Hello, I am over in the UK and have a history of autoimmune diseases. I have 8 so far, mostly not serious, including Alopecia, celiac, asthma, B12 deficiency etc and more interestingly addisons disease. I am 47 year old female and never present properly and usually have a hard time getting diagnosed. The delay in getting my Addisons's disease diagnosed nearly killed me as the consultants just would not accept evidence as one blood test was not conclusive as one of my medications was skewing the results and the consultants would not accept this.

Anyway eventually I was diagnosed, after I wrote a 27 page paper and found someone who would redo the tests whilst I stopped the 'offending' drug, and hoped that everything would start to look up. Sadly over the summer in very hot weather I got extreme muscle weakness - I was unable to hold my head up, use my arms and my eyes kept closing and eyelids drooped. With any stress or tiredness things would be worse and I could get stuck and need 3 other adults to move me as I could not get legs to move or keep my body up.

My gp thought it was MG and I saw the consultant last week. He was not to sure and thought it was hyperthyroidism caused by me overdosing on t3 - a hormone I take as I am hypothyroid. This is possible I suppose but before the addisons was diagnosed the t3 was blamed for my symptoms, so I need to be proved to that it is not MG and that it is t3 excess.

So, sorry for long preamble, what I would like to know is how one can tell the difference. When I saw the consultant I was pretty stressed which meant that my arms and legs were very weak, lips were not working and I could not hold my head up, and consultant implied that it was too extreme to be MG.

I am awaiting blood test results but I rarely show up with antibodies for things I do have and do have antibodies for things I don't have! I know that some folks do not have positive antibodies. I am going to have emg tests but have not been able to find out if these tests would be able to differentiate between MG weakness and thyrotoxic weakness. Does anyone know? The blood test might prove, if it is positive, that it is a definite MG diagnosis, but in case I do not get this I would like proof that it is one or the other....

Are there any other things that could help me be absolutely sure which one is causing my problems.... I do not want it to be a new illness and if it is excess t3 then I will have to cut this down which will cause other problems, but I do not want to be 'fobbed off' again by consultants.

Thanks for reading! Any comments really appreciated.

Many thanks, MrsC

I don't have a clue what to tell you except that I can surely sympathize with your problems getting a proper diagnosis. I hope things work out for you and you get better.

I'm not impressed by the idea that your symptoms were "too extreme to be MG"! MG can most definitely be that severe.

Did you have other symptoms of hyperthyroidism? For example, was your heart beating very fast? Were you trembling uncontrollably? Is your hair falling out? Are you having trouble sleeping, and is your mind racing, and are you very anxious? These are typical symptoms of hyperthyroidism (from the literature and from my own experience! I have Graves' disease).

Hyperthyroidism can cause weakness, but I can't imagine it could be that severe in the absence of the typical symptoms of even mild hyperthyroidism.

There is a condition called thyrotoxic periodic paralysis which causes weakness like you describe in conjunction with hyperthyroidism. I don't believe it can be brought on by overdosing on T3, but I don't really know. It might be worth looking into.

I hope you get some answers, and I hope you can get to a neurologist who specializes in neuromuscular disorders.

Abby

Thank you very much!

MrsC

Hi, I have experienced both MG and thyroid weakness.
Hypo and hyper thyroid weakness, the hyper first because of Graves, later because of too much t3.

A very simple description ( my own, not scientificly or something):

Hypo thyroid weakness: heavy feeling, feel slow and cold. Everthing just feels slow; bowels, thoughts, bloodstream, heartrate, everything.
Hyper thyroid weakness: a weakness that feels like it is caused by overdoing it. Like i've run a marathon without any training. But also other things like anxiety, heartrate even in bed over 120, etc. It is more an overall weakness.
MG weakness: overall weakness, combined with typical weakness: when I think about it, I can say: my weakness is now most severe here and here. For example: now it is more my breathingmuscles and neck. This morning it was mor my mounth and hands, etc.

So with thyroid caused weakness my weakness was never the first or most obvious symptom, wereas with MG it is. With the thyroid it was just like an overall over- or underload. So with co-excisting symptoms.
The same with reumatoid muscleweakness: it is more an overall weakness and not my first, most prominent symptom.

However, since you have more AI diseases, they really need to look into this...

Anyway, my worst weakness is defenitly with MG, so too extreme to be MG is the most retarted thing. I mean, it means severe weakness.... It's in the name! The thyroid weakness (and my thyroidproblems were so severe I had to be admitted, had cardiac arrest, and my bloodtest were too high and too low to be measured even) never caused me to need breathingsupport.

Thank you Abby for taking the time to reply.

I don't have any of the other signs of hyperT apart from TSH is suppressed but it has been for years as medication provides my thyroid requirements so my body doesn't need to make it. There is quite a bit of controversy in the hypoT community about this... do we go on blood tests or how the patient feels. T3 is not a common mode of treatment either - but I can't function without it. So the background is that the endos do not like the fact that I take T3 and the neuro I saw is also an endo!

I have had hyperT symptoms in the past once when I accidentally took too much T3 - it was not pleasant - I was jumpy, could not keep still etc. Sadly mild tachycardia and tremor are also symptoms of adrenal insufficiency (Addison's Disease) so that is why whenever I get these symptoms it is put down to the T3 rather than adrenal problems. These can be resolved with taking hydrocortisone but appear under stressful situations (like at a consultation!). Obviously it could be hyperT - I have started a new hormone that has meant I can take less steroid and HRT so it could well mean I was taking too much T3. I just need to know! The muscle weakness came on pretty suddenly and dramatically with the heat (i am not particularly strong and my arms had been struggling and I found it difficult to keep my head up when having physio but I some charming person smashed into my car a few months ago so I have had neck problems; physio now thinks it is MS too; MRI scan on neck showed no nerve involvement) and I don't know if thyroid muscle problems are sudden or slow to develop, or if droopy eyes also occur in hyperT. I do not have the hyperT stare.

I have heard of TPP and looked into it a bit, but again I can't find out whether EMG tests would have different, same or other abnormalities depending on whether the cause is MG or thyroid excess. If the test does show difference, then that is fine, I'll accept the results whatever they may be. But if the results just show 'a problem' but not where/how then I may have to think about how to prove it either way. I just don't know who to ask and where to find out. I can't find it out from the literature I have read. Hope this makes some sense...

May I ask what you had first the MG or the Graves or did they come at the same time? When did your muscle symptoms kick in and how were you diagnosed.

Anyway thank you once again.

MrsC

Thank you Raven, this is just the sort of thing I was looking for! I'm sorry to hear you've had a really rough time, sounds dreadful.

I understand exactly what you are saying. The hypo weakness I know very well! And from your description I feel it is more MG than hyperT but when I was in the consultation it was all over!!

I think the consultant felt (and this is me guessing after the event, trying to rationalise it rather than having a breakdown!) that I could not show fatiguability because I was in such a state. I don't ever present well - either too ill or too well!

May I ask how they untangled your issues? And what your thyroid state is now? Do you see endo and neuro or are they the same (mine is the same guy here in the UK).

Thanks once again,
MrsC

Mrs. C,

I got Graves' disease 16 years ago, after the complicated birth of my daughter. I have been on and off thyroid suppressants ever since (I never had my thyroid radiated). Three years ago last spring, I went hyper again, after several years of being normal without the drugs. I went back on the suppressants. Then several months after that, I got my first MG symptoms, after I took care of five of my kids with the swine flu for three weeks but never got sick myself.

When I had Graves' disease, it took a while to diagnose. At the time I remember just one symptom of muscle weakness: I had trouble standing up again after kneeling down before entering the pew at church. When I got MG, the muscle weakness was much, much more severe. The first symptom I noticed was that my legs got so weak I collapsed to the floor quite suddenly when I was just standing there talking. MG affects my legs, arms and hands, trunk and back muscles, neck, and swallowing and occasionally my eyes.

My antibody blood test for MG came out negative three times. I also tested negative for MuSK and LEMS antibodies (you should be tested for those, too!). Then I tested borderline twice on a single fiber EMG. This is not the same as a regular EMG. In a single fiber EMG, the doctor inserts a thin needle and leaves it there for several minutes while he asks you to gently clench the muscle. Then my neuro sent me to an extra-special-specialist--a neurologist with a special expertise in MG. I had to travel. This doctor did his own SFEMG and said it was strongly positive.

If you know what it feels like to be hyperthyroid, and you don't feel like that now, it's pretty good evidence that you're not hyperthyroid, or at least not severely. Can't they just test the levels of T3 in your blood?

I hope you can get to a doctor who specializes in MG. Getting diagnosed with MG, especially if you don't test positive for the antibodies, takes a lot of persistence. Please know that MG is nothing to fool around with. If you can't swallow or have trouble breathing, that's a medical emergency.

Abby

Hi there,
Well..for me my weakness caused by other diseases (ra, thyroid, cancer, heartproblems and so on) was just a different weakness from the mg one. It is like I finally know the feeling of true muscle weakness and muscle fatigue. The other ones gave (give) me more an overall weakness. Like tired-weakness, kind of breakdown weakness.
And MG gives me more, "wtf I can't even chew on this cookie / turn on the page / climb the stairs / breath in weakness. Real muscle weakness, you know: your head to heavy to lift your neck, or a face with no expression.

A doc who is neurologist and endo at the same time? Sounds cool
Nah, I just have a whole bunch of docs, I believe in 3 years Ive seen over 30 specialist probably more.
Well, my thyroid was okay till few weeks ago, my blood says Im hypo again.

Ha, well, how they untangled it? Well, with the first 3 or 4 diseases they just said you are tired / crazy / stressed (the usual). Until they did (after weeks MG even months of begging, because I felt something was wrong) simple lungfunctiontests or bloodtests and i was rushed to the hospital.

It is very MG typical to have weakness one hour, the next hour (when you have your appointment) it is gone! I never experienced this with other weaknesses, so maybe thats useful?

Good luck!

RC - Now you have just made me laugh just when I needed it most...... (Thanks!)
A