now due to APS, but because my back has fused in a up right position, I can no longer lay down. I have had X-rays and waiting for my results, but I cannot have a CT scan because of laying down.
Again thank you.
Obviously you need more investigation but your pain could be pleurisy, It is excruciating as I can attest. Also, as Ozchick says pneumonia and chest infection causes pain, either way you need more help.
Please let us know how you are.
Thank you for yr reply, I will let you know. It's the not knowing, and I'm upset that the locum Doctor failed to look at my notes before coming out to see me because she was going to give me an antiflamtory tablet, and I'm allergic to any antiflamtory tablet or the creams/gels.
Hi I did send you a detailed reply, in response to your private message, but I do suggest if you can afford it, that you do these blood tests: thyroiduk.org.uk/tuk/testin... Most are not done on the NHS, I save up regularly to do mine, and they do also pick who on Levo thyroxine is not converting their T4 which that drug is, into T3. Also there is a gene test D102 which also show the people not converting their medication properly. It may give you grounds to appeal to try Natural Desiccated Thyroid, which is currently on name patient basis only. MaryF
Hi Mary,
I know I keep going on, but thank you very much for help. I have not yet looked at the link you gave me, I've been so poorly, I'm getting there but it's taken my own investigation to find out what it was etc..
I had been given to much Fragmin, causing hair loss, they never tested my thyroid until I asked, surely it should not be up to me to follow up these things.
I've really had enough, I've got no life, my health issues, although I'm hoping most of them will be under control, but what's life when all I do is to take tablets, in a wheelchair, 24/7 pain, all the disability groups have closed down. Don't get me wrong, I know there are worst people than myself, but when alone, (I know I've got a carer), it's not the same.
Again, thank you Mary for your help,
Regards
Tina
Thinking of you, I hope things improve for you, sorry things are so tough. MaryF
Thank you. .....I asked UCH hospital why they don't have a group for APS sufferers or a Thyroid clinic etc. I asked The anticoagulant clinic this, I was shocked when they said that it would be a good idea to start one, how can I start one when I don't know the answers to my problems, and I had to work out why I was losing my hair, why am I getting PE's etc, and I also worked out that they was over dozing me with Fragmin. Surely they should know all this.
Again thank you for taking an interest in myself.
Tina
You sound like you have some fighting spirit, not a bad idea to start a group, you might meet some new buddies for in person and on line support, if you start one I will advertise it on here for you. If you possibly can, do join TUK on here, you can use the same login and profile, I know it is very annoying but I do finger prick tests through the post to regularly test my iron, B12, D and crucially my thyroid function, which did not show up in my GP's limited reliance on the TSH test. Keep your chin up and please have a nice day. MaryF
It's sounds a good idea, I will look at the link you sent, but I think I need a bit more knowledge, mind you what I've managed to learn and work out things myself.
But I will seriously think of starting a group up.
Regards
Tina
Think of it as a support group/swapping ideas group, a meet up among others with similar health problems, there is one that goes on already I think at St Thomas' however not sure how regularly they meet, perhaps even try to go to that one if you can. MaryF
Thank you to everyone one.
I'm glad that I took yr advise and went to see my own GP when she got back from her hols.
It turns out that it was another PE, plus I've got some torn ligaments were I had fell 4/5 days b4 I got pneumonia, plus with all the other problems, she put my thyroxine up again, folic acid, and Vit D.
She has referred me to a pain management team, but I'm not happy with what exactly going on with the back and legs, my GP seems to think that there is no more things that they can do because of not being able to ly down flat, (so she seems to think it's a waste of time).
I hoping that when seeing the pain management team they can investigate further. I was thinking of alternative medication, as I'm never pain free, but I've been warned because of my APS.
Thank you all for putting my mind at rest and telling me to see my GP.
Thank you
Tina
Can APS come and go, like having lupus flair ups? 
Fluid on lungs
Triple Positive/Warfarin
My name was Firefoxie on here but I had lost all names and contacts. I also had not been online because of health issues.
Neuro doctors
