How did your lupus start ?? What signs ?


I'm currently being tested for lupus amount other conditions..

I've had a real rough few

Months it's all started with restless legs then chest pains or any exertion would cause chest tightness a rash like red small dots would flare up on my chest now an again the excessive bleeding that would linger or go on for weeks giving me virtually no break. Then chronic fatigue set in sleeping for like 14 hours an being tired an lethargic all day not wanting to do anything or go any were an I have very active 4 year old twins lol so it's been tough. Then all the different muscle pain an leg cramping during day random sire elbows and knees as well as still neck. Head aches Aww lust is just growing but my liver function test come back ok but for a strange reason my doctor said he suspects lupus or similar like fibro but wants to check my hormones and done various hormones blood tests which will be back next week. I am just curious as to why he's checking hormones when liver an kidney tests were ok. I mean what is the routine tests for this o thought for lupus they did ana tests... It's doesn't make sense I'm a bit confused / concerned was wondering if anyone can shed any light on it


D x

22 Replies

  • Hi,

    I have similar, varying problems to you. Had huge amount of tests & still am, MRI's etc.

    A Neurologist diagnosed CFS/ME and Specialist agreed but said many symptoms over & above. later gp Fibromyalgia also. Discovered atrophied thyroid, micro pituitary adenoma along the way but my hormone bloods are ok.

    I still have on going testing but I am going to see a Lupus specialist as so much refers to Lupus. That said many autoimmune conditions show similar symptoms, including thyroid/hormonal & vitamin deficiency, hence Dr doing your bloods for. Phew... that's the short version! Been going on 3+ years.

    I would say follow your instinct as it's your body, a Dr can't feel or often see the issues.

    Think of your supportive gp as a medical middleman as they can only do so much, it's referral by him/her to the right specialist that important.

    Not sure if this helps, I hope so. Lots of nice peeps will reply who have diagnosis & much experience within Lupus.


  • Hi Jelly :)

    That's so helpful I'm 34 am kind of miffed thinking how is this possible... And your right here's what happened ... Went doctor with rash muscle aches head aches mouth ulcers etc... He didn't even ask me to explain. He said oh dear we have a list here so let's do blood immediately an sent me to nurses office for bloods ...that was the Monday He requested liver bone an thyroid tests so at same time I was having a 12 day bleed masking me nuseaus with weakness so I called doctor 2 days later said I really need something to stop this it's bad an I'm exhausted so doctor brought me in only my own doctor was off an had a locum in who was a woman , thank god lol so I explained an she said yes your doctor has sent for bloods analysis but I have requested further analysis of hormones ? Which made no sense to be as I had a hormone check months prior an it was fine... So I got a call yesterday an she said liver was fine thyroid was fine iron an vitamins were fine but I have referred the hormone blood on for further analysis they will be back next week so the doctor said we are checking for lupus an similar in that category but what I didn't understand was the other bloods were fine I did a bit of research an was confused as what I read was that an ana checked for lupus so why are they doing a hormone check unless ive read the wrong information I am aware something is wrong as I'm literally a fraction of my former self an have become refined to the house as I'm constantly Tired an in pain it's so deflating at times an scary ... An suppose I'm just freaking out as I'm in limbo it's the irregular periods as well has me driven mad lol I was thinking about going private for tests an analysis but I Dnt know we're to start ive never really been sick before apart from I do have pcos , thanks for the advice Jelly

    D xx

  • Hi,

    If I was you I'd request a copy of all your recent bloods from gp (make sure get results with ranges on or will make no sense) and of course get a follow up appointment to see one of the two gp's you have seen.

    The blood info/results will tell you which ones they did).

    I am curious to know which bloods they have done for Lupus if not Ana. There are many for Lupus but generally gp's just do the Ana.

    Letmeknow how you go.


  • Hi

    I had liver kidney bone thyroid and hormone tests an all ive got Of doctor is ... They have referred my hormone bloods on for further analysis ?? I have no idea what that means because I've been doing my own research trying to find out how lupus is detected in hormones bloods lol it's just ive not mich confidence in my doctor due to previous experiences sounds bad but it's true ive been ill with the same symptoms for well over 3 years which in the last 3 months have gotten to a point I'm at doctors all the time to try get him to take notice an ive decided to try get a rough guide of a price for going private for tests / diagnoses and I will contact the doctors for copy of my blood results in the morning thank you very much for that advice that will be a good start now I just need to find out who I should see lol it's all new to me so I guess it's all a real waiting game now but I so appreciate the guidance and advice I will keep you informed of the outcome


    D :)

  • Hi Prada 2015 - I was diagnosed with Lupus many years ago . I started with painful joints and in particular my knees and wrists which used to swell up so much that I couldn't walk/write or do very much. I had the traditional butterfly rash across my face and was permanently exhausted. What I didn't find out until I had blood tests etc. was that my kidney function was on the decline which lead to a successful kidney transplant in 2002. Whatever part of our body is affected by Lupus, we all seem to have chronic exhaustion, and even though my Lupus is now in remission, the symptoms still affect me.

  • Wow Katie you really have had top end of it ! Kidney transplant an all , my word!!!!!

    It's all new to me it's kinda frustrating as I'm on my own an ive twins at 4 years old so there pretty hands on an now I'm finding I'm limited to what I can do with them an that's kinda frustrating .. So to try get the best advice an directions I'm talking to the people in the "know" like yourself I think I'm going to try go private for 2nd opinion an diagnosis ive lost all faith in my own gp he's old an has no time for people with new diseases he would t be very heart felt or accomadating so i will look to change to another doctor in the surgery this week.. He shrugged it off as in its lupus I think but we do further tests an see Ya later , kind of attitude lol anyway thanks for reply like I said earlier any advice welcome on the beat avenues to take


    Donna x

  • It's a reall bummer when your GP doesn't want to listen Donna, so it may be a good idea to try and see another doctor in your practice. If you go private, then there is only one man to go and see and that is Graham Hughes, now a Professor. He's at the London Bridge Hospital and I'm sending the link below fyi.

    Graham Hughes diagnosed me with Lupus back in the day when he was an NHS rheumy at Hammersmith Hospital and I can honestly say without him, I would not be here to tell the tale! He is wonderful and its just a huge shame he moved from the NHS to a private hospital.

    Lupus treatment has come a long way since I was diagnosed, new drugs etc have led to a much brighter and better prognosis for patients. You must try and push your doctor to help you, but if not, Graham is the man to see - here's the link:-


  • Hi,'ve had a rough ride, hope improved.

    Prado, you medical circumstance sound very similar to mine. Hopefully the Specialist Lupus clinic will diagnose or eliminate Lupus, and test for other possible. 3 1/2 years and still testing stuff Garr.


  • Hi

    Jelly yeah 3 years later here to annoying or what .. Lucky I can't drink lol well technically I can but I find the hangovers an the twins like capital punishment so keep myself for special occasions , then usually end up first one home lol

    But I'm up for trying to go private so making a start tnrw with requesting blood test results an ratios tmrw first thing

    Donna x

  • When I was seriously ill after surgery, drugs and complications, I had my hormones checked and my GP said that I had a serious hormonal imbalance and this is when all my symptoms of Lupus started.

  • Cann

    Hi there I hope your well thanks for replying. Did your liver kidneys an bone stats come back ok which left it could only mean hormones ? Which then lead on to the diagnosis of Lupus?? I'm up in the air with bewilderment as to the hormones but that said ....

    I have pcos lol and the twins are actually clomid babies and suffer from terrible periods heavy to irregular to cramping all month even sore now to 2-3 week bleeds it's a torcher on its own let alone to be told I'm being tested for lupus

    So I come here to see is this the way it can come about as I can't really make head nor tail of it an in saying that I have gotten real flusstered lately lol (concentrating hurts lol)

    If you don't mind me asking what kid of imbalance was it?? I have a list as long as ur arm from nausea to dizzy spells to joints swelling aches mouth ulcers this past 3 years which have got progressively worse last 3 months even affecting my breathing at times and also a fertility problem so if it was hormones that would. E interesting an actually make so much more sense to me right now thanks for reply

    Donna x

  • It was complicated because it was after having a hysterectomy in hospital in 2000 that I didn't want or believe was necessary. I went in for a bladder and bowel prolapse repair. There were complications and I was given two courses of antibiotics that carried a caution for penicillin allergy, which I was allergic to and it was in my records. It was in fact pieces of internal dressing adhered to my insides for six weeks after the pack was removed and this caused all sorts of problems. My GP did lots of blood tests in 2001 and hormonal imbalance, thrombocytosis, anaemia, etc. all showed up, but there was no quick solution and I have basically been trying to rebalance my body ever since. I find drugs don't help me because I get symptoms of colitis, which was a side-effect of the antibiotics I was given. I have been treated with homoeopathy for hypothyroidism diagnosed from blood tests in 2009, but it can change to hyperthyroidism, so I guess it is hashimoto's thyroiditis. Homoeopathy has worked well for me, but now the CCG are refusing further funding, so I don't know what I will do yet. Drugs just make me ill and aren't helpful for my auto immune problems. I was on steroids for asthma before 2000 for six years and it wasn't asthma, but allergy to dairy products, so I eat a strict diet of no dairy or grains now, as I also have symptoms of coeliac when eating grains, e.g. the anaemia, etc.

    Since I have been on the diet, my blood test results were ok, not sure about thyroid, but don't want to keep having blood tests and my arms punctured as my body reacts badly to that, too. No anaemia, high platelets, liver panel OK. It is like a balancing act, though, I have to be very careful, but I would rather that than take drugs and get worse!

    With me, I think it was too much invasive and toxic treatment that set off all the symptoms of Lupus/autoimmune problems.

  • Hi


    After reading that I would actually agree and I am not a fan of putting poison in my body either I struggle having to take any tablets which has made me worse at times lol as I wouldn't finish the actual peracription lol but I do always try the alternative in organic or natural form of a specific medicine.... Your going to think I'm barmy but my friend who is a severe lupus sufferer an lives in Oz actually started reflexology and had seen the first ever improvement in her condition for the first time in 12 years an doing things she would never normally be able to do, it's so exciting to see she's like a new person. So I plan on investigating a good reflexologist here to. I'm now concerned it's a hormonal imbalance with me as ive always thought my hormones was up the left lol dobro speak I mean since 17 had pcos been Feelin rough tired an sore for 3 years now.

    An now I have crazy leg spasms

    Random headaches

    Iregular heaving bleeding

    Dizzy spells

    Blurry fussy vision all of a sudden last 3 months

    Mouth ulcers

    Joint pain

    Stomach cramps all the time tightness in stomach

    Low mood


    Chronic fatigue

    Sore muscle in random places

    Neck stiffness

    Chest tightness

    Back stiffness

    Joint stiffness I mean I'm like an 80 year old lol every day i just feel worse an worse in actually bored with it or complaining about it I'm hoping this hormone check shows something as the liver an vitamin etc was ok seems to be hormones there concerned about so I am really

    Eager to find out what the hell is going on if they say there clear to I'm going to cry lol I need some sort of a diagnosis than being told it may be this it may be that when this new locum doctor looked at my notes she was shocked She said I can see in front of me why we think lupus but I would like to do a full hormone count just to rule some issues, hence I was confused checking hormones for lupus lol if that makes sense.

    So any advice welcome

    I've also decided to go private so see tomorrow what doctors locally I can find ... It's all fun ... Not lol

    Donna x

  • Yes, I know what you are saying. It seems some of us are just too sensitive for drugs or perhaps the body is so unbalanced it just doesn't know what to do with them. I think when we have multiple problems it is difficult to find a single drug or strategy to help. Getting stress levels down is a start and trying reflexology or another complementary approach could help you, too, but warn the therapist to take it easy as when I first had reflexology, I had a bad reaction - probably needed it, but it knocked me out. I have had good ones since, though, because I always warn the therapist to take it easy with my body.

    Good luck and try to learn about good food, too, because that can help the hormones especially plant based nutrients and foods to help with iron because if your periods are heavy you may need to make up the blood.

    I look forward to reading how you are progressing. X

  • It's very interesting that I've read over times quite alot of people have had thyroid, Fibro, cfc/me and then diagnosed with Lupus. Guess they are autoimmune, which says something.


  • Jelly

    Just as your message come through I'm reading about a link between pcos and lupus so I'm away to put kettle on lol an get a wee insight no doubt it's a paper about a seminar between scientists in Ohio or some were random like that haa lol

    Donna x

  • Hi Prada, I saw a Rhumatologist (sorry spelling rubbish) privately as apparently your GP can not do the test for Lupus so advice is ask your GP to refer you privately it will be quicker, I went three years exhausted and I was going through menopause as well and may go through it again have just had complicated Hystorectomy. I had aches and pains was always photosensitive since teens but I have Mild Lupus and are taking Hydroxychlorquine 400mg daily but I am very lucky as it does not affect my organs as poor KatieL, keep well Katie. But I was told that it may well stem from Grandular Fever at 14 years of age I was very ill and had three penicillin injections daily (lucky to live in Australia at the time) also hepititis and Jaundice it took me a year to get back to school but missed so much left and went part time to college, I slept all the time then. So it turns out my immune system was so low and it lay dormant and the Menopause may well have triggered it. But you must be firm with your GP and get refereed either the NHS or Privately, my consultant said if I had waited to see him on the NHS I would have waited a year, no way glad I went privately (I am lucky as I have private cover) GOOD LUCK PRADA AND ALL OF YOU. NN

  • Hi Nick

    Thanks I forgot to mention about my sensitivity to light to which started last year an doctor said she would refer me further depending on these bloods coming back. But a year waiting list is nuts an just confirms my belief for going private. Take care

    Donna x

  • Hi Donna, my Lupus started although I didn't know at the time roughly 6 years ago just after the menopause started, but I have always had aches and pains my whole life and just thought it was normal (if you know nothing different you would not know it was abnormal) I was exhausted all the time and just ached mainly legs and arms but my back also. I have been photosensitive since my teens and find I wear my prescription sunglasses even when the clouds are white and sometimes on dull days but my form of Lupus is Joint and Muscule and not organs and the eyes are organs so I am not A typical, but have been informed that my organs are ok. I have had several injections in my tendons in my hips as they were so bad and one was close to tearing. (The op for that is not that successful) but since having my large Fibroid and a Hystorectomy done it has eased the pressure on the hips. I might add that if you get an infection as I have after my op they are very hard to get rid of if you have any form of lupus. Let me know if I can help further and good luck. Do go private.

  • Hi Prada2015,

    Would you like me to send you an information pack which includes more information about the diagnosis of lupus? If you would, just send me a private message or email with your name and address.

  • Hi Paul

    That would be great thanks will mail you now.


  • Hey all

    Had chat with doctor This morning

    all tests liver vitamin b etc fine hormones be back this week bone calcium test come back low an I have to repeat it in couple of weeks she said the hormones will give her a better indication of what's going as there is a whole host of issues including fertility. She's asked me to not jump the gun an start going private yet until hormones is back.. I've no idea what low calcium could indicate if all liver thyroid iron an vitamins are all ok so we shall wait on hormones then hopefully know what's going on so confusing all this lol


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