Fibromyalgia Action UK
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Read On If You Have a number of serious/disabling health problems (pretty much seems to apply to most of us!)

I read someone's blog (so sorry cant remember your name) asking about antiphospholipid test, and curiosity sent me onto Google because it's not a test I had heard of (and I seem to have come across so many myself!) By accident really I ended up on the site of American Autoimmune which blew my mind! Perhaps you've already covered this one, but if not would really recommend a peek, with special interest (4 me anyway) under "The Common Thread" and (Autoimmune) "Disease In Women". It's written by a specialist in language we can understand. I've been searching for a while to find some answers, and whilst they have yet still much to investigate it explains so much as well. I believe genetic links are well documented and whilst environmental is known to be equally important they need to do more work on the "why" and "how". Sorry I'm babbling, suggest have a read if you want to understand. xx

17 Replies

Just woken up! Your frustration and struggle to get some definitive answer comes through loud & clear, and you are most obviously one very strong lady - respect! I can see you've already done a lot of investigations, for this one just google American Autoimmune. Often, i'm not a great fan of America, but they do invest in science & medicine, and I believe their Universities themselves funded in large part by American Business etc. are often involved in specialist areas. May not answer everything right now, but at least they know which path to go down & have a look :) Very best of luck! xx


this sound really interesting cn you put the link up as i was intially diagnosed with rheumatoid 15years ago treat for 10 of them before they diagnose fibromyalgia only by the touch test where so many parts of your body is tender to touch, i was very frustrated as i have been past from pillar to post my fibro has never really been treat my rheumatoid they question every time i had a blood test at appointment it came back in active, but my reaction was i have the swollen feet, fingers, ect ect, they don't live with you 24/7 , they only see you every 3/6months my doctor on the otherhand documented my swollen limbs as he believe t was rheumatoid, so my rheumatoid specialist discharged me after 15years i complain my hips was constantly hurtin before being discharged they did exray and they contacted me at home to say they have referred me to orthapiedic surgeon (Mr Johnson), after having injections while put to sleep to see if will help i was finally told hip replacement was my option so i had left toltal hip replacement feb 2010 which has left me with more pain and a bursa because of it they now say i have osteo-arthritis aswell as the inactive rheumatoid they also are saying i have painful neuropathy, i have a low white cell count which isnt treat i feel absolutley awful i dread going to bed i don't sleep just lay waiting for daylight, your post makes me realise how many other people will feel like this with no correct diagnosis or correct treatment just left to act on their on device's i know i have waffled on but once my finger click they dont stop, this is the best site gentle hugs peeps

teresa xxxxx


Oh this is awful, you've really been throught it! I know how you feel - I'm 50 and my problems go back to aged 12! There doesn't seem to be any co-ordination in our system between specialist health areas, very much left hand & right hand have no idea what the other is up to, and very little interest either! Google American Autoimmune and get reading. xx


Hi Tulips, I've found the site, just googled American Autoimmune and it came up first, second and third!

I too have an autoimmune disease on top of fibro and believe they are all connected. As my autoimmune disease involves lack of some hormones I am also very interested in anything that connects hormones to a range of conditions.

I will have a look at this later.

Christine ;)


For me, it has put an awful lot into perspective. I just wanted to make some sense of what is happening to me, and I suspect the same could be said for many many others. xx


Hi Tulips,

some interesting reading,

I started with Graves disease(over active thyroid, vile just vile)... about 5 years ago, swiftly followed by Glandular Fever and post viral fatigue, then thyroid Eye Disease.

thankfully Graves was eventually kept under control and cleared up by meds, Carbimazole. it took about 2 years ans the legacy was Thyroid Eye disease. i can't even to begin to explain the horror that is,

anyway about 2 years ago i started to get symptoms i'd not really had before, but did wonder if the dreaded Graves was back. went to the docs and she gave a clinical diagnosis od fibro along with various print outs about it.

i began to wonder if it was a kick back to graves or glandular fever, as i'd always been extremely healthy before, and asked my doc.

"oh i've no doubt about it" was her response, didn't really help but did put it in some sort of perspective and as perhaps there was a "reason" why it struck i in part accepted it...hmmm only just..

I've long thought the medical profession underestimate hormones and their effect on certain things, especially when you see sooo many auto immune diseases, eg thyroid probs, fibro?, arthritis (don't quote me on these but sure you get my drift) mainly effect women.

Will continue reading, thanks

Take care

Jan H xxx


My pleasure! Found this site, again by accident just a few weeks ago. The 1st thing that struck me was how many of us seem to have similar problems going back over many years, and then the response you get is that supposedly there is no connection! How many blogs a day start with " does anyone else get so-and-so symptom? " followed by a whole host of answers back! As we all have suspected, there has to be a connection. Could otherwise feel a strong sense of persecution by The Almighty! xx


I am removing my volunteer hat for this one (metaphorically) because this is my personal experience only.

I think there is so much they don't know yet but doctors often have trouble with that phrase "I don't know". When I was first diagnosed with hypothyroidism, I was lucky enough to be referred to a forward looking endocrinologist who prescribed T3 (Liothyronine) as well as T4 (Levothyroxine). Most people only get T4 because the body converts T4 into T3 and the clinical trials they have done haven't shown any benefits of T3. However, I can only say that when I started it (your T4 dose is reduced) was the first time I felt like me again.

However, the clinical trials are based mainly on the empirical test scores rather than how a patient feels. That's considered to be anacdotal evidence and not scientifically sound.

When I moved from London back to Fife in Scotland I couldn't get them to prescribe the T3 for three years. Then I found an article on Ruby Wax's Black Dog Tribe website showing how T3 reduced depression. Finally my GP relented and I now get T3 and T4 and - guess what - I'm off antidepressants for the first time since I came home and I'm not depressed!

I last worked in the NHS where it was all about the Evidence Base. Thankfully, I don't have to stick to this anymore


Hi whippet,

well it really makes you wonder what goes on sometimes, especially if you've been on meds that you know DO help and another won't prescribe them.

I'm so glad you have finally got sorted and are off the antidepressants and feeling fine in that respect.

mine was over active thyroid, dear god i was like Billy Whizz on speed, it's a horrible thing to have, but thankfully i'm over that one now just living with the aftermath and legacy thereof!!!

take care

Jan H xx


Yes, my Mum suffered dreadfully with hyper so I can imagine x


Hi tulip,

will continue reading when my 2 brain cells meet lol.

i know when mine started and possibly why, but when some who have not been helped for years get a diagnoses, the pieces fall into place it must start to make some sense.

seems the symptoms do vary sooo much. it would help if it were stable and we'd be more able to cope, but such is the nature of this wretched disease.

take care

Jan h xx


Totally agree, thank you for your post and sweet dreams!


1989 after birth of youngest daughter was diagnosed 1st severe post natal depression, after reading magazine article asked my gp test thyroid function diagnosed thyroidtoxicosis which was horrendous. Finally settled down after 18 months, with hypothyroid diagnosed and given 200mg thyroxine only. So many problems followed over the years, few weeks ago my GP sent off the usual regular check, when it came back, she said in her 30 years as a gp she could not remember such poor levels of hormone. Not only was the hormone so low as to be barely functioning, the hormone release from the brain was working frantically to get the thyroid gland to produce the hormone I really, really needed! I've been housebound for a year+, mobility getting harder, I also have lung condition normally found in elderly males and have oxygen concentration machine, allergic reactions ie. urticaria and alopecia since aged 12, rheumatoid arthritis, osteo arthritis, gout (classed as an arthritic condition) IBS, inflamed gall bladder/stones, chronic fatigue (strange that!) and of course not forgetting our old friend fibromyalgia. Phew; take a breath! + diabetes (type 2), asthma. I think that just about covers it. My point being either the Almighty has really got it in for me personally or something has gone seriously wrong and there has to be just one common cause. Autoimmune would for me make perfect sense. I also believe I may have a purely subjective opinion on the start of this condition, in that I had a pretty appalling & abusive childhood, and alopecia arrived following severe trauma. I spent 15 years being led by the mental health 'services' who quite frankly I have reason to believe are often crazier than the patients they (laughingly) 'care for'. What I'm trying to say is, I wonder whether it would be worth asking my lovely new gp for T3? I am desperate for the chance to live a normal life. I have a grandson & he will have a brother in September, and 2 incredible daughters and I dont think there is anything I wouldn't do to enjoy being a really active member of my family (inherent matriarchal but frustrated traits! :).

It does occur to me, especially since finding this amazing forum, there are a lot of people out there suffering like I am, searching for answers which with the best will in the world, our doctors are unable to give. Sometimes I believe we have to find a way to help ourselves, and clearly this website and others like it can have a huge part to play in sharing information as well as providing the emotional support. Thank the Almighty as referred to above :) that i've found you!!! If the T3 has made such a difference for you, and broken up depression in that way, I wonder if all this is being collated anywhere in this Country? If they really do want to get us all back into the workplace, it must be worth investing into curing us 1st!!


i had my gall bladder removed in 2009 my brain is ticking over time i will have a look at this site thanks girls xx ((((gentle huggs)))) x


In my family there is a running joke along the lines of 'medical science hasn't caught up with Dawn yet' and every now and again 'still working your way through the medical dictionary?' I'm a great believer in humour, sometimes though really dont feel like laughing! Seems a bit like somebody has just turned the light on, and I am more hopeful about the future than I have been for quite some time. This online community is amazing! :) xx


Hi Tulips. I like everyone here appreciate your post, having so many of the same problems with so many on here.

I love this site, it's the best one I have known in 7 years of looking. I feel normal again (within this community anyway).

Moved home in March and had to change my phone supplier which resulted in me loosing my email before changing it here. It has taken me weeks to find this again.

I do not know when my problems began as I have so many markers: allergy from birth, fractured skull, 2 motor accidents with glandular fever in between. Remember so many times as a child struggling and not letting on.

Cannot wait to check out the site. Sadly have to wait till tomorrow as I am crashing now.

Thank you x


Welcome back Fiona! Hope you had/having good sleep (i'm going back shortly) Thank you, I believe if we stand together we will, eventually find some answers, and even if it doesn't take it all away, it might just help! x


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