Possible Auto Immune?

Allergies, blood and immune system
1

Hi I am a 26 year old female, slightly low BMI (typical as tall skinnyness runs in the family) and I have been having paticular symtoms for 2 years now. 

It started with night sweats, I am generally a cold person, waking up soaking wet with sweat, I am incredibly tired all the time, and get very aggressive (Apparently) when woken up, along with this I suffer with palpitations, high anxiety levels, Bruising ridiculously easily, constant cold hands and feet, aching joints, my ankles crack to the point where sometimes it aches so bad I cannot bear weight until it cracks, hips pop out sometimes, bad mouth ulcers, breathlessness, occasional chest pains (cant breath in all the way until it subsides) and had one out burst of what looked like eczema on the palms of my hands - was blistering and bleeding for around a month. 

I started having blood tests last year at my old doctor, they said it was anxiety - I do suffer with this but I don't have anything on my mind that would make me ill to this extent, they made me have blood tests and said I had high blood pressure too, which i was given beta blockers and sedatives (I never took the sedatives as I don't think i need them? sleeping isnt the issue) my blood tests came back with a really low white blood cell count, these tests were repeated for a year and I didn't get anywhere, when the rash on my hands started and I was told to basically just put up with it I changed doctors. having never suffered with it before I know in myself it wasn't normal nor an allergic reaction as nothing had changed. 

At my new doctors I have undergone a 24 hour heart monitor - this came back ok I think I am back in 2 months for the results (I dont get palpitations all the time so I wasn't worried) and the bloods I had done when I changed he said came back ok but my B12 and Vitamin D levels were far too low and I am on high doses of these. 

I also had a medical at work and they made me ring a nurse straight away as my kidney function was quite bad, I did another at the doctors and they said this was ok (over the phone - haven't seen him yet) But my period was 2 weeks late and have since been spotting (I have never suffered with this before either? I could even tell you to the date and time I have always been that regular previously) 

So I am currently waiting to see him again - but I joined here to see what people thought as I am worried this doctor will do the same. 

I am worried as because its a collection of symptoms that I seem to have got used to and sort of got used to putting up with them even though i know its not normal at 26 to feel like this when I eat pretty well and I exercise regularly. I feel like it must be something auto-immune as I have heard of similar symptoms but I don't know what to say to the doctor? 

I just want to feel normal! Any advice would be really great Sad Help please !

2

Hi, it's hard to tell, but you do need to get to the bottom of it! I have lupus, it was diagnosed by blood tests. I thought I had arthritis as the joint pain was so bad. I was 33 then ( now 50) lupus has so many factors and runs in families as it does mine but your blood tests should tell if that's what it is. Ask your gp to test for this. I hope you find out soon. Rest often it helps me when I am sore to do this...but keep pressing your GP for answers. Once you know you can be treated. It doesn't remove lupus but helps you manage it. The key is to pace yourself. I overdid it many times so I learnt the hard way....take care xxx

 

3

Hello,

I presume the tests also included Thyroid function and Liver Function tests? The night sweats and palpitations and your general 'thinness' would suggest overactive thyroid, but the other symptoms point to at least something in the autoimmune bracket. Lupus is certainly a possibility as it can affect pretty much any part or system or organ in the body and in a myriad of ways!

I was given some excellent advice by a member of this forum prior to seeing a Rheumatologist which certainly proved to be useful, it is this: Make a comprehensive list of your medical history, your wide and varying symptoms - no matter how seemingly insignificant - and as far as possible a detailed family history - especially important as many autoimmune diseases run in families, so anything like Psoriasis, Reynauds, MS, Diabetes, Rheumatoid Arthritis, Scleroderma, Thyroid disease, Vasculitis and so on.

There are some excellent websites which can explain the various necessary tests to exclude or include a diagnosis of Lupus or any of the other possible suspects, for example: Labtestsonline, the US version is actually much more informative, and of course this one!

When you see the doctor go through your lists systematically and explain in as much detail as you can just how awful you have been feeling. Ask for a detailed explanation of the tests you've had done so far. And ask for for those which you think may not have been done so far.

Best of luck.

4

Yes I have had all of these tests. I went again on Friday, the doctor didnt look at my list and said he tested me for Lupus last year and its not lupus - I walked out i was so upset. Surely its not normal to feel exhausted/dunk/forgetfull and in constant agony without high dose vitamin D and B12 - he cant even tell me why i need them. Thinking of going private - i feel like they think i am lying and a hyperchondriac 

5

I thought I was the World's most accomplished hypochondriac!!

Fortunately, I had a good GP (now retired, luckily her replacement is equally as good!), who really listened. I also have a good Rheumatologist who spotted signs I was completely unaware of, hence the diagnosis of UCTD, his associate, the Specialist Nurse is good too, so I am lucky. I really feel for folks in your predicament who feel let down by the NHS or their GPs when they know deep down that there is something wrong but those who can and should help them just don't listen. 

In all the research I did (I'm a qualified nurse and am therefore familiar with the terminology, and with Lupus) I discovered that many patients with negative test results are often still diagnosed with Lupus by a specialist, this diagnosis being predicated on their signs and symptoms. A large number have a diagnosis despite not having the classic signs such as: the butterfly rash or positive Lupus specific antibodies. With this in mind I would go back to your GP and insist on a referral to a Rheumatologist. They are the specialists for a reason! GPs can't always make the distinction between hypochondria and genuine illness such as Lupus as they don't have the necessary specialist training in the many and varied Autoimmune diseases. They see a myriad of conditions every day whereas a specialist focusses on one (or a related group). Be firm and if you still don't get anywhere change GP.

Incidentally there is a body or research which links low Vitamin D levels with not just Lupus but with other immune systems issues, mine was also low in addition to other deranged blood results. Persevere and I wish you the very best of luck!

Best wishes.

6

Right - a long time since I replied but here goes.

I have since gone Private, after the night sweats have increased, I get temperatures from month to month as high as 39, and can never get in at my doctors when I am at my worst.

I managed to 3 weeks ago, and the eyrithrimicin he prescribed me made me so sick I ended up in hospital on a drip.

I saw my GP as soon as I came out of hospital and asked for a private referral, he said a rheumatologist would be best and I am awaiting an extensive list of blood tests.

The main issue I am concerned with now is I have had this for 4 years, my symptoms "flare up" and i know if I have these bloods done tomorrow I feel ok at the minute so they won't be as bad as they previously have been, but when I have managed to get into my GP and have tests, and my ESR levels are high and kidney function is poor etc they just say it's a "viral infection" despite me telling them this happens on a monthly basis and it is getting worse.

I'm hoping the specialist I am seeing will recognise my genuine frustration with feeling 102 at 26 years old and help me finding something to help me. Especially since I'm pretty sure my hair is thinning in areas too now.

I guess I am just worried that the specialist will see my bloods and say it's a viral infection like all the others and I will be stuck feeling like no one believes how crappy I feel...?

7

Hi,

Sorry to hear that you are still suffering. On the plus side you will soon be seeing a specialist. I had a great piece of advice from one forum member and that is: make as full a list of ALL your symptoms (no matter how vague) and all your medical history. Include as much family history as you can. Also, ask your GP for a printout of your blood test results for the last 4 or 5 years, from the printout the specialist will be able to see a pattern. Also, don't make the mistake of explaining away anything with statements such as 'I put it down to my age/menopause' - that's what I did with regard to hair loss and I still don't have a confirmed diagnosis!!

On the plus side with my situation I now have some new and exciting symptoms - a new and symmetrical red and intensely itchy rash on my lower legs, plus the itchy saucer sized swellings I have had on various parts of my body. My GP is going to refer me to a Dermatologist, I am hoping some biopsies will be done. 

Have you looked at the St. Thomas' site? There is a section which deals with the alternative criteria for Lupus, very informative!

Good luck with the specialist.

8

I have lupus but my daughter tested negative about 4 years ago and has all the symptoms she finally went to see another Doctor and was told she had full blown lupus. I had talked to my rheumatologist regarding her problem before and told her she had a positive ANA but told that she didn't have lupus and I was told that she needs to have 12 symptoms of lupus to be diagnosed with Lupus. Samething with my youngest she's 21 and she just got a positive ANA but she has a few joint pains here and there but nothing to call lupus. She actually did a collage page on lupus and she also verified the 12 symptoms. I also had anxiety and night sweats at your age and it was my hormones and then they found out I had a large cl cyst

9

Sorry that got sent by mistake! A large cyst on my left ovary and was first put of hormones to see if it would shine it and finally I had to get it removed along with my ovary.

10

Had £1400 of blood tests done privately through my rheumatologist.

I've noticed I do have red skin in the butterfly area but because I have always had this red skin in this area? I also was reminded that when I go on holiday I get covered in a rash all over my legs, shoulders and feet? (Again never thought of this because I got told it was prickly heat?) my nails also have started growing in weird ridges so I will mention these on return to see the doctor. Really hope something is done soon, I think I will break down if I don't get answers for my symptoms. I've also read that you can have lupus but it not show up on bloods, how true is this?

11

Hi,

In all the research I have done, as a nurse and sufferer of autoimmune disease, I have found that there is so much inconsistency in obtaining a diagnosis! The criteria lists 11 - 14 symptom sets and clinical findings only 4 or 5 of which are required for a confirmed diagnosis (2 MUST be clinical findings i.e. positive blood test for ENA and raised ESR for example). HOWEVER, many specialists seem to think that you must have all of the criteria!! Some patients get a diagnosis of Lupus based on their history/desrciption of symptoms and a few of the alternative criteria with absolutely no positive blood test results or any of the clinical findings!???!

In my humble opinion it all seems so arbitrary. Also, as I mentioned, I forgot about the hair coming out in great fistfuls every day and when asked I said I thought that had been due to menopause. So please don't be tempted to explain away any of your symptoms with comments like 'I thought it was hormonal' because you may cloud the specialist's judgement and ultimately get nowhere!

As to having Lupus without it showing up in blood tests........this is in the area of mixed opinion. Yes, some people have the symptoms such as rash, joint pain etc but if the disease is not active at the time blood is taken then results may well be negative. ANAs will always be present if you have them but they can increase just before and during a flare. The ENAs (specific antibodies linked with the various autoimmune diseases) they might not show up for years or at all!

As with anything in medicine it is guesswork based on experience and opinion, along with patient history and clues (symptoms) and results of tests. In all my 30 years of working as a trained nurse I have seen many patients have negative blood tests and investigations/surgeries with nothing found only for them to eventually be diagnosed with the condition for which they had the tests/investigations/surgeries in the first place. It pays to seek a second and even third opinion. Also, the medical profession does not like to be told by untrained laypeople that they are wrong! They don't like to be told what that something is or the hear what the treatment should be. Nor do they like to be humiliated by laypeople. I say poppycock! Admit to the patient you got it wrong and damn well treat them!!

So my advice to everyone out there with any inkling that they are ill is to persevere, research, persevere and persevere some more!!

12

Did you end up getting no diagnosis? Hope you got some answers.

13

I haven't been back to find about the results, I'm going this week. Since last time I posted the rash has got worse, I've been in hospital twice and riddled with ulcers and a swollen neck since August. I've finally found some antibiotics I'm not allergic too so I will go back and see, the doctor said he wanted some repeating and a possible MRI scan. I'm loosing hope of ever feeling well again, I'm only 27, I feel about 90. It's literally ruining my life and my mood

14

I saw the specialist I showed him images he said I have fibromyalgia even though I have no constant pain, I've been labelled with the NHS version of a hypochondriac sticker

15

Hi,

When I first saw the Locum Rheumatologist (who was great by the way) he asked me for my opinion on Fibromyalgia, I had to say I was on the fence as to whether it was a real condition or not. I don't have pain across my back or neck and shoulders all the time either, but the cold or a heavy physical workload do bring the pain on in bucketloads.

I have, since my visits to Rheumatology, read a great deal of research into many aspects of the conditions which fall under their umbrella and Fibromyalgia was one of them. The Locum told me that there had been research which shows that Fibro sufferers have a higher level of a neurotransmitter (or receptor, can't recall which!!) in their Cerebrospinal fluid and that other research shows that the nerve fibres in the areas of pain respond differently from those without the condition, which means that they either receive a normal signal from the brain and respond over-enthusiastically resulting in severe pain or the brain receives the normal signal and sends the message to the muscles that they are on fire with extreme pain.

The consensus is that it is real, can be identified by clinical and lab test findings and that many Rheumatologists are now actively ruling it out or in as a differential diagnosis when seeing their patients.

You are not being dismissed by the NHS at all! Ask to be assessed by the Pain Specialist team to get some more appropriate medication. As to your other symptoms, keep on at your GP or the Specialist to have further tests.

Best wishes