I have just been diagnosed with these things. Are they thyroid related. I am bedbound and can’t stand up or walk. I have not eaten properly since 2013. A physio came yesterday and said my core muscles have gone. She is getting an urgent occupational therapist
This thyroid is killing me.
hi there , adding a link to one of your previous posts , so people can see what your previous thyroid results were etc . healthunlocked.com/thyroidu...
sorry to hear you are struggling so badly .
presumably you never managed to get GP to agree to try an increase the dose, so you're still only taking 25mcg ?
The doctors all want me not to take any. I tried to come down from 50mcg to 25 but all the symptoms came back really badly. I have had a blood test and the doctor wants to talk to me so it will be the same thing, I am taking 50 but the doctor will want me off them. She is ringing on 7th January. I had covid Pneumonitis last January. And hospitalised and have never recovered from that. I am so depressed and will miss Christmas with my family. My husband. Is at his wits end and so are my children and I feel a terrible burden I have autism and adhd which make everything so devastatingly difficult thanks for replying
if your husband .. or your children , were this ill , would you say they were a burden ?
... no you wouldn't .... you'd wish for them to feel better cos you love them ..right ? yes it's hard for them too , i get it , but you are not a burden... you are their loving mum and wife, and none of this is your fault.
if it helps at all ... i can walk and do all sorts you can't , but i can't be bothered to do christmas at all cos i'm an antisocial so and so who get's extremely lazy in winter, and my family still love me just the same .
Sending you a hug across the interweb.
Thank you for your kind words. A hug 🤗 back to you too.
Have you ever been referred/ tested for Long Covid?
I have had Long Covid for 4 years 9 months, never been tested for it, though been diagnosed…mine it like a diagnosis of exclusion ie chest X-rays, ecgs, echocardiogram etc nothing seen but still got high BP/HR, no sense of smell etc…only ‘diagnosis’ postural hypotension. Has meant got first referral to NHS endo.in over 20 years, who despite high HR was quite happy with dose 100 levo./ 15 T3. But LC means worse fibromyalgia, vertigo, chronic fatigue etc etc.. if you try going down LC route be prepared for lots of tests, but not necessarily being seen by dr!
I have got no sense of smell and vertigo and fibromyalgia and bedbound. I am a long way behind you. I had COVID on 2nd January this year.
It is interesting that you should say that because I have got a lot of the symptoms of Long COVID. I have never felt the same.
Its certainly something to consider. You say you very very unwell with covid pneumonitis and have never recovered. There are specialist covid clinics that were set up after the pandemic to diagnose and treat post covid complications. I would certainly want to rule that out. Long Covid is very similar to ME/ chronic fatigue syndrome. Please ask your GP to refer you.
Curious to know where you live..only LC ‘clinic’ set up within 2 hours of me ( didn’t look further) are useless breathing ones run by physios…. .?
There's a list of NHS England ones here. How good they are is another matter.
england.nhs.uk/coronavirus/...
Thank you for that list. It is kind of you.
I live in Kent. Do you have long covid and do you have mobility problems
As in mobility problems travelling in car etc , or walking? Difficult walking as I have postural hypotension and have to sit, even lie ,down after a few mins.else I pass out! I live in far NW England, so often go to Newcastle/Gateshead area for health but 1.5-2 hours away.
I am sorry that you are so unwell. I have never felt so unwell. Am constantly dizzy when I sit up and like you feel like I will pass out. It sounds like the same. Have you been diagnosed with long covid?
Yes , had 3 lots of covid and 3 jabs, and got LC ‘diagnosed’ as in Drs.include it in their letters…it was the tilt table test that showed I really was ill with postural hypotension as pre syncope/ syncope had not registered with the GP, and even when it did sink in he then became convinced it was from being ‘overmedicated on Levothyroxine’! Have you had a TTT test…if you look up the charity website ‘PoTS Uk’ they have a map of clinics dealing with dysautonomia…. very out of date , but it’s a start to ring around to check who could test you, and get a referral to. Not that the diagnosis then gets successful treatment! My favourite website for info/ guidance is run by a London cardiologist see ‘Stopfainting.com’.
What is ME/chronic fatigue syndrome symptoms. I don’t know about them.
LC has left many sufferers with symptoms of ME/ chronic fatigue ie excessive exhaustion not cured by sleep. I had fibromyalgia before I got LC so it’s just a layer ontop!
I have fibromyalgia as well. Had it for decades. It sounds like I also have ME/chronic Fatigue. I don’t sleep well and when I wake up I feel exhausted and don’t feel like I have been to bed. I have not had a TTT test test as Long covid hasn’t been considered only now I am thinking because I am bedbound and so sick. A physio made me take my blood pressure but I did the sittinup then standing then I was supposed to stand for a few minutes but i didn’t hear that part was he was hard to understand with his foreign accent. The only time I am not faint diary feeling sick is laying down. It sounds like POTS.Thank you for the information about it all and the places. I have never felt faint in my lifer now I feel like it all the time.
Sorry missed this bit in PM…my favourite dysautonomia/POTS/ postural hypotension webpages are by London cardio, Boon Lim, very up to date, ‘Stopfainting.com’…a good place to start. While POTS Uk website has a map showing clinics with tilt table testing etc…very out of date but a good place to start to find your nearest by phoning them up to see if they accept referrals.
Thanks for that information. Much appreciated.
Long covid affects more women than men and if you already have an autoimmune disease aka autoimmune hypothyroid disease, it can increase your risk. Women are more prone to autoimmune diseases anyway. And they think long covid is a disregulation of the body's immune system.
Thank you for that information. Does long COVID give you mobility problems because at the moment I can’t stand or walk and keep falling over.My hypothyroidism has not been treated properly. They don’t want me on any levythyroxine and was on 25mcg for months.i asked them to put it up to 50 but the doctor says it is sub clinical and I shout come off it. I tried to reduce twice and it nearly killed me.
It has certainly been reported that LC has caused mobility issues and some have ended up needing mobility aids or wheelchairs. Additionally being bedbound causes you to lose muscle mass and bone strength meaning you are in a vicious circle.
I dont doubt your hypo isnt helping either and 25mcg is a child's dose of Levothyroxine, not enough to do anything useful. But I suspect your covid complications might be the main issue. And they need addressing.
Thank you for replying, I have just started using a wheelchair. My thyroid would not do this especially as the doctors are horrible said it wasn’t too bad I didn’t reralise how bad long covid can be and you are right about the muscles and bones.i am stuck in a vicious circle.
I do have a wheelchair and folding camping stool that stay in the car in case needed when feel like I will or have collapsed…. For me it’s a LC not a thyroid problem, but well before I was diagnosed 20 odd years ago I did have strange symptoms ( including seizures) that were put down to ‘trapped nerves’ as epilepsy and brain tumour ruled out…. I do wonder whether there was a thyroid component….
50mcg is a starter dose. What are they thinking?
I just read the thread and was confused by the different usernames being the same person!?
just PMed you as LC getting rather off thyroid topic!
gallstones
Fatty Liver 
Gallstones
Gallstones
Fatty!!
