Just being diagnosed with FND through the fantastic Edinburgh Neurological team. However, I am having greater difficulty getting NHS to accept Blue Horizon tests which show (both Saliva and blood) that my cortisol levels are very low. Not critically, otherwise I'd be diagnosed, but stage 3/going into Stage 4 adrenal insufficiency.
I am seeing an NHS endo on Wed. I'm not expecting him to accept the Blue Horizon test results, though wouldn't be great if he did - as the BH gp/plus a retired gp friend have both diagnosed adrenal fatigue Stage 3/4.... but I'm hoping with having so many FND symptoms, he will at least agree to further NHS tests, and be open to the fact that FND can have an effect on other systems.
Anyone out there with Addisons's/adrenal fatigue with Functional Neurological Disorder?
Many Thanks.... Cuileann :O)
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Cuileann-6
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Hi you are lucky to have tests done . I was diagnosed in Edinburgh but have had no tests at all and I also have extreme fatigue . Good luck hope you get somewhere with NHS š
Ps meeting with nhs Endo. Didn't go well. He threw out the blue horizons tests I had. Would only go on the sort synacthen test which was some months ago now. I'm not sure why I feel so gutted, as I knew this would happen. How on earth do people go on who have no partner or family support? It's so exhausting. Going for a second opinion as soon as I can muster the strength to find a private endo.
Sorry to hear of your disappointment , I have attended several appointments now and have also walked away feeling gutted , lonely and confused. The doctors really need to spend a month living with one of us to get any understanding of this condition and it's devastating effects on our lives , big hugs to you x
Awwww, that's shocking to hear! I'm so sorry. Makes me so angry to think....to know that there are thousands suffering in silence.
When you were diagnosed in Edinburgh, was that for FND, and was it Dr Jon Stone's team who diagnosed you?.... registrars called Dr Maria Stavrous, and Dr Chandran (spelling?)? Because if it was through them, I'm suprised they didn't do a proper diagnosis of exclusion! You should have been offered an MRI at least, to rule out damage to brain or spinal cord. If it wasn't that team you saw, I'd ask to be referred to them?the research, as you know is in its infancy and has very little funding.... but Dr Stone appears to be the leading specialist, not only in uk, but in the world. There are so few FND specialists.
Or perhaps you are having thyroid/adrenal problems too? If you were there are a list of 'friendly open-minded' practitioners and endos, which you can get from Louise at Thyroid UK. I'll find her email address for you. I think it's about picking the right specialist, as most of the nhs specialists don't even seen tu take RT3/ratio levels seriously.
My system went into meltdown in August last year but I had suffered a seizure the year before and my doctor put it down to an ear problem. Yes I was diagnosed in February by dr stone using the hoover technique which proved positive and sent away with no further tests or treatment I just feel like no one cares and can't believe I wasn't even offered some kind of counselling as I am so depressed by it all and even told him I feel angry and deflated following my appointment and I think it is atrocious that there is so much difference in the treatment we receive and why there is so much difference , it's almost like a postcode lottery there needs to be a more set protocol of tests , why do some get and some don't ? š
Oh I'm sorry.... Yeah, you must feel desperate and very alone. From what I understand there is not much on offer in terms of treatment yet for FND.... there just hasn't been the trials and finances thrown in its direction, which is appalling!!! When so much goes to other medical charities it's gonna take FND a goodly time to reach the same recognition and level of treatment other neurological conditions enjoy! The only thing on offer for me is physio, as I have myoclonus and in wheelchair at no due to muscle weakness.... but I'm not sure if that will be at all effective. I feel Dr Stone is genuinely interested in this area, but you should not have been left feeling alone and so desperate! Grrrrr. Is there no further follow up appointments for you? Or have you just been told to go away and get in with it?
There is a treatment I feel could help, if not treat the cause, would at the very least treat the attendant depression and anxiety which comes hand in hand with chronic illness.
Mickel therapy.com
It's an effective treatment for ME/chronic fatigue/fibro/depression and anxiety. But more than that is the most practical treatment I've ever received, and I've been ill 40 years. They will show you simple every day techniques which may help you deal more healthily with all the emotions which must be swimming around inside.... including all that anger about being left to deal on your own! It's worth checking it out. I was treated in 2004 and enjoyed health for 13 years, until taking a nose dive in March (it appears I never had ME but was fnd all along.... but I also have a heart condition which creates symptoms too. But like I say, I've had all the therapies under the sun over the years, but I really loved this one and it has given me an emotional tool kit which changed my life immeasurably! I was so riddled with anxiety and depression I could hardly function. Now, although I have these physical restrictions, I am still in a healthy emotional state (just healthy normal emotions like anger and frustration, like you, but no clinical depression or anxiety)
Have a read of the website. Therapists do differ greatly from person to person, but I could recommend a few Mickel Therapist if you want to message me... if you feel it's right for you. The treatment needn't be face to face, it is just as effective over phone Skype or email. It's not psychotherapy!! I have to add! They believe that depression is a physical disease.... certainly FND might respond to the treatment well.
Let me know if I can help further.
In the meantime, I'd be interested to hear more about your experience of Dr Stone et al..... All new to me! Keep in touch. You're not alone. We're a community here and here to help each other.... we're the only ones who truly understand I think! Sending you lots of love and hugs Cuileann xxxx
Thank you for your kind words , I have been ill for years and had so many drugs and therapies. I had to ask dr stone for physio as I can't walk unassisted and he diagnosed me with a gait disorder and right side weakness and could see that I struggle with my left leg and drag my right foot. Received a letter last week and it's an 18-20 week wait and I will have to travel approx 60 miles to attend it. I'm a prisoner without the help of someone to support me .
this sounds familiar.... I, too, am on the waiting list of for the same time period! I was only seen last month, so I'm not expecting to be seen til July/August! I'm about 40 miles out, so I feel your pain it seems we're in it together.
In the meantime, I feel the graph on the website is helpful in a general way. The one which shows great peaks and troughs in a wavy line. The aim is to even out the wavy line so it doesn't swing so much. The way to do that is to do less on good days, and more on bad days. That kinda makes sense to me, not that I've had time to implement that yet - still in the crisis/panic stage! it's deeply frustrating, I know, to have to depend on others to get anywhere. I find it hard to be indoors with this beautiful weather, but I'm alone most days throughout the day, so I have to wait for my partner to get inm in the hope that he'll push me in chair for a bit - or I have to wait til weekends. But then, as you'll know, there are days when I can't get out of my bed to even enjoy that!!! grrrr.
There is no other choice than to try to deal with this as healthily as possible.... without putting huge pressure on yourself though! coz it's an untenable, distressing, devastating condition, so trying to 'think yourself well' is never gonna work!!! this is physical in nature, and needs to be understood from that perspective despite the huge tide of stigma coming our way!!!!! Supporting your body in any way you can by keeping emotionally well, will all help you cope with the challenges.
I'm off to sleep now (i hope!) You got sleep disturbance too? got 2 hours sleep last night and totes out of sync!!! I hope we both sleep well tonight. One day at a time eh?! Don't look too far into the future, nor gaze into the past.... only quick glances :O) Your body is working in the here and now, so try to tackle each day in singular situations and keep it simple, otherwise it can become overwhelming. Easier said than done!! I appreciate that :O) xxx
I just joined this group. Iām interested in Michel therapy - please let me know more. My journey began with iritis that led to diagnosis of autoimmune thyroid disease hypothyroidism: Iām treated with dessicated thyroidcwhich has improved my levels but still something is off with debilitating fatigue which includes episodes of slowed movement, unsteadiness, poor short term memory, slowed speech but episodes pass sometimes food helps . Currently on autoimmune paleo diet , gluten free, no alcohol, had brain MRI which ruled out MS but I do have benign pituitary cyst which specialized team told me is not causing my symptoms. My dr just referred me yesterday to neurologist to assess for FND. Any help or suggestions would be great
Hey there, firstly I'm sorry to hear you are going through such a tough time of it. It sounds like a very similar journey to mine, especially the past 18 months. I do believe that Mickel Therapy can help to treat FND symptoms in Some people, but not all. It depends on what the trigger was..... ie emotional trauma/chronic suppression of emotions, through to changes to the brain's pathways due to acute illness or an operation etc. Also the length of time.
This is just my humble opinion. Mickel Therapy bought me some good years from 2005 to 2016, which was my longest remission. But for me, I've had FND for 42 years, with relapse/remission pattern like MS. However, I am hoping for another remission. There's always hope :O)
I am hoping because your FND is recently diagnosed (or soon to be) that Mickel Therapy could indeed help. I can honestly say, even though I am going through a terrible relapse phase, that MT completely changed my life in terms of the attendant emotional health problems I had. The difference is night and day. And to be honest, my emotional health symptoms were far worse, at their worst, than many of the physical ones I have. I still have wobbles - who doesn't especially dealing with a chronic condition! - but it's different this time around. I have remained healthy emotionally.
So, MT would help as a general coaching in how to deal with life, and respond to emotions healthily. I believe it can help tremendously in lifting your general health, even if it doesn't treat your condition. MT cannot reverse Autoimmune conditions, but it will help you deal with them.
Unfortunately, I am no longer seeing clients, otherwise I would offer to help further. However if you go to mickeltherapy.com and put in your postcode, your nearest therapists will come up. Though bear in mind that if you feel drawn to a particular therapist, they may offer Skype, Phone or Email sessions, so it doesn't matter where they are in the world :O)
I really hope this reply is helpful to you, and that you find an MT therapist to suit you. (That's the other thing - if you don't click with the first therapist, try another one!).... this is your health and it's important to find the right person.
I only had a battery of tests the positive Hoover test, the walk like your not drunk test , following fingers etc.... in ny had ct and MRI as they thought stroke... so that it... seen prof Edwards 3 times I think and each times it's like "yes that's another symptom"...see you soon... seen neuro psych who again is like yes it's the fnd !! I just feel if they could put us all in a clinic to give intensive treatment they would.
However... I think from my own perspective... we have to accept our life has to change... I suppose it's like if you had a leg amputated ..
So you start in denial but your legs defo gone and you can't walk so you accept you start in a wheel chair...change of life style, when can you go, what transport, can you even stay in your own home??? That's before you decide on a prosthetic limb. The measuring the physio the psychological stuff. The pain your non existing leg makes...exploring how you lost your leg to people... noticing the looks from people... but sympathetic for your loss not a what up with you look.
I think the difference there is pip, dla, housing, people can see you lost your leg so they get it the pain, the psychological changes, your need for suitable housing, your need to rest, your need for acceptance, your need for help!
I'm yet to accept I can't do thing hence I'm Ill ... I feel awful I have to pay a Gardner and cleaner for things I used to be able to do. I'm now looking into maybe a dog walker... I love my walks but ultimately the spoon story hits home.... dog walk or sleep all day?? So I need to pick and choose ... and it's hard as they are my therapists my friends my hug me pals my confidants... even though I've only met them in the last 2 years....
Amy how I'm still in pain better get my meds and get up sending you all hugs and a pain free weekend.... oh and my son got a gold award for "outstanding citizenship award". For reporting a fire to the teachers and following the schools behavior standards!
you're absolutely right englishmum. I'm still in the beginning stages of accepting (just 6 weeks in) Having said that I've been ill for 40 years, up and down, so this is another bad phase (last one 2001).
It would be so much easier wouldn't it if there was already awareness out there.... the pressure and the isolation of having to explain things etc... all adds its burden. I feel your way of trying to explain it as you would a more visible disability/illness would be the best.
I don't think I'd be having MRI, but I had a negative Hoover's sign.... so I'm not sure where that leaves me. I didn't know what that was until afterwards (seeing it done on neurosymptoms.org website). So, I can't remember her doing that exact one. Yeah, I agree there is a risk that absolutely everything gets attributed to FND. I've had a dentist put dental pain down to my ME (what I was diagnosed with in the 80's - now know it wasn't that!) to dental pain. In the end, I had an abscess and it had to be removed! the definition of FND is in its infancy... we're at the diagnostic stage I guess, and hopefully with time, a clear treatment.a good standard of awareness will come to light. :O)
I won't type more, as a bit stressy, as my second attempt at MRI tomorrow, and I don't want to pass any stressiness on!! ;O)
Congrats to your boy! That's amazing!!! You must be so proud!. Thank you so much for replying, hope your pain has gone off this evening. Lots of love xxx
Hi, I got to the airport yesterday to go to Bali for a relaxing 5 days fir the flight to be delayed then cancelled. Sat fir 7 hours in a wheelchair. I can't sit still fir 1/2 hr due to pain, then they told me and another couple we were all getting on next flight as we were top priority then they took othe couple and left me then after much protesting and I mentioned just bevatse I don't look disabled...
They sent me to what they described as a lovely hotel but I had to hurry as the restaurant would be closing soon. Got there it was a motel for people who like to stay for an hour or two if you get me .no food, no breakfast next day so I would be going 27 hours without food and no wat to take meds and it was in middle of no where. Got a taxi yo city and spent extra $250 so far on taxis, room and a burger from a nearby takeaway.
Have to be back at sir port in couple of hours.
Ex wanted to know where I was going. Think he would have come but I wanted yo get there first and tell him. Just had a feeling. Never been to Bali, I know everyone loves it so glad I didn't tell him he would probably be there or worse trying to book now and going fir 3 nights and spending thousands to get there š¬
Going to send my Mri I paid fir and ultrasound results il put them up soon. The change from the one done 3 years ago in Australia is amazing. My body is literally eating itself away with sjogrens, spine is degenerated, every disc and bone most likely from sjogrens that got ignored fir 3 years by NHS
Gruesome!!! God, a motel!!! I can't believe how you've been treated!! Jeeez.... just looking when you wrote this... does this mean you are i Bali now???? god, I hope so!! I hope you get something out of your stay despite the horrendous start! thinking of you, and yes, please keep in touch re your Sjogren's. I'm so sorry to hear your results
Thanks, although wasn't lookingfir bad results,know my own body and know something has gone wrong. Even the discs where I broke my neck 3 years ago are still swollen.
I'm in Bali - almost missedthe flight today, Perth Australia airport worst in works, dump a disabled personfor 3 hours, I was there first to check in, whole flight got on today I'm sitting half way down the airport as I need to go by lifts but they have forgotten donut me and I hear last calls for my flight , and m wavingcan someone help, I got on and flight left 5 minutes later. I wasn't even on their flight manifest.
Complete incompetency.
So in Bali now. Wasted2 days gettinghere. Will go check it out tomorrow, have 4 days, need to chill. Kidneys barely working now for 8 days.
I totally agree with the counselling point. I was diagnosed and told goodbye, no tests nothing, then going into pip and had a private OT assessment and told you will never work again in any job at 40, I can't accept.
I don't think it's fair to label us with this then not offer counselling so I'm assuming here that many get depressed or anxious because of the situation and increasing symptoms.
For me I was positive before when I got diagnosed then I didn't get offered any physical therapy when all my symptoms are physical but offered psychotherapy instead.
Maybe if there was a counselling session with someone who understood Fnd people wouldn't need to see a physiatrist.
I find in the uk anyway. The NHS is reactive rather than proactive. They will wait until you are really sick then treat you rather than diagnosing something early on that could maybe be controlled if caught early
I am feeling so depressed just now , tomorrow is officially my last day employed and I am currently living off my own savings , don't know how or when I will ever be able to drive and work again. Trying to wean off codamol which is proving really difficult. I have so little energy and no interest in doing anything just want to sleep š“
I hear you. You are going through such a hard time. Who do have for support? I it maybe a good idea to tell your GP how low you feel? also if you needed to talk to someone over the phone, there's Samaritans and Breathing Space. Don't wait til you are totally desperate, these organisations are there for any-time you feel you need to connect with someone. Take Care. sending love xxx
Thank you , it's a tough battle and will phone my g p tomorrow althoughgetting an appointment is a joke , lucky if it's within 3 weeks . My seizures are becoming less so that's a positive but my walking is still none existent and so tired all the time , going to try and go out for dinner if I can stay awake , hope your Sunday goes well x
that's good.... yes, I find that, like Dr Stone suggests, doing more on shit days, and doing less on better days helps to even out the myoclonus attacks at least.... still getting the hang of it though!!!
Hope you get out to dinner.... maybe go even if you're shattered... as we FND sufferers not only need to deal with the physcial issues, but also the boredom and dissatisfaction which rises from having our world limited. So, I do push sometimes to get out into the garden, or go for a drive with my partner. I do always feel better emotionally, if not physically!! It's like walking a tight rope over a river of crocodiles though isn't it!!!! Sending a big hug Ailsaw.... lots of love xxx
This is the thing that counselling really could address that whole changein your life. It's not just one issue. And they overwhelm us. When the 2004 tsunami happened I remember watching it on the news and thinkIng, I can't wrap my head aroundone day being employed, having a home, family, friends, shops etc then it all just goes away and you are left with the clotheson your back. I described this to people when I left Australia, I'm in no way comparing myself to tsunami survivors but a car crash lost me my job, my job licence and career, my secondcareer, my home, my future study, I had lived in oz the last time did 12 years and had a beautiful home and had many great friendsand a good life and job, and after 40 years just met the man of my dreams and then after 6 months was destitute, gave everything away or lost it to selfish landlords and left with a winter wardrobe to go to Scotland, but at least I got my cats. But I was in complete shock. I was too used to having decent paid jobs and never saved. I always thought I was too young to be serious and I had more time to save.
I went through a tough couple of years comingback to Scotland, I don't speak to my family here, all my old friendshave moved on and for me finances are the most stressful. I know some people can budgetreally well or have savingsbut I was never good at that. So I'm so sorry you are leavingyour job but this is not the end, just look at it as a temporary stop, and maybe your life is supposed to go in a different direction.
I think it's equallyhard comingoff medication while you are going through this too. I'd agree that you chat to your gp and see if you can get a medication to wean you off the codamol. I had a terribletime stopping pregabalin and my first gp would not come out to the house when I was going through a horrible withdrawal. I ended up lucky as I'm a nurse at that end point and having other unused or partially used medication in taking nortryptyllineJust to get me through a couple of days then I went and got a privateprescription for xanax. Maybe ask if you can have a short term benzodiazepine, and say you are happy to be monitored, you just need to get off these tablets.I went cold turkey but I would nevevreccomend a method to anyoneas obviously that can have severe effects.I just wanted the symptoms to stop as soon as possible.
Also with your savingsgo straight to he job centre, say you need to apply for pip too.
I worked in financein oz in superannuation (pensions) and I saw so many people who were honesthumanbeings become unemployed and do the right in using their savings, redundancy, maxingout credit cards then they would try to access their pension early with us for financial hardship which they were definitely in but we had to turn them away as in oz you have to be on benefits for 26 weeks + and it broke my heart having to say no.
So I know it's hard I had to do it I went from nursing, being a senior manager, studying to coming back to a country where I knew no one but I appliedfor benefits and appliedfor homeless accommodation and cried the whole way through. They must have thought I was a nutter but I was so used to my comfortable life and never thought this would happen.
So my advice is to get benefits sorted and pip asap and speak to your gp for a med to help stop this. They should be impressed that you want to stop it if they are any kind of decent doc and say you want supervised because even if it's just your gp calling to see how you are going. You have someone (apart from us) who understands.
Thank you for your support. I need to get off these tabs as my IBS is even worse and told that long term use of paracetamol is detrimental to health , I just want to wake up one day and feel good ! Managed out for tea so that was one good thing for today . Hugs to you too š¤
yes, I'm afraid I agree with you on the lack of preventative initiatives. This is exactly how I feel about my adrenal issue.... the grades sufferers go through 1-4 (1-7 if you list third stage a-c), are not treated.... only once you have entered Stage 4 (Addison's is any action taken) That's a very dangerous game.
Of course, I'm sure there are many NHS staff who are knocking their heads against a brick wall in frustration, but a beleaguered NHS, under-staffing etc leads to sometimes that pressure cooker response of trying to put out fires, rather than having the resources to find the cause of the fires. Government to blame.
I think when docs etc don't have knowledge of certain things they disregard them. I know we have knowledge here but there are so many people who blindly believe in what a doc tells them.
Recent eg for me
1. Having surgery on the finger I keep chopping off and I tell the plastics reg who is doing my surgery that I'm having pain on the less affected side of that finger. Her reply was - you can't be because that's a separate nerve. I asked to speak to consultant and told him can you tell your reg I'm an orthopaedic nurse and know my hand anatomy and know it's the ulnar nerve that covers both sides of that finger.
2. Not long after in hospital with viral infection and unable to breathe had a mask with mysterious medication placed over my mouth and nose as nurses felt there was no need to communicate with patient but it was really loose so I asked a passing nurse could she help me tighten the elastic straps on the mask as all the medication was escaping out of the top instead of into my lungs and into my eyes. She informed me - it's supposed to go into your eyes, you just shut your eyes while you have this. I told her I'm a nurse with 17 years experience who has taught asthma medication to children and no the medication does not go in your eyes it is supposed to go into your lungs.
3. Unbelievably this was all within months - went to hospital with stomach blockage. Had massive pain and was looking like appendicitis. Next day head doc comes round, ignores me and talks to her staff. Ask her what's happening what did my X-ray show. She indicated with both hand that - you are blocked from here to here. Meaning from my stomach to my vowels. I said that's odd as I go to toilet every day. She argued about this was not true. I got discharged without treatment and didn't eat for days because I was worried if I was so blocked I might end up with a hernia or such so waited to see my gp. He said the X-ray showed a small blockage lower down. The start of my sjogrens recognition that my motility has been off for almost a year now because my gp gave me buscopan and it's been great. But frustrating that no one puts 2 and 2 together, hodpital admissions with chest pain, difficulty breathing, blocked abdomen, etc all symptoms of sjogrens which I have listed but is untreated and I just get sent home each time, in pain unable to breathe. As iv said I bet the docs I saw each time have never heard of sjogrens Or are too lazy to look it up
oh Amallia!! I'd like to say that I'd never heard f anything so bad before - but, alas, I find I can't. I am just SO sorry you had to suffer such stupidity.... I mean it would be laughable (medicating your eyes! wtf!) if it wasn't so irresponsible... and dangerous.
What a truly gruesome few months you had there!! I hope you now feel, at least fully and correctly diagnosed, although that doesn't help, I realise, if there's no current effective treatment for it. Glad you got your Sjogren's diagnosed. Do you have other auto-immune conditions too? Awful for you. Truly awful.
I re yesterday and Endo.... left me very confused. I don't doubt his experience, he is a professor and one of the leading endos researching Cortisol in particular. But I simply can't dismiss the wealth of research I have done over the past 6 months, especially into the cutting edge stuff re RT3 and optimal treating.
He dismissed my high RT3, coz I know he doesn't buy into that belief... I know this as I am a therapist who often uses body 'communications' to pick up when a client is not feeling they can be congruent. I saw he laughed at the part of the GP's comments from Blue Horizon regarding his warning about medical profession not accepting the whole T3 . I knew from where he was on the page. So, his explanation that my (very) low back-up dose of Propranolol (for migraine)) is to blame for this doesn't completely ring true.
I have two gp's, Thyroiduk part of health unlocked, Dr Wentz' extensive research in US and my own reading, pointing to the fact that my TSH is high normal, RT3 etc very abnormal, saliva cortisol very low, blood cortisol/DHEA flagged as low... my mother had to have a thyroidectomy and is on thyroxine for life..... therefore would benefit from low dose steroid/thyroxine/T3..... but NHS will only accept the short synacthen test I had done months ago now. And, as you know, they use enough synacthen to wake the dead, so as to only draw out those who have Addison's. a pracThere is so much research into the lower dose testing where signs and symptoms exist to support.
I guess, I will take one more shot at it, and try to find an Endo who will at least allow me to try something to see if it impacts symptoms. I'm so tired of it all this week. 40 years, and I am still having self advocate and fight, fight, fight!!! I'll bounce back - I sometimes feel the s... we have to deal with adds to 50% of the symptoms themselves. Ironic, huh!?
But we have these forums..... full of (mostly in my caase!) sane people... and I feel there's a great deal of comfort to be had from that. When I was (wrongly) diagnosed in the 80's, there was hardly anything - no social media! - the occasional pamphlet or magazine! lol
So, I hope this finds you feeling a bit better today. I know you were having a tired day last time. Take good care of yourself. All my love, Cuileann xxx
I wasn't saying it for pity just an eg of how stupid people can be.
Are you hypothyroid?
I am and also coeliac and sjogrens and waiting on bloods for maybe more.
But the English government or NHS or both has decided to take T3 off the list of medications to be prescribed in England instead those patients will get T4. Thyroxine instead of tertroxin.
I have been taking meds for 14 years now and started on T4 like everyone does. My blood results were always abnormal I'd go from 25mcg to max 200mcg then down again. I put on 51 kilos during this period and was a little upset. By the end I went down from eating 700 calories a day to 300! And when I saw endo reg and said I was going up 1 kilo per day on a 300 calorie diet he said maybe that's what I needed to eat. I told a dietitian and she almost had a heart attack.
Not happy with this idiot I got blood tests done by his boss which showed I had coeliac and I lost 50 kilos in 4 months was eating gluten free, on combo of T4 and T3 and it went well for a while. Then weight crept back up. I saw a gp who had read in a med journal that if you know the process - your thyroid produces thyroxin guided by the pituitary gland which produces TSH. If your thyroid isn't producing enough T4 your TSH rise as it's egging on the thyroid to produce enough T4 to make your metabolism work. The T4 is then converted to T3 in the body and that's what makes you function.
When I was off kilter I had TSHs of 89, 100 and 150 and normal rate is .04-4?
So this gp had read that taking a combo of T4 and T3 has been evidence based practice as wrong because the T4 kills off the T3 so you are back to square one and that for some people they should be on a T3 regimen only. I have been for 7 years now. And it works although have put on weight recently due to non functioning kidneys.
So when I saw on BBC news that they are getting rid of T3 entirely in England I contacted a fantastic Scottish mp told her the above and that for those who need T3 only as their body either doesn't work with T4 or rejects the combo and that not being medicated for hypothyroid = eventual coma and death, she was very serious about this and said she was going to bring it up in parliament. She has called me since and I'm waiting for her next call.
I love how decisions are made that have no basis with scientific reality. If my T3 are taken away I would either have to move overseas, I'm already paying 2 private prescriptions as not available on NHS or I would go back to sleeping 19 hours a day as I was before I got diagnosed with hypo and I fell asleep in the gp waiting room after my 19 hour sleep waiting for my results š¬
the whole thing is a mess really isn't it.... I've read so many accounts like this on the thyroid forum. So many. I guess that's why, as people like us a driven to piecing things together ourselves! I try not to think about it too much or gets overwhelming - I don't like to think of the many thousands in the same boat as us.
Yeah, I had read a lot about T3 as a treatment, and certainly there are a lot of people on this or combi, on the thyroid forum. It shouldn't be this hard!
What I can't understand is why NHS Endos are not worried by the amount of people having to go elsewhere to find answers, or self-medicating.
I am being diagnosed at the moment with FND (Muscle weakness/gait problems/migraine/myoclonus attacks etc etc.
I also feel I have a cortisol and thyroid problem. (though nowhere near as badly as you have it!! OMG - those TSH results!!! I'm just marginally high normal 3.51.... with abnormal T3/T4 and RT3)... and going on the two GP's comments, and reading others stories and getting feed-back from fellow forum members, I have concluded that I may have an underactive thyroid. Been going downhill for several years this time (after 3 years of reasonable health)
I'm just still in the process of trying to find a sympathetic doctor who can actively prescribe (both other GP's only provide comments (Blue Horizon)/are retired. The retired GP who has helped me with B12 def. is raging at NHS, as he believes I am stage 3/stage 4 Adrenal insufficiency. But he doesn't prescribe any more.... he's had to 'go rogue' like the famous Dr Peatfield lol.... He was helping me source prednisolone from abroad etc and was willing to guide me, but I am caught between a rock and a hard place, as I also have a heart condition. I am worried about not having somewhere to go should I need support medically.
My partner feels the same - worried about me going it alone. Believe me, I am not afraid of doing that, I did so with B12 injections (which I get from Germany).... but the heart problem is a spanner in the work aaaarrrrgh
I've just asked for the list again from Thyroid UK, and my partner and I will have to plan for the next step. I feel I would happily 'draw a line under it' as the rather severe Endo yesterday advised, if another respected and informed person concurred.
I put 5 1/2 stone on with the last 'relapse' in 2001. Managed to lose 1 1/2 stone. stabilised for a while then put 2 1/2 back on over just the last couple of years. i am vegan, wheat and other grain intolerant as well as many other foods, so my diet is prob 70% fruit/veg. only treat is some very good quality dark chocolate which I ration to 40gms per day. It's not like I have take-outs, drink copious amounts of alcohol, eat cakes/biscuits (more's the pity!!),, eat chips/crisps.... etc
so, it's not normal.
I'll plough on though.... can't let the bugg.... get you down!! I'm lucky in other way - very lucky, with my partner, grown -up son, and 9 year old daughter. I hope you have support in your life too?
Thank you so much for taking the time to reply. It's been helpful to hear your story, though I wish it was different for you. Jeeez,. Take Care, and keep in touch. sending all my love xxx
Hey I'm fine apart from FND sjogrens battle just now. When I was properly medicated with T3 I had the most stable blood results eatimg gluten free felt great, I was really fit and healthy and had a full life. It's just from an accident 3 years ago that what was then diagnosed 2 years later as Fnd is in fact sjogrens only.
I'm bringing back medical evidence from Australia and they have a cool app here so you have your scans emailed to you and you download the app and you can see every image that's been done and save it on your computer.
The pity was that the radiologist just wrote a basic letter on her findings as she is thinking in oz doctors actually read scans whereas in uk I need a comprehensive letter so I'm going back today to get second copy to show more degenerativechanges to my spine. As first mri showed bony changes, this one is now showing disc degeneration. Why iv got a blooming painful back 24/7 and my gp can read this letter and see I have proof of why I have back pain and not send me yo a physio who he wrote I was having psychological back pain!!!
And she said well we are all just getting older. I'm sorry I'm just turned 40, I don't think that's old. I was a fitness fanatic 3 years ago.
The back pain I believe is part of my multiple auto immune diseases even gp said without blood results coming back I probably have rheumatoid arthritis, well if I do I'd like to slow that progression down and not sit with a fake Fnd diagnosis where iv. Been told il just st sit in the house fir the next 40 years
that must have been/still must be a huge adjustment for you to go from being so fit to feeling so ill and in pain. It sounds like you've practically had to self-diagnose, like so many of us. I have heard the 'we're all just getting old' argument so many times from others. Ridiculous. I wonder how they'd react if they were riddled with pain and that was the limp reasoning?!!
I do have a lot of the symptoms of Hypothyroidism, weight gain, fatigue, hair dry, a slight loss of eyebrow and eye-lashes, but not pronounced in any way. If I have a problem, test-wise, it's mild.... it's just the symptoms are horrendous. I just crashed in March and have not been able to walk much since. I am pretty sure of the FND diagnosis however, as I have definite neurological symptoms.... gait disorder, neuro jerking movements, which can turn into an attack, with full-body movements. Migraines. muscle weakness. Fatigue, Sleep disorder. As long as I can brave this second MRI tomorrow - have claustrophobia and just couldn't even get in up to my shoulders without freaking out on the last one... then I can know for sure there is no structural damage.
May I ask, do you think a CT scan would be enough to show spinal or brain damage? I'm ok with CT scans.
So, I think the thyroid/adrenal thang will have to be put on hold for a short while so I can concentrate on getting definitive diagnosis (if there IS such a thing with diagnoses of exclusion!!! as you know too well) I'm really confused about it all. I have researched it so hard, and everything I've read, my test results, the GP's comments, other sufferers points towards certainly having a low cortisol level. But having a top nhs Endocrinologist say 'everything is normal' is really hard to fly in the face of. The only thing which keeps me questioning is I am so ill!!! and have lost confidence having been mis-diagnosed in the past. Also, he was pretty scathing about the T3/RT3 thing. It's driving me mad. I'll just have to re-think it. It could be that I try low dose prednisolone myself (I know it's a low dose my GP friend advised (he thinks I have pre-Addison's), as my 9 year old daughter takes a much higher dose for her virus-induced asthma.
So, you're right, of course.... you're just 40, I'm 53... hardly old age!!! I know you'll keep fighting. It must help having the training you have? though the frustration level must be high when encountering a high level of BS from medical professionals!!!
I wish you all the best.... I know it's so difficult for Auto-immune sufferers, as once you have one condition..... feel for you. Pain is so exhausting. I send you lots of love, and thank you so so much for replying. You don't know how much this has helped me
I also have problems with small spaces! They gave me something like Valium to take the edge off as I was hysterical going in! I just imagine I'm at an 90's rave night in the MRI all the banging and clunking they also talked to me saying ok this on will be 30 seconds then next 45 seconds that way I knew it was nearly over! I managed about 10 scans in the end! So you can do it but ask for meds if you need it they are very good for relaxing.... š š¤£ššš¤
aye, I was given Diazepam by gp, but I've decided not to take it. sedatives bring on a really bad migraine, so I think that might be worse! I'm going to take an antihistamine which makes me drowsy, though I'm one of those people whose brain always has a part of it alert!! lol... my gp tried a morphine injection once to try to jolt me out of a cycle of severe migraine. I kept slipping in and out of dozing for 6 hours, but didn't get knocked out. then sat up and was violently sick. lol I must be a control freak!
Thanks for your support. I've decided to go in not expecting I'll be able to manage it - then if I do, it'll be a surprise!
good advice! I will do. The nurse last time was lovely and I really felt listened to even though I only went in about 4 inches ha ha! It occurred to me also that if I put a flannel over my eyes before I go in that might help! I've got one along with some lavender! I'l try anything. Feel lucky to be given the opportunity to have an MRI, so I'm desperate to make the best of it. It will be really important to the final diagnosis.... so.... deep breaths..... thanks again for your calming words. You've been such a help to me today. Sending all my love, xxx
I hate to say this and iv been trying to keep up with everyone but it's disgraceful that you should have to feel lucky that you are gettingan MRI. The fact that 2 neurologists in the uk decided either I was fine or I had FND and go away now means iv didn't 3 years with an automimmune disease that has ravaged my body.
Just got mri results in oz. and I was specificas I was paying,I asked fir mri for neuro and then one for bones as my 'psychological' back pain means I haven'tslept in 3 years. Even I was surprised by the degeneration in my spine that has been ignored by everyone I speak to in uk. Even repeating my kidneys are not working gets no response. I'm now down to going to toilet once a day before bed and blink and you will miss it. I'm so bloated just now which I believeis fluid as it is definitely not good/fat
Docs are scared of the T3 only thing. I encountered this when I began. It's bevatse T4 is much slower acting and takes awhile to build up so you can't really OD I suppose would be their way of think My if you have thyroidissues.
T3 is fast acting, iv had to adjust a little over the years. I can always telll if I'm a little high as il be hot, not able to get to sleep and the weirdest one which is how I always know if I'm high - I wake up with a song in my head even during the night and I can't get it out. Overactive brain. But the thing they worry about with T3 is the increased HR etc if you are taking too much. Good thing is if you are you can drop it a bit and feel better 3-4 days later. I take 2 tabs a day but it's really fine tuning and sometimes il take an extra one twice a week so 5 days of 2 tabs and 2 days of 2 1/2 tabs. You just have to as we say listen to your body and look fir the signs
that's useful Amallia. I certainly get the impression that most NHS docs don't even acknowledge T3 as a legitimate treatment I'm just gonna have to see ow things are. I am worried about self -treating due to my heart. If not fot that....
ps I got though the MRI today! combi of a face cloth, essential oil and a yoga cd!!! ha ha. I didn't even want to see her put on the face cradle. so wasn't aware she'd done it being blind-folded!! ha ha. Hugely relieved!
Hope you are do ok this weekend. Lots of love and thanks xxx
Also I say self medicate but I'm a nurse so know some drugs and the physiological effect. I wouldn't advise anyoneto self medicate. I'm sorry that came out wrong. I was really lucky I had the best gp in the world in Australia fir 9 years before he retired but when I was taking T4 I would ask him to take bloods as I felt high or low and then I always got a copy of everything sent so I didn't have to go bsvk yo him I could just do minor adjustments and he always said and I will give this advice fir T4 go with what makes you feel better not what your TSH says. If say the range is 0.4-4 as I think mine was I was better aroundsay 5 and my gp was happy for me to be what then means your T4 a bit low. If it was too high I don't sleep anyway and it killed me.
With T3 yes there is a definite fear from disc but their training should Teach them the process of T4 producing T3 and that comboT4 and T3 is a waste it has been medically provenand in medical journals for almost 10 years?
In uk I find they bent really do much testing on a routinebasis at all.
Eg in oz everyone gets their thyroidchecked every 6 months, cholestoral etc mine was high for 3 consecutive readings in Australia 3 years ago and in notes I took to gp but it's never been mentioned?!
Sorry forgot to say Cuileann, look up symtoms of hypothyroid,I had them all and still do get some eg thinning hair, outer third of your eyebrows fall out, etc it's how I could always tell if I'm high or low as I'd be trying to study and brain switched off, feeling cold and wanting to sleep, then too high you are hot, mind is racing when you go to bed, etc
Hi I'm having a bad tired day but I believe there is a link between autoimmune disease and FND
Thanks so much for your reply amallia. I hope you have a better day tomorrow. Lots of love xxx
Hi, not sure of what a lot of what we all have as all so different,some of us. Are still working and driving and still able to socialise. Me nothing. But lovely website to ask questions, get angry on as everyone understands how FND destroys our lives. And can absolutely understand where we are coming from. No one can truly appreciate how FND affects us sooooo much unless they have it. Or the negativity we receive from the medical professionals. Lovely to meet you. Lisa-anne šššš
Lisa-anne.... So true...So true.... It's like adding insult to injury.... the fact that it is a little-known and understood condition means that it is not something the general public can understand. Feeling misunderstood I'd one of THE biggest stressors that FND sufferers have to try to deal with. No wonder many retreat from society all together.... It's so tiring.
The best, I guess, anyone can expect is a few friends who have made the effort to understand at least and more importantly can offer some desire from the constant nagging chronicity of the condition.
Thank God we have this forum to encourage and support each other on.
See I have a complex module on my thyroid but no one here believes me. So after asking for 2 years I had ultrasound. They guys say your find no need for a biopsy... even though he's measuring red and blue areas ! Got endo appointment end of June ! Gp is running more thyroid bloods and kidney tests due to no periods and hot sweats and flashes....at least he's willing to do tests even though I think in his heart he thinks it's fnd . He's good though taking time to listen , he's on holiday now for a few weeks š° so I hope I don't need a dr in between.... just had a salad to eat as stomach is not great... watching the 5th wave then bed.... it's all I do .. sleep pee sleep.... hugs š¤š¤š¤š¤
it sounds exhausting! So hard not being believed! I hope your appointment in June goes well, and you get a helpful response and correct treatment. It all takes SOOOOOOOOOOOOOOO long!!! hang on in there. Sleep well xxx
Sounds like hypothyroidism I was sleeping 19 hours a day when I was in my 20s until my ex dragged me to gp in uk who said - oh your thyroid was low a year! Ago let's check it again. I have hypothyroidism. I spent that last year as a student nurse at uni, missing all my classes, couldn't get out of bed and barely making the hours on the wards.
Your thyroid can be low for many reasons, cold etc but he should have re checked fir but I going to create the last bunch and pop him in it.
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That should have said lazy bunch. Typing bad due to exhaustion
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