Ah, don't presume they tested your antibodies! Was it the GP or a specialist that ran the thyroid tests for you?
Most GPs in the UK only run TSH readings which on it's own is nowhere near enough. Some run TSH & T4 but really you need T3 as well and thyroid antibodies also.
Can you get hold of your results? Call your surgery and get the receptionist to read them to you over the phone but you must get the reference range too as they are different in different counties (and even within the same counties, between hospitals!).
If your dad had autoimmune problems and lots of your family do it's highly likely that you do too - what did your dad have (if you don't mind me asking). If there's a lot of thyroid disease in your family you'll be more prone to it, plus anaemia, pernicious anaemia and other AI diseases.
Unfortunately the way the doctors interpret a lot of blood tests in this country means you go untreated for something that you could be taking a simple hormone for and vitamins.
If you've had your B12, iron (ferritin) and B12 levels recorded then it's worth getting those results yourself and paying close attention to where in the range you are - the doctor might be telling you you're in range but it could be far from optimal for you.
Cindy :)
Hi there you are going through the mill sorry about that.
M.E. is the correct name for CFS (chronic fatigue syndrome). M.E. has now been classed as a neurological disorder according to the WHO foundation. BUT I have to say that many neuros do not accept this neither does mine........There is still a lot of ignorance sadly about M.E.
This is a truly brilliant site for all things M.E. http://www.ahummingbirdsguide.com/
See what you think.
I did find research also where the thinking is that perhaps M.E. is a benign form of MS which is quite interesting.............
mariax
Hi well I assume i had the thyroid antibody test they told me they checked my thyroid.........
Yes my sister takes extra magnesium for her RLS but didnt know about Epsom salts will tell her that. I have sent her the link for the forum. Thank you for sharing.
Ah the monthly I am still convinced a lot of the trouble we get is hormone related perhaps there is now something missing in the modern day diet that we used to have many years ago....OR environmental issues causing problems for us....
When I see my GP again I will ask about thyroid although my mum hasnt got thyroid problems but my dad had auto immune problems.
My sisters thyroid is autoimmune thyroid ..... very interesting.
Are you 100% sure you don't have thyroid problems? It's quite unusual for someone's child to have the condition without it coming from one (or both) of their parents.
I was told I didn't have the condition by a few doctors but because they were going strictly by the blood results they missed it - when I had a thyroid antibody test it revealed the problem, otherwise it would have been totally missed.
You could also tell your sister to bathe with Epsom salts as the magnesium is good for muscles and helps with RLS.
No hysterectomy for me - I was only 28 when my symptoms started a few years ago but everything is a lot worse when I am due my monthly.
Cindy :)
hi geofran,
i have degenerative disc disease throughout my entire spine and the doctors have said that it looks like the spine of someone 30 years my senior. i can't help but wonder what the trigger was.
it is still unclear as to what autoimmune process is at play in my situation, but i believe with most autoimmune disorders, the problems stem from an overactive immune system where the body is attacking normal, healthy cells, tissues, nerve fibers, etc.
we are sorry you had to find us, but glad to have you here.
best wishes,
binx
Hi Binx, Thanks for your input. I guess I will run it by my alternative MD. I am just afraid to take anything else. I feel that all the things that "modern medicine" has done for me have put me in this condition.
What do you mean your spine is deteriorating? Have they given you any idea of what autoimmune process is going on? Are our immune systems over or under active?
I also have a grade 2 spondylolesthesis of L5/S1 which I had before all the nerve issues started.
What a merry-go-round we are all on....maybe someday there will be answers...
I am so grateful to have found this forum.
hi there,
this tangent makes me realize how much of what we experience is due to our hormones. although i have not had a hysterectomy, i know i am in the throes of perimenopause and the more i read about all of this, the more i am convinced that it has a direct causal link to what has been happening to me. my spine is deteriorating and some crazy autoimmune process is having its way with my system.
i don't know much about it, but it hormone therapy may be helpful, and much research on the appropriate approach to that should be done. bioidentical is allegedly the way to go, but again, i am really limited in my scope of knowledge around all this. maybe a naturopath would be the right person to talk to??
best wishes,
binx
Hi Maria. Thank you so much for your reply to my post. I have never really talked to someone who has all these horrible neuro symptoms. Today my pain is right sided...my temple, eye, butt and leg plus the tingling that drives me crazy. It moves around and I never know where it will be on a given day. That MS question is always in the back of my mind also. My doctor says it doesn't present that way and I have not lost strength. I had never heard of ME until recently....is that a UK diagnosis? I have fatigue but not all the time in fact sometimes I am very hyper. I know I am rambling..please excuse me.
You know I thought in the beginning that the hysterectomy had something to do with it because when I went through menopause 20 years ago I had one episode of RA that completely cleared within two years. I was hoping this would clear also but that has not been the case...I am that much older. Do you think hormone replacement might help?
Again thank you for listening!!
Georgia
Hi Cindy by idea about neurolgoigical problems is we should go into hospital and have all the tests done in one day lol.......It took 3 years for me to have ALL my tests done and the results lol.
No I dont have problems with my thyroid but my eldest sister and youngest does, and so does my eldest daughter.
So RSL could be part of the thyroid problem. My sis is on thyroxine now will ask her tomorrow how she is getting on as she is coming to see me.
You havent had a hysterectomy my any chance have you?
Oh by the way I love HOUSE, he rocks but I know that a lot of the storys are stuck together from other diseases lol........xx
Hi there Georgia, its funny BUT I did some research about hysterectomy and endometriosis and auto immune diseases......
I had about 200 women contact me on other forums who had hysterectomy and endometriosis and ALL of them went on to develop either:
Fibromyalgia
MS
ME
Rheumatoid Arthritis
Lupus.
So I did a bit more research and found someone doing research in USA and found that a high percentage of women with endometriosis go on to develop one or more of the above diseases.
I didnt know that endometriosis was actually an autoimmune problem....but it is....like MS and Lupus etc.......
After my hysterectomy I had to have a lot of blood transfused because I was very very ill. 1 year later my first symptoms started that was in 1981, and slowly but surely a pattern has emerged. I know that, but do the doctors bother to read my notes..........NO CHANCE.......
I think we just have to get on with it, and look after ourselves the best we can. I am convinced that if I have MS then one day a test will finally really 100% positively give me a diagnosis.
Until then I am enjoying my good days and putting up with the bad ones lol.
Big hugs. Mariaxxxx
I am new to this forum. I have read many of the posts and I can relate. My neuro symptoms have been going on for over 2 years. It steals your life. My neuro says it's my immune system (whatever that means) and idiopathic neuropathy. I'll try to give you the short version of my history. Jan '08 total hysterectomy, Apr '08 shingles on left sciatic nerve, May '08 steroid epidural, July '08 Treatment for H-pylori. Bang!!! Total body tingling and nerve pain from feet to head. Had all the tests..MRI, cat scans, EMG, blood work, etc. All they could come up with was some minor nerve damage on left foot from shingles. The first year I barely sat down the nerve pain was so severe. That has improved to where sitting is tolerable but not totally comfortable. Hate all the meds so I don't take them. Went to an alternative MD who has me on lots of supplements. I had it in my head that by 2 years I would be better. I am a little better but no where near normal. I feel like my condition is permanent and it is depressing.
I have to thank you for your post saying that "after 4 years it isn't terminal" . That made me think about this limbo land that we live in. Accept what I have and try to live with it instead of railing against it all the time.
Thanks for listening, Georgia
Yes, you're so right about the 'care' or rather lack of it in the UK.
Thanks for your reply - I know I am fully medicated for thyroid, I've seen bascially THE top doctor in the country (privately of course) - and he really is the top one, this is from patients, not just 'because he says so' and he's assured me that the symptoms I have left are not thyroid ones.
I used to get restless leg syndrome too before I was fully medicated on thyroxine, tell you sister to hang in there because it will go when her meds are at the right level - it's awful to live with.
Do you have under active thyroid too? It hugely under diagnosed in the UK - PM me if you need any contacts, UK websites to look at.
I heard that the writers of House got the idea from the programme 'Mystery Diagnosis' which is real life stories about people having mysterious, often debilitating illnesses, usually having to live with them for years, often being told it's all in their head, only to find years later when they find that one doctor that will listen that they had a rare or stranger presentation of a disease or toxification or infection etc.
Very interesting stuff!
The problem with 'House' of course is that they have to squeeze every symptom and diagnosis into one show - whereas we all know it takes a LOT LOT longer than that!!
We all go to the specialists they have on the show individually, with weeks or months in between.
Hi, well some of the symptoms can be attributed to your autoimmune thyroid problem...many people experinece crawly feelings, tingling in face, and other stuff with this disease. My sister funny enough has just been diagnosed with this as well, and she gets restless legs syndrome (neurolgoical problem), fatique, lack of concentration and feeling a bit weird and dazy........
Also severe migraine has been known to cause numb feelings in the body........
Its just a treadmill isnt it trying to find out what is wrong believe me i have been trying for 4 years so have every empathy with you.
As to House well its just a t.v. show with some probable diseases and some mixed up lol.
The problem in the UK is we only get about 20 minutes for a serious conversation with our neurologist ..... yeh well can you imagine trying to work out what is wrong in that time.
Oh yes then you have all the tests and go back and the doctor has lost notes, OR forgets who you are and has to read back and this takes valuable time and by then you have run out of your appointment time its a JOKE.
I have decided now if i am still here after 4 years it isnt terminal lol so i just take each good day as it comes....
Big hugs....................
Actually, I have to admit that my current network of doctors do look at my previous tests, symptoms, etc. from previous doctors of all sorts. Every one has a laptop computer and can pull up all the information in short order. I'm sure the doctors don't talk to each other in person though.
I wonder how those House writers know so much medical information! There have to be some real doctors involved somewhere in that show.
Welcome, I say that warmly but with a heavy heart for the suffering and frustration you have experienced. I was home today with the TV on, and found a House marathon! I'm not sure if I want House to take a look at my files, or the writers of that show! They seem to have a better understanding of what it takes to get to a diagnosis, treatment, even a cure for these imaginary patients than any of the doctors I've seen.
all the best
--faithHGL
i've always loved watching house but we all know that it can't be true, i mean whose symptoms can develop as quickly as what they show on the series. i've always wondered though, does any hospital anywhere actually have a diagnostics department? as far as i know, you go to a specialist wtih which your symptoms are related. you never have the luxury of having a whole host of doctors at your disposal
Maybe when we figure it out/get well we should start a company that employs doctors from different areas to offer a diagnosistic service.
They would sit down with a patient, go over all tests done so far, question them about symptoms and signs, they could bounce ideas off of each other from there different areas and give ideas about which areas to look at next.
We'd make a FORTUNE!!!
Yeah, I don't see a bunch of people trying to figure me out either!
The House reference cracks me up, I am always saying "House is fake!" I'm guessing there are good doctors out there, but it always cracks me up when they show like 6 doctors sitting around a table brainstorming. Riiiight, like that happens for anyone who isn't a politician or celebrity! Imagine the kind of insurance you'd have to have..
Well.... I'm on 8 specialists, 2 alternative practioners, 3 GPs and counting!
I'm seeing a doctor next month that takes a more diagnostic approach - surprising how many don't, given that it's an essential part of the job!!
I've seen some that have a terrible attitude and others that are keen to help but unable to find the problem - like a lot of things in life it just depends on the person you see and the kind of day they're having sometimes.
lol :) alot of people think that doctors can't be like house but i so totally agree with you even though i've only been to two different ones. the one would definately give house a run for his money
Ha, I totally think I could handle House after some of the doctors I have seen over the past couple of years! ;-)
i think all of us would love to find house! it would be very nice to get some sort of answers even if you have to deal with his attitude, lol :)
Thank you for the welcome :)
I know what you mean, I can't figure out what's causing it either. It doesn't make a lot of sense really.
Well really since April 2009 I've been 'watching and waiting' as there's been little else I could do aside from running tests. Since April I've been on thyroid meds (and then vitamin D since May 2010).
It doesn't seem to have developed in anyway so far... and hasn't eased at all either.
So confusing - it's not even like I know which type of doctor to go and see any more either! I think I need 'House'!