Thyroids and lupus

[Pmeh]

Does anyone suffer with low thyroid problems with lupus ? It's a new thing for me and just wanted too see if they could be linked thank you

[Spanielmadlady]

Yes I have hashimoto's thyroiditis which is autoimmune thyroid disease .if you have 1 AI illness you are more then likely to have another...I have 4 in total 🙄 x

[Pmeh in reply to Spanielmadlady]

Thank you for the reply 😊Hope I'm not being cheeky but how did they diagnose it and how long did it take ? 4 wow

[Spanielmadlady in reply to Pmeh]

I dont mind you asking at all. I was diagnosed with hashimoto's 10 years ago by the usual symptoms of tiredness,brain fog etc that goes with hypothyroidism and blood tests.i then developed b12 deficiency anaemia which is linked to hashimoto's and is also autoimmune. Then I was diagnosed with lupus / lupus nephritis and finally sjorgens which is secondary to lupus and also autoimmune.actually make that 5 ive just had a bout of scleritis which is a rare autoimmune inflammation of the 👀 linked to lupus,sjorgens ,ra and ibs. Many are linked and many overlap .please dont be afraid to ask none of us bite ....we all eaten today 🤣 xxx

[Pmeh in reply to Spanielmadlady]

Thank you 😊 this all started a year ago I was just brushed off then they gave me b12 injections but said my b12 was ok so couldnt understand when they made me have the injetions I've got most the symptoms that come with my low thyroid results do you by any chance get pins and needles in your hands and fingers/arms

[Spanielmadlady in reply to Pmeh]

Yes .I also get them in my feet ...my legs can be restless too those are b12 deficiency symptoms as well as .headaches,fatigue and stumbling .id say it depends on what bloods they did and what your levels were .b12 levels should be above 800 in the UK 200 is the treatment point mine were 202.so labwise your bloods could be in range and ok but low enough for symptoms.b12 deficiency causes nerve damage so its important to treat it .i can get mine back just before my Injection is due and they go about 3 days afterwards.my injections are every 8 weeks. X

[Pmeh in reply to Spanielmadlady]

Yeah I get the leg and feet problem too I have most the symptoms my memory is terrible for a 32 year old I didnt even ask what my number were I just had a injection every other day for 3 weeks then they said too book in every 8-10weeks but covid hit and my doctors still dont do the jabs until it's back too normal as they aren't a priority

[Spanielmadlady in reply to Pmeh]

Those are called loading doses. I've continued to have mine all though covid.b12 injections are for life .I wonder what they would say if you asked if they are prepared to be responsible for any permanent nerve damage ? There is a sublingual b12 spray which I use in the run up to my injections x

[sabine in reply to Spanielmadlady]

Ah, bless you. I also suffer with my eyes with lupus was first diagnosed with sjorgens., then lupus and also develop pink eye when run down. You have to keep going and keep things well managed. I know easier said than. Done sometimes!!

[Spanielmadlady in reply to sabine]

It certainly is .are you prescribed anything for your eyes and mouth ? I'm prescribed salivix pastels and the hospital said I should be prescribed hyloforte eyedrops for life x

[sabine in reply to Spanielmadlady]

Yes I have eye drops and have been referred to the eye hospital here in Manchester for small grit like ulcers on eyes again prescribed special drops for that.x

[Spanielmadlady in reply to sabine]

I cant get away from prednisolone no matter how hard I try ...I'm currently on prednisolone eye drops for the scleritis 🙄.I've sat for 3 weeks twiddling my thumbs as my sore eyes and headaches have made me feel like doing zero . Hope all goes well at the eye appointment xxd

[sabine in reply to Spanielmadlady]

Thank you. Take care.

[Spanielmadlady in reply to sabine]

You too keep safe and warm but most importantly of all...keep smiling 😙🤗 xx

[Pmeh in reply to Spanielmadlady]

They were giving everyone tablets but they were rubbish

[Spanielmadlady in reply to Pmeh]

The reason you get injections is because you cant absorb b12 from food through your stomach so tablets wont help.its a fob off 😡 x

[Pmeh in reply to Spanielmadlady]

I know they received lots of complaints but they said the tablets are the same they definitely are not alot of the surgery's here have re started and are doing them outside in a cubicle but mind wont they dont want anyone in it takes seconds too do

[Spanielmadlady in reply to Pmeh]

I'd put in an official complaint. B12 is listed by WHO as an essential medicine.i go into the surgery for mine by appointment in ppe.Have you had a look on pernicious anaemia society site.?

I dont know what else to suggest X

[CecilyParsley in reply to Pmeh]

I self inject B12 monthly. My symptoms were severe and my GP refused to prescribe the injections any more than once every three months. The pins and needles in my hands, feet and thighs, memory problems, numbness are much improved now.I also take 110 mcg Levothyroxine for Underactive thyroid. My thyroid function has worsened over the years and my medication is increased. I also prior to lockdown had Hyperparathyroidism queried as my calcium levels are either very high or very low. I hope you get appropriate medication to ease your symptoms and help you feel better. Good luck xx

[Pmeh in reply to CecilyParsley]

Thank you cecily I hope so too it be great if the Receptionists didn't think they were doctors as they asked be to do a test in 6 months for them being low to then be told it had too be 4 weeks 🤦🏻‍♀️

[CecilyParsley in reply to Pmeh]

Yes I know what you mean my Neurologist wrote to my surgery at the beginning of February to suggest a course of treatment as he wanted to see how I got on with it in two months. Despite his letter and my putting it in writing twice I still have not had it and the receptionists in their best blocking tactics will not let me speak to the GP about it. Shocking really xx

[Josiah150767]

HiI have under active thyroid due to lupus. Sjogrens as well.

[Dcruz]

Hello,Yes I have Lupus SLE , Sjogrens and had my left thyroid removed due to cancer after a lump was found on my voice box. I also have bile malabsorption too which I think are all related to Lupus. The gift that just keeps on giving ! 🤦🏻‍♀️

[miccika1]

I also have low thyroid levels for which i rake supplementation

[Pmeh in reply to miccika1]

Do you also take Levothyroxine

[miccika1 in reply to Pmeh]

Yes plus a little bit of liotyronine that helps a bit with cognition.

[Beautifulwoman]

Hashimotos and SLE. Hashimotos is under control with Levothyroxine. Both illnesses do have similar symptoms though. I do think I still feel ill effects of Hashimotos at times even though my numbers are all within good range. Unfortunately, autoimmune diseases usually come in pairs or more. So not uncommon to have a thyroid issue with lupus.

[Pmeh in reply to Beautifulwoman]

Yeah I was suprised at how similar they are so cant tell which ones playing up I've never been cold but my hands and feet are freezing I've just had more bloods 2nd ones hopefully they will give me something for the low thyroid then

[Willow7733]

I have had Hashimoto’s thyroiditis (leading to hypothyroidism) for several years now. Around 21 years ago. Just recently diagnosed with lupus.

[MrsMarigold]

Hello Pmeh. Yes. I’ve had Hashimotos Since I was 17. I’m 63 now and of course

No one knew really what to call it. So

I suffered while medicine wanted to

Give me antidepressants. I do believe

I’ve read that untreated Hashimotos leads

To Lupus and other autoimmune diseases

Because all those antibodies are having

A party in your thyroid and then they decide why not party in another body system? So please take care of your thyroid. You will find that SLE and Hashimotos are so alike it will be difficult

Many days to know which one hurts you

The most. My lupus is controlled well

With HCQ and low dose prednisone. But

The fatigue just never goes away. Best

Regards, titters

[Pmeh in reply to MrsMarigold]

Hi titters thank you for the reply my bloods have come back and the doctor needs too speak about the two so cant be good 🤦🏻‍♀️ that's what I was thinking the symptoms are so similar I dont know which one it Is I was on hydroxychloroquine for years but i had a reaction randomly so I'm on nothing until I see my consultant which the emergency list I'm on is 56 weeks I think I've got about 8 left 🤞🏼 soo frustrating

[MrsMarigold in reply to Pmeh]

I’m so sorry for the long wait. I’m in theUSA and our system is different. We don’t wait that long for appointments. Can they not do telemed with you? Since Covid most of my practitioners still prefer it. And usually it’s with 2 days

( well, I’m considered a real sick person

With Lupus)🤷‍♀️😀