Muscle weakness

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Please can someone advise, I am a 29 year old female and I was diagnosed with Hashimoto's Thyroiditis at the start of the year. I have been having problems with my right eyelid in that over the course of the day it progressively becomes droopy and the only thing that relieves it is when I close it. When it becomes droopy it makes my eye feel like there's something in it and I end up rubbing it. It's only when I look in the mirror that it's droopy.

In January  my endocrinologist ran an autoimmune profile (but not for every single antibody) and rheumatoid factor and these are the results of it:

Rheumatoid Factor - 9IU/mL (<20 negative)="" hep2="" -="" positive="" type="" -="" speckled="" anti-ds-dna="" -="" 7iu/ml=""><30 negative)="" (positive="" anti-nuclear="" antibodies="" but="" no="" significant="" disease="" association="" found)="" ena="" screen="" -="" negative="" autoimmune="" profile="" anti-nuclear="" abs="" -="" positive="" anti-smooth="" muscle="" abs="" -="" negative="" anti-parietal="" abs="" -="" negative="" anti-mitcohondrial="" abs="" -="" negative="" anti-lkm="" abs="" -="" negative="" anti-thyroid="" peroxidase="" abs="" (anti-tpo)="" -="" 141="" kiu/l=""><34 negative)

i am posting here because i have a suspicion that i have myasthenia gravis. not only have i got the problem with my eyelid but i tried to follow some physical tests for muscle weakness such as holding my arms out straight in front of me and deep knee bends.the results of these home tests i did:

holding out arms stretched in front for 60 seconds - pain in both arms when it came up to the 60 seconds and left arm dropped slightly

10 deep knee bends - did all 10 knee bends but the last 3 made my legs feel weak and shaky

5 sit-ups (sitting from lying down) - could only manage 4 sit-ups

i have an appointment with my gp on friday and since this has now appeared i'd like to mention my concerns to them.

my main concerns are :

wouldn't my endocrinologist have tested me for myasthenia gravis if it's an autoimmune condition? if so what antibodies would she have tested and would any of the ones i had tested have shown i have myasthenia gravis?

who do i need to request to see to get a confirmed diagnosis?

if it is indeed myasthenia gravis would it be because my current autoimmune condition made it worse? i have read that this is possible and i became very hypothyroid yesterday as i had very bad reynaud's flares when out and about.

thank you! x negative)="" i="" am="" posting="" here="" because="" i="" have="" a="" suspicion="" that="" i="" have="" myasthenia="" gravis.="" not="" only="" have="" i="" got="" the="" problem="" with="" my="" eyelid="" but="" i="" tried="" to="" follow="" some="" physical="" tests="" for="" muscle="" weakness="" such="" as="" holding="" my="" arms="" out="" straight="" in="" front="" of="" me="" and="" deep="" knee="" bends.the="" results="" of="" these="" home="" tests="" i="" did:="" holding="" out="" arms="" stretched="" in="" front="" for="" 60="" seconds="" -="" pain="" in="" both="" arms="" when="" it="" came="" up="" to="" the="" 60="" seconds="" and="" left="" arm="" dropped="" slightly="" 10="" deep="" knee="" bends="" -="" did="" all="" 10="" knee="" bends="" but="" the="" last="" 3="" made="" my="" legs="" feel="" weak="" and="" shaky="" 5="" sit-ups="" (sitting="" from="" lying="" down)="" -="" could="" only="" manage="" 4="" sit-ups="" i="" have="" an="" appointment="" with="" my="" gp="" on="" friday="" and="" since="" this="" has="" now="" appeared="" i'd="" like="" to="" mention="" my="" concerns="" to="" them.="" my="" main="" concerns="" are="" :="" wouldn't="" my="" endocrinologist="" have="" tested="" me="" for="" myasthenia="" gravis="" if="" it's="" an="" autoimmune="" condition?="" if="" so="" what="" antibodies="" would="" she="" have="" tested="" and="" would="" any="" of="" the="" ones="" i="" had="" tested="" have="" shown="" i="" have="" myasthenia="" gravis?="" who="" do="" i="" need="" to="" request="" to="" see="" to="" get="" a="" confirmed="" diagnosis?="" if="" it="" is="" indeed="" myasthenia="" gravis="" would="" it="" be="" because="" my="" current="" autoimmune="" condition="" made="" it="" worse?="" i="" have="" read="" that="" this="" is="" possible="" and="" i="" became="" very="" hypothyroid="" yesterday="" as="" i="" had="" very="" bad="" reynaud's="" flares="" when="" out="" and="" about.="" thank="" you!="">

i am posting here because i have a suspicion that i have myasthenia gravis. not only have i got the problem with my eyelid but i tried to follow some physical tests for muscle weakness such as holding my arms out straight in front of me and deep knee bends.the results of these home tests i did:

holding out arms stretched in front for 60 seconds - pain in both arms when it came up to the 60 seconds and left arm dropped slightly

10 deep knee bends - did all 10 knee bends but the last 3 made my legs feel weak and shaky

5 sit-ups (sitting from lying down) - could only manage 4 sit-ups

i have an appointment with my gp on friday and since this has now appeared i'd like to mention my concerns to them.

my main concerns are :

wouldn't my endocrinologist have tested me for myasthenia gravis if it's an autoimmune condition? if so what antibodies would she have tested and would any of the ones i had tested have shown i have myasthenia gravis?

who do i need to request to see to get a confirmed diagnosis?

if it is indeed myasthenia gravis would it be because my current autoimmune condition made it worse? i have read that this is possible and i became very hypothyroid yesterday as i had very bad reynaud's flares when out and about.

thank you! x>

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6 Replies

  • Posted

    Dear Star

    You are right to be seeing your GP.  In the meantime, if you experience any more severe symptoms like numbness, weakness or visual disturbances, ring 111 and go through their triage to assess how urgently you need to be seen.

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    • Posted

      Hi Lucy thanks for your reply. I spoke to my GP and he has said there is nothing wrong with my eyelid itself. I did mention to him that I had weakness in my arms and legs but he shrugged it off. I get pins and needles in my feet and legs but this comes and goes by itself. As for visual disturbances I don't think I get many but I get double vision when I looked straight ahead when my GP instructed me to do so.

      But yes, if I experience any further problems I will call 111.

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    • Posted

      Unfortunately my GP practice is incredibly busy due to the Christmas period as well as so many of the usual GPs being on holiday/sick leave and having locums put in their place. I have lots of other symptoms that need reviewing but I have had so much trouble with GPs reviewing them in the past that I've stopped. One GP kept saying he'd review at the next follow-up and when I went back at the next follow-up he said exactly the same thing. I didn't think it was my place to correct him. I am at my wit's end in getting the GPs to listen to me and I don't feel able to discuss any problems with them - not because I don't want to get better - but because I am afraid they will do the same thing as the GP in the situation I just mentioned.

      Might it help if I write things down before the appointment - even if they are several concerns I have? I have tried this but have only done this for up to 5 concerns. I have about 6 or 7 times more than that so I'll have lots of appointments to follow each thing up...

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    • Posted

      Hello - your experience is sadly a familiar one.  Take in a handwritten note detailing your symptoms.  Ask them to scan it onto your records, as you have now had several consultations and do not appear to have been able to explain the depth of your concerns.  Ask what you need to do to get followed up.  If necessary look at the NICE guidelines for investigation.

       

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    • Posted

      Thank you Lucy for your reply. I am tempted to complain but I've already logged a complaint with my endocrinologist about things. I might look at the NICE guidelines as well.
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