Generalised myasthenia Gravis with hypothyroidism

[McPammy]

Has anyone suffered generalised myasthenia Gravis please

For 3 months I’ve had severe issues with my muscles not supporting me

I have had double vision and blurred vision.

My complaint is mainly in my neck, arms, legs and midriff. I can’t walk hardly. I sometimes get it in my face muscles and speech can be effected.

My heart rate has been in low 40’s and my cortisol level down to 68 on a number of occasions

I’ve also got hypothyroidism. This is to do with the Thymus

My uncle had MG but he’s not around anymore to discuss it with.

Just wandering if anyone out there has this too.

I have a long awaited appointment with musculsr neurologist on 11 Sept. that will be 14 week wait.

Many thanks

Pam

[SlowDragon Administrator]

You sound very hypo if pulse is that low

What are your most recent blood test results

It's common for Levothyroxine to become less effective as we get older. Many patients need the addition of small dose of T3.

First step is full testing

TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[McPammy in reply to SlowDragon]

Had a multitude of bloods done. Only issues are:

B12. Now had loading

T4 9.5 after deliberately reducing Levothyroxine

TSH 22 after deliberately reducing

Cortisol random - various times 68, 69, 92, 102. Also passed SST as border line Addison’s. Under investigation currently. Waiting neuro muscular appt at The Walton Ctr.

Meds were deliberately reduced due to bad reaction suddenly after being on Levothyroxine for 11 years. Bad reaction is complete loss of muscle strength. Have to lay flat all day and night.

[SlowDragon Administrator in reply to McPammy]

So if your TSH is still this high that's likely underlying cause

Have you had dose increase, tried different brand or been offered T3 instead of Levo, or in addition if FT3 is low

Folate, ferritin and Vitamin D need to be optimal as well as B12

[McPammy in reply to SlowDragon]

My thyroid levels were all optimum before reducing a month ago. Reduced on purpose. I was very ill while the thyroid was ok. with low cortisol and something badly wrong with my weakness in my limbs, neck and middle. It could be generalised myasthenia Gravis.

Vitamin D is repleat as went to Caribbean just before all this began. Also folate was good.

I have asked for T3 without any luck as yet. My private professor said to try NDT which I have and that was no different for me sadly. As I’m a veggie I reverted back to wokhardt Levothyroxine recently.

Thanks

[SlowDragon Administrator in reply to McPammy]

If you're vegetarian then presumably you supplement B12 and daily good quality vitamin B complex

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

You can't assume being in sunshine will give good vitamin D. You need to test it

vitamindtest.org.uk

Would suggest you get full Thyroid and vitamin testing after 6-8 weeks on wokhart

Personally it took many months to recover after 3 weeks on substantial reduction in dose 20 years ago (see my profile)

Would recommend DIO2 testing too. It can help in requesting T3

[McPammy in reply to SlowDragon]

Hi. Sorry but I didn’t assume my vitamin D would be ok after a sunshine holiday it actually was 96. My prof in Endocrine said that was repleat. My B12 was border line so he organised B12 loading with further injection in 3 months.

I have to reduce my thyroxine as each time I take it it literally knocks me off my feet. When I get up I can walk etc with little strength weakness. However after taking it 2 hours in i can’t hold my body up thru weakness. Even dropping the dose day hasn’t brought back the way I was before I was diagnosed with hypothyroidism 11 years ago. There is something else going on that’s broke down in my system. It maybe generalised myasthenia Gravis. That is my question on this feed if anyone out there had it combined with hypothyroidism and low cortisol.

[Marz in reply to McPammy]

If you had B12 Deficiency I am wondering if you knew that it is more than a vitamin deficiency - but a neurological one - with a result below 500. When B12 is low then Homocysteine is often raised and this can be a cause of strokes/TIA's and heart issues. Sadly rarely tested in the NHS - shocking.

b12deficiency.info/signs-an...

Scroll down in the above link to read the neurological signs and symptoms of B12 Deficiency - many of which you have mentioned.

Click onto FILMS in the menu and watch the videos illustrating just how serious B12 Deficiency is ...