Sticky Blood-Hughes Syndrome Support
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I feel so lathargic & unwell I can hardly stand

My referal to Dr McHugh in Bath has finally been forwarded......I am feeling very unwell & desperate for help. I hope i dont have to wait long for an appointment.

My voice has gone to a mere croak my mouth & eyes are very dry.

The lethargy is so cronic i am dragging my limbs around.

Memory & concentration has gone, got to use my spell checker due to not being able to spell the simplest of words.

I have had tingling down the right side of my face for a few days ,now, my lips & nose feel very numb but ears are burning.

My legs & feet feel numb but i have a burning sensation in my legs.

This is awfull just got to lie down. Jill

20 Replies

u organtly need some t.l.c., hope u dont have to wait to long to see dr mchugh.xx


Hi Stacey,

I have just woken up ! It was one of those where if i didn't lay down I was going to fall down.

I went out like a light but cant say i feel any better for it, but then i never awake feeling refreshed.

Something I wonted to ask you was when your feeling really unwell was if your voice

changes ? Wish you could hear me I sound like minnie mouse at the moment.

Think it will take a little more than TLC Stacey, but a little would be nice.

You just feel so out of it when your like this. Talk about spaced out i dont think i could feel any worse if i was off my head on wacky backy or drink.

I hope this appointment isn't going to be to long a wait as i am really desperate now.

Dr Mchugh is suposed to be very good on auto-immune conditions so lets hope he can shed some light on what is going on with me.

It's about time somebody shed some light I have had years of this, it is definitely getting worse.

I think i have gone dislexic Stac i cant think how to spell simple words at the moment.

Thank heavens for my spell checker, it has taken me ages to type this my fingers feel strange & got legs like jelly.

Another day tomorrow let's see what that brings.

Take care Jillymo x


Hi jill dont worry about the spelling. Im rubish at it. I wrote a long blog to u .Its on the internets failt. Blog. . And one in ur inbox. Iv been busy!! Hope u geta proper rest. X


Have u been at the hellam bullons again jill!!??? Yes thinking bk my voice has gone like im sucking on hillam bollons. But not often. . Sorry if my humor afends u.


I really feel for you Gill.

Your symptoms are similar to my own. My voice often makes me sound like a donkey on helium!

Regarding the spelling, I used to be a good speller but all of a sudden I was having to look up simple words. This has improved since I have been on clexane but still bothers me a bit.

Lets hope you get your appointment through soon, it is worth ringing and putting your name down for a cancellation.



Hi Sue,

May be we can all be standins for the muppets voices. MY voice always goes when i am at my lowest, is yours rthe same ?

I feel like i am away with the fairies i'm unable to concentrate on anything.

I will do that Sue i might be lucky and get a cancellation, I do feel i am in need of some sort of help, I really cant carry on like this much longer.

At least the sun is out today ! Take care. Jillymo x


Oh Stacey i am glad I am not alone, I am more like Kermit the frog this morn.

I shall leave the helium to you i,m sticking with wacky backy :) Still feeling out of it this morn.

I slept on and off but woke in the night with tooth ache, I think it might have been nerve pain because it has gone now !

You say your busy dont over do it and make your self bad.

It's nice to wake up to a bit of humour , i have nothing else to laugh about at the moment.

Still feeling shaky and off balance. :(

Take it steady. Jillymo x



Hi there alongside investigations for Hughes, please make sure you thoroughly investigate your thyroid, this disease often comes as a trio with Sjogrens and also Thyroid issues, sometimes people are told it is 'fibro' as quite often the tests for Thyroid do not show up what is really there straight away. An untreated problem for hypo thyroidisim gives a very long list of symptoms, some of which would overlap, quite obviously.

Mary F x


Hi Mary,

I was sorry to hear about your son and the foot problem, I hope he is making progress.

I had an over active thyroid to start with Mary but it is now under active so now on thyroxine.

But with treatment i was still 'very' unwell, i was told it was all in my head.

I was so unwell I thought I had MS so after many years of suffering i stuck my neck out and asked for a lumbar punch or a brain scan.

I refused to leave the consulting room until they did as i asked.

I was given a brain scan this showed lesions in the grey matter ! Due to this result my huge file of notes were called for, they discovered something that had been found in 1976 in your name sake at St Marys !!!!!

I had HYPOPARATHYROIDISM, I went from a all in my head case to a very interesting lady.

'What a surprise', they were so excited due to it being rather rare, mine is genetic.....sadly my son has the same.

I was cross Mary, one consultant had labelled me a waste of time and money so i took him to tribunal and one my case. :) ( I CALLED MY NOTES )

As excited as my local hospital was I refused to have any further treatment from the clinic i am now treated in Oxford.......also awaiting further appointments to see a Rheumy in Bath not sure if it is Dr or Prof but it is McHugh David is seeing him and informs he is very good.

I really am feeling awfull, the sooner i see him the better. Jillymo x


Often the treatment is not adequate, do also join Thyroid UK on this same HU platform for help with this, many of their members are on here and vice versa! MaryF x


I contacted Thyroid Uk in ignorance when first diagnosed with parathyroid problems thinking the the parathyroids where the same as the thyroid.

They were of great help & published my story in there magazine.

Through them writing my story it was read by another with Hypoparathyroidism, this lady was of great help to me.

Take care

Jillymo x


Good they have so many members inadequately medicated, or who do better on the natural preparations, and your bad health currently plus the Hughes Syndrome makes sense. All the best. Mary F x


I'm delighted you have an appt coming up. Not that it will physically help--but know that positive vibes are headed you way from across the pond.

My voice, ( I sing in a church choir,) has an annoying habit of going up to 1 st soprano range, then down to 2 nd or even alto. The changes are gradual, over several months, but fluctuate. First down then, then down again ( which I expected with age,) then up and now up again with menopause and cessation of HRT. I suspect fluctuating estrogen levels. Estrogen is in the inflammatory family, so yeah, IMHO there bould logically be a connection between inflammation and voice changes.



Hello Gina it is nice to hear from you, how lovely for you to be able to sing in a choir.

David one of the Admins on here also sings in a church choir, how i would love to hear the pair of you sing.

This thing with the voice is very strange, I wouldn't say my voice goes up & down in pitch I would say more weak & i am not a singer.....croak :-)

I do have inflammation showing up inn my blood your theory could be right.

Hope your keeping well Gina. Jillmo x Ps. Four copies of your mail came through !.


I used to have a strong voice and sung in a band but now it is weak and I need a mic close to sound any good. Has there been a poll on the subject of the voice being affected by Hughes?

I have also lost most of my eyebrows which I thought was a sign of hypothyroidism but my GPs seem more amused by my condition and say my thyroid levels were in range.

It took me 20 years and a heart attack to get a blood test which was positive for anticardiolipin. Being a man with a women only disease (that appears to be their attitude)

I never get taken seriously. One woman doctor said I could not have the symptoms I described because only women get that!


Hi sporty,

I am not sure if a poll has been done with regard to the weak voice......I have spoken to a few people on here now who have the same problem.

I have not been diagnosed with hughs but do have thyroid issues, over active to start with now under active & on thyroxine.

It took many years for me to get a diagnosis due to my levels being boarderline for many was a trip to St-Marys & a shot of radio active iodine that gave the results.

Even when I was boarderline I was showing all the symptoms, I had the heart beat in the neck that drove me mad at night.......mood loss.....weight loss.

Loss of the eyebrows is common, what a shame you have a weak voice when you love to sing.

So have you got thyroid problems or has that been pushed aside ? they ought to keep an eye on you.

At least now your on this site you know there are men on here with the same as yourself so your not alone.

Male or female it is a battle to get a diagnosis.....I could do with the wieght loss thing back as it is now galloping on & I cant shift it.

Nice to hear from you. Jillymo. :-)


Losing outer eyebrows is a sign of hypothyroid and having "normal" TSH is no indicator of actually not having a thyroid problems. The usual issue of treating blood tests rather than the symptoms!! I would seriously consider changing your GP if you are not being taken seriously but you need to have that thyroid checked out again.


The problem is finding a decent doctor.

Most I have met rely on unreliable tests as if they were the holy grail of diagnosis.

They all seem to come from the same mould.

If Health unlocked could start a clinic for auto immune diseases I would go there providing the docs were "Progressive" for want of a better word.

Doctors should also be rated with a feedback system like sellers on Ebay or Amazon.

Patients and family could then root out all the poor Docs

I was checking out a web site used by doctors and even they admitted they rarely get it right more than 3 in 10 cases.

Misdiagnosis is as dangerous if not more so than not going to the doctor.

I lost a good friend who was misdignosed and could not be cured by the time they were correctly diagnosed.

They would have been safer not going to the doctor and self diagnosing on the internet.


"Misdiagnosis is as dangerous if not more so than not going to the doctor".

Very, very true. My own Mother was misdiagnosed and a few months later when she was admitted as an emergency after collapsing they found a huge tumour which had already metastasised. She was 57 when she died a few months later.


Misdiagnosis is lethal. Your poor mother lost her life & at no age but was anybody reprimanded I dout it, what a sad loss of a young mum.

I have said to my consultant " what are you waiting for me to have a stroke or a heart attack

before you take action" I couldn't have screamed for helpany more loudly than i had.

I have photo's of myself looking very unwell complete with the livido rash....a long history of autoimune desease.......& still i slip the net.

I have known my consultant for years yet he has sat back & watched me go rapidly down hill.

What we need is a tv programme to high light all these issues.

Sorry to hear about your meds the other day that made my blood boil. jillymo x


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