Fibromyalgia , the answer ?

Hi Julie, as you will find, even though the Usual Thyroid functions come back "within normal range"....it's the T3T4, that has been found to be the problem, with Vitamin D, and Vitamin B12, if I remember correctly...apparently an Ultrsound shows a decrease in size of Thyroid, from Sylvia's excessive research....I'm still to go to have that one done...(been caught up with my TMJ prob at present)....good luck....Bron

I'm also going to pass this on to my rheumatologist . I firmly believe this could be a huge contributory factor. I also have TMJ and was told ' Oh well, it's part of Fibro' !!!! I've read Dr. Lowes paper. V v interesting. Good luck with the tests Bron x

Julie; don't dare let them say "it's all part of fibro"....yes it is another Trigger Spot...but as I've just been receiving the treatment for this problem, there is help for that too.   My dentist referred me to a Specialist who deals with these issues...I've had a "mouth Stint" made especially for me...I wear it at night, and during the day, if my jaw is sore...it separates/supports the lower jaw, taking the weight off the joint....also have physio, who Manipulates the joint (goes into my mouth, and re-aligns the joint/s)...all is proving Very good....have only been wearing the Stint for 2 days, and so far, feel a lot better.......You do the same....Bron

Thanks Bron. That's really good advice. I've just made an appointment now to see my dentist. Even when I eat my jaw makes the most dreadful embarrassing noises. And becomes painful at times also. I was actually ' putting up' with this. I did read articles about jaw realignment but it all seems cosmetic. The stint could well be the answer! x

Yes my jaw sounds like bones/stones crushing when I try to eat....be prepared for this stint being a costly exercise, though.....I can only hope that the Stint does work, after spending so much, and also I "like my food, and a good talk"...and at present, both are not on my radar....am hoping we can both find a good result...know it won't be ever the same again...but less pain (gee I'm beginning to hate that word) would be great.....till next time               Bron

You have a very good Rheumy!

Hi Christine; yes I am very lucky (good GP too)...I spoke with him yesterday....and guess what....as all too many have found, yes my bloods did come back saying "on border-line", but GP is Very willing for me to trial a Low dose of Thyroxin.....maybe I am more fortunate than others in an way, in that I worked with my Rhuemy, when she was a Registrar when I was still able to work, and knew me from all those years; and same with my GP, he also knows me from those days, and has been our GP for over 30 years (he also knows what I USED to be like, and has travelled with our family through ALL of our trials)...he can also be called "my friend"...as we always spend my visits "catching up" on our familys' lives....one daughter said, only last night..."Mum. do you really pay to talk about us and his family?"  yep, we do !!!!.....Bron

Hi Christine , it's so frustrating when that moderater pops up after you have just typed out a really meaningful post but your luck was in it passed. Yes sheila has really worked her socks off trying to change the way thyroid disease is diagnosed and still patients are left suffering with the most dibillitating symptoms . I can not for the life of me understand how , with all the information available most endocrinologists still stick rigidly to the TSH blood tests ! Many patients know nothing about the different thyroid problems and when they are told , oh all your bloods are normal , there is nothing wrong connected to your thyroid, they take the doctors word . Usually they are tested for any illnesses with similar symptoms , they all come back normal , and they are more than likely " diagnosed" with ME/CFS ! So their suffering goes on with no light at the end of the tunnel. the pain in their joints and muscles eventually told  fibromyalgia , learn to live with it!!! I was never happy with the CFS " diagnosis" so I read anything I could find on ME/CFS , thyroid and fibromyalgia , did it do me any good ? No ! GP s doctors endos all closed their ears to what I had to say even when it was put in front of them in black and white! Some were rude some were disinterested some were very intimidating  some lost their temper and shouted at me .i was told its all in your head you're just depressed. I asked for a trial of thyroxine but refused ,your bloods say there is nothing wrong you have CFS and fibro , read up on them and live with it , HUH , I've been doing that for five years! Then I found a doctor who agreed why should everyone have the same range , he said he would treat the symptoms as those of hypothyroidism and hey presto ! Amazing! A long story cut short after a time although I was at least 60% better I asked to try T3 , dear me the endo said I would have strokes and worse pain in my joints it would only have a placedo effect. He huffed and puffed and eventually prescribed me with 10 mg s a day , 70 mg s a week absolutely useless , people were taking double that a day , he stopped them after two months and would only give me thyroxine again. So there I was and like you, ( I am guessing ) decided to self treat with natural desiccated thyroid as I had read so many sufferers did, and what can I say , I am so much better it is early days but improving every week . Have I got CFS , no I have autoimmune thyroiditis which causes hypothyroidism . As dr Lowe said things must change in the diagnosis of  thyroid illness , he says GP s should ask for peroxidase and antithyroglobulin tests first before The standard TSH and t4 t3 and go by symptoms and a trial of thyroxine . He himself treated many many patients told they had CFS by giving them either T4 T3 or T4+T3 or NDT with great results and thanks from grateful patients. The end ! Lol sy 

 

xxxxxx      Bron

I don't even know whether my hypo is autominnune or what - but I would guess it is.  I feel a little better after starting the NDT in terms of mood and the weight has dropped off but I am feeling worse than I ever have felt physically.  Hard to say what is going on because I'm cutting down on a couple of meds which are notoriously difficult to come off and I haven't even started on the painkillers yet.  I'm not upping my dose at the moment because I've recently been diagnosed with tachycardia and they obsessed with checking my TSH!  Just because I forced their hand re the T3.  I am changing GPs at the moment and once I have - I won't bother with the T3 because - well, I'm sure you can work it out!