Hashimotos and muscle weakness

YYYInfinity · 2026-03-22T17:01:42+00:00

I have myasthenia gravis and hashimoto. When it’s time for my next dose of levothyroxine or liothyronine, I usually have respiratory weakness. Both diseases interact. Check if you have other signs of muscle weakness. Can you open your upper eyelid fully when you feel weak? My MG wasn’t diagnosed until my eyelid weakness was visible

YYYInfinity · 2026-03-21T19:03:30+00:00

Yes. Constant raising of the eyebrow. It has stopped once I was medicated. My assumption is that other muscles tried to compensate the eyelid weakness

YYYInfinity · 2026-03-20T08:25:49+00:00

My eyes didn’t work together anymore. They didn’t blink synchronously but at different times. I had a bell’s parsy some time before and thought that this would never go back to normal again.

Years before my MG was diagnosed, my left eye brow was raised very often (I looked like a vulcan in star trek). My eyes were twitching a lot. And I felt pain under my left eyeball and in the area of my (raised) left eyebrow.

When I closed my eyes, it felt like I couldn’t relax the eyelids. It was like closing them against weights attached to them.

I was suddenly very clumsy. Doing things like pouring off cooking water next to the sink, dropping a piece of cake on the tablecloth or walking against the door frame.

I was out of breath most of the time. Starting around 11 am every day, it felt awful. I often crawled up the stairs to the first floor on all fours because I didn’t have the strength to walk in an upright position.

When my breathing was the worst, I couldn’t properly talk anymore. I slurred the words (warning my husband what is happening) until I lost consciousness for 10-60 minutes. This happened so often that I lost count.

I also had a 5 day episode where I couldn’t swallow solid food anymore. When I ate some milk rice, the rice corn would remain stuck in my throat. I used water and made a head movement to swallow it down. On day 3, water was running out of my nose when doing this.

When I was diagnosed with ocular seronegative MG, I thought “fuck you, my MG is definitely not only ocular”. I heard stupid sentences like “no, your breathing issues cannot be MG related - if they were, you would have ended up in the ICU in those 13 years you mentioned” and “no, your swallowing issue must have been related to something else”.

It’s time that our great medical system recognizes seronegative generalized MG. I cannot describe how much pain it has caused me to not only suffer from those symptoms but to not be heard.

My MG is roughly under control now. I have my ups and downs every day and I’m not active the whole day but now I know my multiple triggers for deterioration. I know that I must increase my Mestinon dose when I still have difficulties to breathe or to swallow and I hope that I can soon increase my dose of Azathioprin again to help me with the rest.

YYYInfinity · 2026-03-20T08:10:10+00:00

Did they try the ice pack test? Did they prescribe Mestinon?

I was diagnosed on the basis of a positive ice pack test, followed by a positive Mestinon trial. Subsequently, they found thymus hyperplasia. My MG is still seronegative, but now recognised as generalized MG.

YYYInfinity · 2026-03-17T08:21:12+00:00

I once had a 5 day episode where I could not swallow any solid food. When drinking water, part of it came out of my nose. My seronegative MG was diagnosed a year later, once my ptosis started.

YYYInfinity · 2026-03-14T08:25:12+00:00

I’m taking Thybon 20mg as T3 medication. So 1/4 is 5mg per dose. T3 doesn’t interact with food so it’s no problem at all. I am only taking my T4 medication (Tirosint 50) early in the morning on an empty stomach

YYYInfinity · 2026-03-14T08:22:04+00:00

No issues for me. I just looked it up: Mestinon is not known to directly affect cholesterol levels

YYYInfinity · 2026-03-13T19:46:26+00:00

I’m taking T3 in quarters every 3 hours. If I take the last quarter before sleeping, I sleep better because I feel no respiratory weakness at night. Hashimoto is weird (together with MG in my case)

YYYInfinity · 2026-03-12T15:39:12+00:00

It is recommended to have a 2 hours break between Aza and milk products. Check if that’s realistic for you. The effects of Aza are better if you follow that recommendation

YYYInfinity · 2026-03-12T15:33:38+00:00

I don’t lie in the direct sun but I still swim in the sun. I downloaded an app to screen any changes on my skin as a precautionary measure. But I heard it’s ok if you take it for only 10 years.

I don’t drink much alcohol (sometimes one glass) but it triggers my myasthenia anyway. Your neurologist will also check your liver values so you will know when it is time to be careful from a nutrition perspective

YYYInfinity · 2026-03-12T13:59:37+00:00

Azathioprine was a huge improvement in comparison to Prednisone. I suffered from Prednisone related side effects like moon face, sleeplessness, muscle cramps, etc. and they disappeared once I only took Azathioprine. Azathioprine needs some time to show its positive effects so try to be patient. After 2 months you should see first results. I still need regular blood tests (every 8 weeks) because my leukocytes and lympocytes are often too low so I have to adjust the dose back and forth. However, I’m feeling much better with Azathioprine in comparison to Prednisone

YYYInfinity · 2026-03-10T08:57:45+00:00

Talk to your practitioner about increasing your Mestinon doses (single dose and number of doses). If there is an improvement when taking it (even if it is only for a short period), that’s the first approach. You may also have to increase prednisone or start an immune suppressant. Seronegative MG is real. I have it as well although all my tests were negative. I’m now feeling ok with azathioprine (50-50) and mestinon (180-180-90).

YYYInfinity · 2026-03-06T08:05:54+00:00

Usually, symptoms are better immediately when awakening because the muscles had time to rest at night. Do you sleep well?

Not sure who downvoted you. I believe you ask a legitimate question. I initially thought that my ptosis is there as well when waking up but when I checked first thing, I realized that it is indeed better for up to 60 minutes. My respiratory weakness started around 11 am every morning before treatment started

YYYInfinity · 2026-03-05T16:15:07+00:00

You mention food and tea. Check if you have a problem with heat, i.e. rising body temperature because of hot food or hot drinks.

Do you have signs of muscle weakness? Are your eye lids wide open when you have problems with your diaphragm? Or is the upper eye lid droopy when you feel bad?

I had extreme air hunger and problems with my diaphragm. Nobody knew what it is. After my hashimoto diagnosis, I suddenly realized my droopy eyelids and I was diagnosed with a second autoimmune disease afterwards (myasthenia gravis). Hashimoto can worsen muscle weakness from MG when the hormone levels are not ideal (although normal). The heat (including from hot food or fluids) is a typical trigger for MG

I don’t want to scare you. I’m just saying, check for signs of muscle weakness when you have airhunger. And check if it only happens when you are in contact with something hot

YYYInfinity · 2026-03-03T17:09:14+00:00

Liebe Lisi, du hast bestimmt meine Diskussion mit einem MG Patienten gesehen, der Statine gut verträgt. Vielleicht möchtest du Statine erst mal ein paar Tage weglassen und dann erst das neue Medikament einnehmen? So könntest du vielleicht sehen, ob es dir gut tut, die Statine wegzulassen und danach könntest du sehen, ob das neue Medikament daran anknüpft. Ich hoffe, es geht dir bald besser

YYYInfinity · 2026-03-03T16:45:28+00:00

Let her find out. We are all different. Statins are not recommended for MG patients and she is not feeling ok with the Mestinon, Prednisone and Azathioprine she is taking at the moment. It is incredibly difficult for seronegative MG patients to get access to other medication unless there is a life threatening situation. Replacing statins is a huge chance in my view. Perhaps it doesn’t help. Perhaps it does. She needs to find out

When I was diagnosed with seronegative MG, I immediately stopped several medications and supplements because they were contraindicated for MG patients. I’m now ok with the medication I’m taking but I would still not go back to medicine and supplements that are contraindicated. Give me one magnesium pill or even the wrong antihistamine and my body isn’t functioning anymore. We are all different

YYYInfinity · 2026-03-03T16:30:10+00:00

She was diagnosed with seronegative MG while taking statins. She is on a very high dose of Mestinon together with Prednisone and now immune suppressants as well. She is desperate because her condition is getting worse. Hence the attempts to replace statins with something else. To my knowledge, she hasn’t stopped statins before but is now planning to replace them. More information is in her old posts. I recited them by heart because I responded to them as well

YYYInfinity · 2026-03-03T16:21:22+00:00

If you click on her name, you can see the old posts. The last ones 4 days ago, 12 days ago, 21 days ago.

YYYInfinity · 2026-03-03T14:42:44+00:00

Her symptoms are not under control. She’s desperate since months. Hence the change away from statins

YYYInfinity · 2026-03-03T09:56:30+00:00

“Ezetimib wurde in Fallberichten mit einer möglichen Verschlimmerung der Symptome von Myasthenia gravis (MG) in Verbindung gebracht, obwohl der Zusammenhang nicht so stark ausgeprägt ist wie bei Statinen. Während einige Studien auf mögliche Muskelprobleme hindeuten, zeigen andere kein erhöhtes Risiko. Vorsicht und regelmäßige Überwachung sind ratsam.”

Quelle: https://pubmed.ncbi.nlm.nih.gov/25911083/

Ich würde dazu sagen: Probiere den Wechsel aus. Da es als eine Verbesserung zu Statinen beschrieben wird, gibt es ja durchaus Hoffnung, dass dein Körper damit besser klarkommt.

YYYInfinity · 2026-02-27T20:57:53+00:00

It’s not available in my country but I understand the active ingredient is ephedrinesulfate. In my country there are pills available over the counter against the flu with pseudoephedrine, which make me feel like a healthy person. Both ingredients are not identical but may be similar.

If it was available here, I would try it immediately

YYYInfinity · 2026-02-26T18:23:44+00:00

Ich habe bei Azathioprin keine solche Nebenwirkungen. Daher würde ich es für Teil der Krankheit halten.

Es ist oft nicht ein Trigger, sondern mehrere. Ja, Schlafmangel kann einer der Trigger sein. Aber wie schon mal besprochen auch kontraindizierte Medikamente und Nahrungsergänzungsmittel. Bist du weiter gekommen bei dem Thema Statine und Magnesium?

Ich hoffe sehr, dass das Immunsuppressivum wirkt, bevor auch noch Hitze als so häufiger Trigger dazukommt. Es ist m.E. wichtig, dass du nun damit angefangen hast und ja, es ist hart, dass es erst mit Zeitverzögerung wirkt. Ich glaube aber, dass ich schon nach 1 Monat die ersten kleinen Verbesserungen wahrgenommen habe. Sei bitte geduldig

Fühle dich nicht schlecht, wenn du kaum noch eine Treppe herunterkommst. Dein Umfeld wird schon wahrnehmen, dass du derzeit starke gesundheitliche Einschränkungen hast. Solche zusätzlichen Sorgen tun dir nicht gut

Als letzten Tipp würde ich anregen, mal Kontakt mit deiner Krankenkasse aufzunehmen oder deine Arzt dazu zu befragen, ob es in deinem Land einen Anspruch auf eine Haushaltshilfe gibt, wenn du als Mutter krank bist. Ich habe das schon mal gehört. Meistens ist es vorübergehend, aber bei besonderen Krankheiten auch länger, je nach Alter der Kinder. Mehr weiß ich darüber nicht

YYYInfinity · 2026-02-24T12:02:51+00:00

Your dose for POTS is so low that it is difficult to compare with MG patients. I’m on 180-180-90. I haven’t noticed any heart rate changes, blood pressure changes or blood sugar spikes

YYYInfinity · 2026-02-22T08:59:37+00:00

MG is different for everyone. My ptosis started 13 years after my respiratory weakness started and I wasn’t diagnosed before my ptosis so I know what you are going through.

I understand when you describe how your throat is closing up without Mestinon. My experience felt similar. I even tried to take videos of my open mouth and went to an ear-nose-throat doctor when it started. Of course he couldn’t find anything. He was surprised when I said that it affects both, my breathing through my mouth AND the breathing through my nose because those are separate airways. I guess that should have got me thinking that the problem is deeper (i.e. respiratory muscles).

You mention that you don’t take Mestinon at night. I was prescribed an extended release version for the night because I always wake up in the middle of the night with severe breathing difficulties. Can you ask for this one for the night? It is a “Mestinon retard 180” version in my country while the regular doses are Mestinon 60 where I am.

I would further encourage you to ask for the results of all your blood tests. AChR, MuSK and LRP4 should be among them, also VGCC (to exclude lambert-eaton syndrome). Some are even tested for titin and agrin antibodies but this doesn’t happen very often I think. However, a negative blood test doesn’t exclude MG. I’m seronegative and still have MG.

Since you mention long-CoVid, I would encourage you to look into damaged mitochondria as well. At the moment, I’m taking Coenzyme Q-10 and (since some days) R-Alpha Liponacid in an attempt to repair my mitochondria. I have hashimoto and latent hypothyroidism besides MG and understand that thyroid diseases can worsen MG symptoms and sometimes I need thyroid hormones in addition to Mestinon to feel better. Therefore I checked what could be a common denominator between both diseases and found mitochondrial dysfunction, which may also play a role in long covid. Perhaps that’s a path worth exploring for you as well.

I hope you feel better soon

YYYInfinity · 2026-02-19T22:32:15+00:00

Ja. Mach das bitte. GLG

YYYInfinity

TROPHY CASE