Hi
I have hypothyroidism and now looks like generalised myasthenia Gravis
3 months now I cannot walk properly. I’ve had double vision, blurred vision and face a speech also affected at times, not always. But always my limbs and midriff.
I’m waiting for a neuro muscular app. But it’s taking forever. Has anyone out there had or have this. This is so sudden I’m not sure what to think.
I’m normally busy and working full time. Now all I can do is lay down every day.
Many thanks
Pam
So sorry to read you have M Gravis. I dont know much but I can tell you my mother was diagnosed in her early to mid 80s
It affected her upper body, her strength was minimal and she was constantly breathless. Even hoovering was too much for her and she'd been a very active woman. The muscles were weakened and swallowing was a problem, speech was slurred. Eventually she was hospitalised and put on a drip to kick start her immune system. The staff said they couldnt treat the MG until her system was up and running again but once stabilised she recovered very well. I hope you're getting the treatment you need as well xxx
Hi Chrisj,
Thank you for your reply. Im sorry to hear about your mum I hope she’s recovered and is ok.
I’m not 100% sure if I have MG to be honest. I’m under investigation just now. I have hypothyroidism and low cortisol and low ACTH. I have severe muscle weakness mainly in my limbs. Sometimes in my face and eyes. Recently I’ve have blurred and double vision. It seems that each time/daily I take my thyroid medication this symptoms are so so much worse. So bad I can hardly move. I’m normally very active and busy with a full time job. This has brought everything to a halt. Had your mum got hypothyroidism and can you remember if she had any issues with her medication please. Many thanks
Pam x
My mother had an over active thyroid in her 40s, its such a long time ago not sure exactly when. Seems to run in the family, I had the same thing in my early 30s, my daughter was quite poorly a few years ago with it but she's well now, and one of my auntys on my mothers side had an under active one most of her life but didnt suffer unduly from it.
None of us had medication problems that I knew of. We, mum, daughter and myself were prescribed the same meds. My mom passed away almost 10 years ago just before her 92nd birthday. She became ill with alzheimers and had to go into 24 hour care where she picked up a chest infection that she didnt recover from. Sorry I cant be more help xx
Hi
Thank you so very much for your reply. I’m sorry your mum has passed away. 92 is a fantastic age and I’m sure she had a wonderful life.
The more I think and read about MG the more convinced I have it. I cannot walk probably I’m like a rag doll. Or my partner jokingly says like Mrs Overall!! We have to keep smiling whenever I can. Two soups 😀. Seriously though I’m in a mess. I hope to be seeing a neurologist soon at the Walton Ctr in Liverpool and hope to get some much needed help.
Thank you again.
Pam
goodness chrisj that is just fantastic feedback and so hopeful and encouraging, thank you so much, very best wishes, polly
Hi Pam
I can certainly understand how you feel - it's a lot to take in and as you say it very sudden and a shock to the system. I have MG which is currently ocular (which causes double vision) only and many other health issues which have rather overtaken me. I was seemingly fit and well until 2006 when one by one I got diagnosed with various conditions, many of which are endocrine-related.
I have low cortisol, hypothyroidism, hypogonadism, growth hormone deficiency and occasionally high prolactin, all of which have knock-on effects.
But less of me!
Yes, you need to see a good neurologist ASAP.
And, by the looks of things, a consultant endocrinologist too.
Best wishes
Simon
Sorry, can I add that I am not sure if you are seeing endo (crinology) at the moment. If your symptoms are being treated by your GP, I would be tempted to ask for a referral to an endocrine specialist. Have you had any tests at all?
Hi Simon,
So sorry to hear if your condition or should I say conditions. It must be terrible. I’m all new to this. Well I have had hypothyroidism for 11 years but low cortisol and possibly MG is new to me. I’m on an urgent waiting list for The Walton Ctr to be diagnosed for MG or not. I think I may have generalised MG. my whole body is so very weak/heavy. Although it does fluctuate from day to day. On occasions I fall as my legs can’t hold me up then I can’t get up as my arms are so weak too.
My neck is bad too. Recently I had double vision and my jaw muscles went what felt like tight. It’s a bloody nightmare. I was getting on with life like most people then bam struck down literally.
I have had lots of tests. SST and passed. MRI no pituitary issue. CT scan of abdominal ok. Blood tests for cortisol lots of low numbers 68,69,90,102 random. But 9am in the 200’s. Thyroid function is poor recently. TSH 29! T4 9.5 T3 ??
I have a prof in Endocrine but he says he’s no idea why this is happening. So he’s referred me to The Walton Ct Liverpool. I’m waiting desperately for my urgent appt.
sorry to hear your stuff. Did you have any issues with thyroid medication as I have had recently. Also can I ask what medication are you on and how long did it take to stabilise please
Many thanks
Pam
Hi Pam
I have Generalized MG and Hashimoto’s which is Autoimmune Hypothyroidism. I’ve had MG since 2008 with the same symptoms you are experiencing.
My thyroid just turned hypo about a year a half ago. If you have Hashimoto’s its constantly going to fluctuate. It’s important to get your Vitamin D in the top 1/2 -3/4 range for both thyroid and MG. B12, folate, iron and ferritin are just as important. I felt horrible on just T4 medication , as soon as we added in a little bit of T3 with the T4 I felt better. Also I have noticed I feel just as bad under medicated as I did when I wasn’t on any medicine for my thyroid, so I make sure my levels are checked at least every 60-90 days. I feel better when my TSH is between 0-1 and my Free T3 is in the top 3/4 range.
The best thing you can do for MG is rest when you feel tired. Stress is the worst thing. The first 3 years seem to be the hardest. I had my thymus gland removed in 2009 which came back enlarged but no cancer. It didn’t put me in remission but it did reduce my symptoms. Depending on what kind of MG you have will depend on how your body will respond to different treatments. I can tell you hot weather, humidity, hot showers, lemons, extreme weather changes, magnesium supplements, beer - those are a few things that make my MG bad right away. I’m in the United States. The medications that currently have me mostly stable are Mestinon every 4 hours, Imuran 200mg day and I get IVIG treatments every 2 weeks. I was diagnosed when I was 32yrs old and I’m 42 yrs old now. I got very weak before I got stable. There is a light at the end of the tunnel.
Kristy
Hi Kristy,
Thank you so much for responding it means a great deal to me. So sorry to hear your story, and being so young also when it all began for you.
I’m really struggling just lately. It’s a struggle just to key these words. I feel like I’m in melt down. I do feel that each time I take my T4 meds for hypothyroidism that it’s making me worse. I left it out for a week and was nearly back to my old self. Then on day 7 took Levothyroxine T4 again as didn’t want my thyroid to go under. On this day I was on the floor literally. So much so I had to go to Emergency at hospital. They couldn’t find anything, which has been the case for months now.
I’ve had to reduce my T4 daily and find this helps but only very slightly. I tried NDT but that was the same result. Maybe I need just T3. But my Endocrine Professor will not prescribe as the NHS here in UK will not fund it. Only option is to find myself private £600 month plus private Dr fees.
I’m hoping the Walton Ctr here in UK will help me resolve.
All my vitamins are in the high range. I’ve made sure of this. My cortisol is low. But maybe this goes hand in hand with MG??
I hope you are ok today. I’m trying to do stuff but it’s hard. I’m normally out working full time. I have a great job. But not sure for how much longer now.
I’m keeping positive that this’ll get sorted soon.
Many, many thanks. You’re the only person I’ve comeacross with similar issues.
XxPam
Sorry, Pam, for the delay.
I take Levothyroxine for the thyroid issue - 200 mcg.
I take Pyridostigmine for my MG, the maximum dose (120mg x 8 times a day)
I also have hydrocortisone tabs, take testosterone supplement gel and inject Norditropin sub-cutaneously every evening.
When I have high Prolactin, I take cabergoline, but I have been off these for a while.
Your health professional (when you get to see him/ her!) should order some tests for you. I had a glucagon test, which is injected, then the nurses take bloods every 30 minutes to chart your body's reaction to it.
Double vision can be a symptom of Ocular MG (not sure about generalised). I was told the brain can compile a single image from the two individual images from your eyes, but beyond a certain point,the brain can't cope, resulting in double vision.
I wear lenses with Fresnel prisms built in. These prisms do what the brain can no longer do and bring the images from each eye together into a single image. Together with my Pyridostigmine, it gives me a mostly double vision-free day. However, the double vision is worsened by fatigue, so sometimes at the end of the day I get double vision anyway, despite the medication & lenses.
You've said you have no pituitary issues and the CT scan of your thorax is OK, so I guess there are no thymus issues.
When you are taking Levothyroxine, is your T4 figure that low? Or was that the level before treatment?
My Endocrinologist recommends TSH should be between 3.5 and 6.5 and free T4 between 10 and 20.
Your falling is concerning, not only the reason behind it, but obviously the risk of injury. Do you have an alert system if you fall?
Best wishes,
Simon
Hi Simon
Thanks for your supporting message.
My thyroid has gone out of range. It’s normally all within range. My GP put my Levothyroxine up when it was normal, sending me overactive. Then it was reduced again. I did feel better then slightly. I was convinced that the Levothyroxine was making me worse. So I stopped it for a few days. By day 3 it was a miracle, as I felt so much better. I then reintroduced it on day 7. It made me so weak I ended up in A&E. But I have to continue Levothyroxine as no other will be prescribed presently. I want to try T3 but Endo will not prescribe. I have to self fund at £600 month. I can hardly walk. Recently my chest has got heavy, like a brick on me. Mostly on sofa or bed now. Soul destroying from a busy, full time job person.
I’m not sure why this has happened to me seemingly out if the blue. I’m still waiting for my much needed referral to the Walton Ctr to get diagnosed.
Regarding falling, it could cause an issue and I have no alert. But my partner or sister tries to be around mostly.
Sorry you have so many medications to take. Do you live a sort of normal life. Can you work, drive and walk any distance. I’m not sure what to expect.
I have to lay down virtually all day and night.
Many thanks
Pam
Hi Pam
Yes, I have read about T3 and my Endo consultant won't entertain the idea either. Their school of thought is that organs and tissues can convert T4 to T3.
Have you seen this thread? It may help you:
healthunlocked.com/thyroidu...
I'm so sorry this has hit you hard. It can be a struggle to adjust. I was born 3 months prem and starved of oxygen and consequently I have right-sided hemiplegia, a form of CP and mid and high-frequency deafness, along with tinnitus.
But I didn't learn this until my 30's! My Mum thought it would be best if I didn't know. She put me in a mainstream school. I knew I wasn't quite like everyone else because I sometimes struggled to do stuff that others found easy, but thought nothing of it. After all, I never had it, so I don't miss it!! And my conditions have been diagnosed in dribs and drabs, so it has been a gradual process. Not like you, feeling like you've been knocked for six. That must be awful for you.
I take 45-48 doses of meds every day and it can get on top of me! Often, the meds make me feel nauseous then I don't feel like eating so end up eating irregularly which does not help my weight loss.... I have ended up taking tablets to counter the side-effects of other tablets, madness, really!
I can't drive, as I have other visual issues aside from my double vision. And I can't walk far either for various reasons, but I have a mobility scooter, which I ironically call my Tesla. Unfortunately, I had to give up my work and am in receipt of a serious ill-health pension. I am 52.
I often feel tired and listless, not helped by my sleep apnoea! And several of my hormonal imbalances cause fatigue too. One in particular is a triple whammy - it makes me tired, causes weight gain around my middle and causes memory loss.
I have just learnt to do things in very small, bite-sized chunks with rest in-between.
I do manage, but feel guilty because I don't have energy to do stuff with my three teenage boys.
I hope that your debilitating fatigue will diminish and you will feel more energetic soon. Best of luck with your visits to the Walton Centre.
Simon.
Hi Pam
Double vision is usually the first symptom of MG. For me it was my arms and legs and jaw, I also noticed I had a harder time swallowing my food. Taking sips of a cold water after each bite help me when I have trouble. Most start out Ocular and can turn Generalized. Myasthenia effects all the voluntary muscles which can also include the lungs or can make your chest feel heavy.
Here is what I did find with Levo. I will only take the 50mcg pills. They are the only ones that don’t have fillers. I felt much better once I switched to only those and added in the T3
Hi Pam
Double vision is usually a symptom of both Ocular and Generalized MG. Usually the first symptom but not always. Mine started in my arms, legs and jaw. I noticed I had a harder time speaking and swallowing food. Sipping cold water after each bite of food can help if you start having swallowing issues. MG effects voluntary muscles. This includes the lungs. The heavy chest feeling can be from that. Seek help if you find your having a hard time breathing. Most MG patients I know are started on prednisone and mestinon and that helps them a lot even though it has a lot of undesirable side effects.
One thing that I did find that helped me with the Levo was I figured out the 50mcg pills are the only ones that don’t have any fillers. So I only take those.
I hope you get some rest and are feeling better today!! I remember the beginning and I feel for you!! It hit me like a ton of rocks. One day I was working 2 jobs and going to school for nursing and then I got the flu and couldn’t leave my bed. I fell down the stairs. They treated me 9 months for depression and going mute before my angel of a neurologist stepped into my life!! It will get better.
Kristy
Hi Kirsty,
My symptoms started in my legs then my arms. The my middle. Now it’s also st the back of my neck. It’s also most recently in the front of my neck. My cheeks to the front of my neck and upper chest. The other night I felt like I had a brick on my chest. I used to have some muscle use when I got out of bed but for last 2 weeks my legs start to crumble within 2 minutes. I’ve spent all my time on the sofa or in bed. Walking is so difficult. I’m like a puppet and the strings are too slack. Do you know what I mean??
Regarding the Levothyroxine. I’m only on a low dose. It should be 75mcg. But I feel I cannot take more than 50mcg daily. I take a brand Wockhardt I take x2 25mcgs. As they are tiny and look much smaller than other brands. So I thought they’d have least fillers in. If I take any other brand now or higher dose I feel like I’m in serious trouble. I’ve also tried NDT but they didn’t help as Dr gave me 75mcg strength privately.
It’s all a balancing game.
I have had double and blurred vision after reading too long I think. I’ve also had my face dropped on one side, my mouth dropped and my speech was slurred. I thought I was having a stroke. That was scary. I’ve collapsed on the floor several tunes but not fainted. Just my legs giving way and arms too weak to get myself back up. It’s all madness. I’be been working for 44 years and want to carry on. I have a great job that I love, I’m nit sure I’ll het back there!
I’m positive mainly. I’m researching as no Dr can seem to help as yet. I’m listening to my body always and eating healthy food. I feel for my partner who is doing their best for me. We had plans for our future now this.
I hope you’re not too bad today. I’m sorry for such a long message.
Please look after yourself
Much thanks
Pam
Hi Pam
Sorry I don’t check this page a lot and haven’t responded sooner. If you would like my email I would be open to communicating privately?
Your symptoms remind me sooo much of my early days of MG. It’s so difficult. Everyday is different and there is no rhyme or reason to the muscles working or not working. The fatigue was just overwhelming until we figured out a combination of medications that worked for me. And every Myasthenic is different. My right side was most effected at first, my dominant side. There were lots of days I couldn’t even raise my arms over my head. For a while i couldn’t even hold a pen well enough to write. They were also treating me for major depression and had me on Valium which is a No-No and made things twice as bad. I had a droopy eye for a while and still get one when I’m tired.
I understand the collapsing. It’s as if all the muscles in your body just give out at once. There is nothing you can do about it and your helpless laying there, like a rag doll. It’s mostly the muscles closest to my core that get effected. My thighs, upper arms, neck muscles - a good neck pillow can do wonders in a car ride and even sleeping in bed.
I do hope you can be seen soon and at least be tried on a corticosteroid or mestinon. That usually helps most people short term and right away until more permanent treatment is decided on.
Hope you doing ok today!!
Kristy
Regarding neck issues, I have to sleep on my back and someone very kindly bought me a Tempur shaped pillow and I find it fantastic.
Hi - I was diagnosed with Mg in 2014 after sudden onset ptosis and double vision which progressed to neck, bulbar & legs. Thinking back it started with blurring vision months before. I am now just about stabilizing after 4 years of immune suppressants and Pyridostigamine bromide (Mestinon).
There is a blood test for AChR antibodies which is usually the first test on the protocol of the Neurological Society of UK Everyone I know with Mg is diagnosed and treated by a neurologist and the Centres of Excellence in the UK are in Oxford and London but I there is also a good Centre in Manchester. Many people - up to 40% test sero-negative and getting a diagnosis is the hardest and slowest thing for many patients. There are other known antibodies but they are much harder to get tests for.
May I suggest you look at the Myaware website - if you haven’t already - loads of info and help - free to join but also join the FB Mg pages of Myaware and a page called Myasthenia Gravis UK - loads of support and help available.
facebook.com/groups/9324649...
Please do check out he drugs to be aware of page as many ordinary drugs exacerbate Mg and should be avoided.
Please also know if you struggle with your breathing you should to go to A&E sooner rather than later as this can be a sign of a serious Myasthenic Crisis. A good rule of thumb is that if you can count out loud to 20 or more on one breath you are OK. 15-20 rest and seek advice from GP, 10-15 make your way to A&E - less than 10 ring for immediate help.
Most medics know very little about Mg so it is beholden of the sufferer to be well informed you may find this link helpful in pushing for the right tests in seeking a diagnosis.
bestpractice.bmj.com/topics...
I don’t see chest CT on that list and that was certainly the first test I had and everyone with suspected Mg should have - looking for enlarged thymus gland.
Also know that once you have one autoimmune disease you are much more likely to have another.
Hi CDresmer,
Thank you so much for all the information and links. I’ll have a look at these. I haven’t been diagnose yet. After reading stuff on line I will be very surprised if I’m not diagnosed with it. I did go to see a private consultant this week in desperation. He is a neurologist. However, he was adamant that I do not have MG. The reason he believes this is he said all MG patients have blurred and double vision mostly all the time. My symptoms started in my legs then moved to my arms and neck. I have had my face dropping on one side with my mouth too. I could hardly speak and my words was slurred. I thought I was having a stroke and so did my partner. But not. I’ve had it heavy on my chest once, like a brick laying on it. Ive had weeks were I could hardly walk and crawling was easier. Ive has to lay flat for ages. I have bad headaches mainly on the right side. The consultant then went on to say that I had conversion disorder. Basically it’s in my mind. Gosh I was taken aback. He then said although nothing would come of it I should have the single fibre test costing £1k and a spine MRI £1k further. I asked if I could have the blood tests as this was only £50. He said no. There is no point.
I was bewildered to be honest. I left. Within 10 minutes of me arriving home at 8pm after the consultation, he phoned me asking me to go ahead with the tests and reeled off the costs again. I said no I’d like the blood tests first please. He said I’d have to wait for an NHS appointment first and his only available date was 10 Sept. all odd. I called my GP the next day to see if he can organise the bloods via the consultant. I’m waiting now to hear back. He was soooo adamant I do not have MG ref the eyes. Then he’s pushing hard for the tests. Odd.
Anyways I will get the bloods done hopefully via the NHS then the single fibre electric test.
I don’t want MG I just need an explanation.
Also I’ve just realised that for 10+ years I’ve been prescribed a drug by my GP for my skin. It’s Erythromycin. Which I read can bring on MG or cause it to flare. Could I have drug induced MG!?
Thanks again for your brilliant reply. I’ll look at the links now. I have spoken to the lovely lady at Myaware this week also. She was very helpful too.
Cheers,
Pam
That neurologist was a charleton.
You do need a neurologist who specialises in Mg and they are few and far between,
Had you also considered Guillain Barre? It’s not an absolute rule but I have heard doctors refer to the difference as GB as ascending muscle weakness as is starts in legs and works upwards and Mg descending ie starts normally - but definately not always - in the head and works downwards which is certainly the most usual pattern. However - there are 4 types of Myasthenia and certainly Lambert’s Eaton has a different pattern and treatments - info on Myaware site,
Hi,
I think he's a charleton also!!
Thank you for your reply and information.
I've looked up Guillain Barre and Lambert’s Eaton. Although there are a lot similarities, the one thing that I do not have is pain or stiffness in anyway.
If I do have MG I think its definitely generalised. I spoke to the lady at Myaware she was saying also that she does not suffer with it in her eyes and it started in her legs.
I was prescribed Erythromycin for ten years and now I wondering if this has had a negative effect on my body. Could it be drug induced I'm thinking now??
hi pam what a nightmare for you and awful symptoms, I pray you were properly diagnosed and medicated, and hope your life quality has substantially improved, thank you so much for sharing your experinece as all feedback helps one another, very best wishes polly
misdiagnosis 🤷♀️
general anaesthesia