Advise on possible autoimmune conditions please :)

[louisaj15]

Hello, I have been back and forth to my doctors since the end of last year with various symptoms. But I am having a real issue in getting any form of diagnosis, treatments or referrals. I really wanted to know how people here were diagnosed with lupus or other autoimmune conditions and if you have any advise?

I am 27 years old, and have been back and forth to the doctors since I was 14 due to iron deficiency anaemia. It is something that I haven't unfortunately been able to resolve. They give me 3 tablets a day to take for 6 months, my iron levels seem to rise and then within 6 months I am back again feeling lousy. I don't have a poor diet and I am also on the pill (so my anaemia isn't due to periods), I genuinely believe there is another cause of it or that there is an issue with how my body absorbs iron. At the end of last year I noticed that I kept having underarm pains, I then felt painful lumps under both arms. I went to the doctors as soon as possible and I was told it was probably just a reactive node. My lymph nodes under my arms have been going up and down on a weekly basis since then and they cannot tell me why. I don't have an infection, and they have done an ultrasound and confirmed it is my nodes that are swelling. i have had numerous blood tests that all confirm my iron levels are low, my ferritin levels are also low. They said my inflammatory markers are up, but obviously this doesn't point as to what is inflamed. They also tested CRP, ESR, FBC, thyroid function (I do currently take levothyroxin, but my levels are ok at the moment), liver and bone profiles and various other things that I cannot remember. After the results the doctor advised he would refer me to a haematologist, this didn't happen for a reason I am not sure of and another doctor advised he would refer me to a rheumatologist as he thinks this would be more beneficial. It has been a few months and i am still waiting for an appointment as there is a backlog where i live. Meanwhile i am at my wits end with all my various symptoms that seem to be increasing. I feel like i am going insane and that the doctors don't really believe me or take me seriously, or that there is something horribly wrong with me that is not being diagnosed.

My symptoms so far have been;

Swollen nodes under both arms (these go up and down and are not constant)

Swollen node at the back of the neck (this has been constant since i noticed it in January. I have seen a doctor regarding this who has said it isn't anything to worry about)

I have had 3 ear/throat infections within the last 7 months.

My hair is thinning and becoming brittle, i also have blister/pimple like lumps along my hair line that itch and form scabs.

I am covered in bruises, the last count was 43.

I get rashes constantly, they don't usually last long at all, even just a few hours, they are usually flat and have no texture, not itchy and appear most commonly on my face, neck, chest, breast and legs.

Itching - particularly on my face, neck and thighs.

Aches - predominantly in my hips, knees and toes.

Pins and needles in hands

Fatigue - i have always had this because of my anaemia but i really feel that it has increased over the last 6 months. I feel that i am constantly asleep and i never feel any better for sleeping.

I should also add that I have been to the doctors again today and they have sent me for another blood test. Iron, ESR, FBC and Coag were all ticked on the list. He added ferritin and blood film testing on there and he did write 'SLE?' as a reason for the test. I am so sorry for the essay, but i just have no idea what to do now and i feel so stressed and anxious. I am not looking for anyone to diagnose me, I would just love to hear peoples diagnosis stories, and any advise.

[Roarah]

Has lymphoma been ruled out? you should push for a hematology appointment along with still seeing the rheumatologist. Good luck.

[louisaj15 in reply to Roarah]

Hi there. I have been to see an ENT about the node on my neck, I have not had any scans or tests on the node itself. He said it felt very small, moveable and said that even if it was there in a years time he wouldn't be concerned. So not exactly helpful. I have also had ultrasounds on my underarms twice, once they couldn't see anything, the second time they found the swollen nodes but said as they swell up and down they wouldn't refer me further for this. I will ask the doctor about this when i see them for my test results, thank you.

[Roarah in reply to louisaj15]

It does seem as if they have ruled out lymphoma. Anemia and itchy rash are frequently seen in lymphoma but with your nodes often disappearing and having two doctors and ultrasound results not worrisome to the experts I think you are safe to say it has been ruled out.

Regardless, relapsing anemia is a blood issue even if caused by an autoimmune syndrome so a hemotologist is a doctor you should add to your team. Many of your symptoms can be linked to the anemia and/or a low wbc as well.

I have an autoimmune disease that attacks my blood function and it is my hemotologist I see to control the blood related issues and symptoms. I see the hemotologist every three months but only see my rheumatologists once or twice per year. Do see the rheumatologist but also push to add a hemotologist too. Xo

[KayHimm]

Louisa — I know it sounds like the doctors are not taking you seriously but I can hear that they are. You have objective evidence of something inflammatory going on with your enlarge lymph nodes and your markers that indicate inflammation is increased in your body are up. Your GP can monitor you and do basic rheumatology testing until you can be seen by a rheumatology.

Hang in there. Sometimes diagnoses take time. Take photos of your rashes, record your temperature and note any new symptoms.

K

[louisaj15 in reply to KayHimm]

Thank you for your advice, I will definitely start taking photos 😊

[Salzer]

Hi Louisa. I completely understand your stress and worry. I've just been diagnosed with lupus-like UCTD after years of back and forward to my GP and various consultants. I was sent home with no answers so many times and felt like most doctors I saw either weren't listening or didn't believe me. It's exhausting. And unfortunately it's pretty common as far as I can see. I can also relate to the low iron. My iron is crazy low no matter what I do.

I'm still pretty new to this but the advice that Roarah and K have given is spot on. I'd also suggest getting copies of your blood tests so you can keep track of what has been done and you can ask what they are testing for and why they've ruled certain things out. I even ended up creating a spreadsheet with all mine so I could see them in one place.

It sounds like you are being tested for lots of things and this will help narrow down what's going on. It's a slow, frustrating process for sure, but you will get there. Wishing you all the best and hoping you get some answers soon. S

[F1zz]

I completely empathise with this. I have been back and forth to doctors for 8 years and only in the last 6 months got a diagnosis but that was in my first rheumatologist appointment, they connected the dots straight away. I had various test that came back neg over yrs from gp so I thought I was going bonkers. When my hair fell out and I had a visible bald patch at my hairline I finally knew it wasn't in my head. I eventually pushed the gp to get me a referral, which he then forgot to do, as I rang the surgery after 3 months only for reception to say he hadn't done it. I also rang the rheumatologist office to prompt them after another 2 months of waiting. My biggest advice would be you know your own body and trust yourself. I would call rheatologist and just prompt them. Perhaps say ask if they get any cancellations could they call you? Sending you so much luck and support xx

[Hidden]

Hi so sorry to hear your in so much pain and having to deal with so many symptoms. Have you been referred to a specialist to rule out M.E, chronic fatigue syndrome for starters as you have problems with your glands throat and fatigue. Look it up and print out the symptoms and see how many you can tick. Also look up fibromyalgia too. It’s only when you look into other illnesses you tend to see a pattern I now do this and hand it to my Gp and ask could it be this. They don’t like it that your doing your own research but I have found out more about my own conditions than ever before. I like you am fed up of how long it takes to get appointments then being fobbed off whilst being unwell. It’s shocking. I am now paying private for most of my appointments and am now taking a loan for a hysterectomy and a gallbladder removal as can’t get it done on the NHS. If it’s taking ages I would consider getting a consultation with a neurologist and a rheumatologist. It cost me around £400 for 2 appointments with a rheumatologist and he added me to his NHS list. At least now I seem to be getting somewhere. Take someone with you to help get your point across as I have found when I go alone i am treated one way but treated far better when I take my son or partner. I really hope you get to find out what’s wrong with you. Keep a diary and get back to the drs ask for full blood tests and get a copy all your medical records to see if they’re is anything in the notes that may give you clues to what’s wrong. I wish you all the very best. Take Care and let us know how you go on. This site is great as everyone is so helpful. 😀

[Hidden]

Hi there and welcome. You ask what type of autoimmune this could be - answer has to be any of them.

However I have Sjögren’s and Sjögren’s is the autoimmune disease most closely associated with lymphoma - the risk is 40% higher with primary Sjögren’s than in other diseases or amongst the general population.

Also you can have malar rashes with Sjögren’s (I do) and many are anaemic similarly to Lupus. The fatigue is often out of this world because of very high viscocity of blood and secretions.

[HappySummer]

Hi Louisaj15

It sounds like they are trying to investigate and confirm some kind of diagnosis. Hang in there and stay positive. Since you have a lot going on I would advise you to keep s journal of ALL your symptoms from your whole body and when they started m.. I mean everything from rashes to colds, any infections etc. Take pictures of any rashes in your body too. It would be good for you to be seen by a rheumatologist. If you have already been referred you can call them to check if they have any cancellations. If you have the means and it’s an option to see a specialist privately. Best of luck and hope you find some answers.. it is a journey but hang in there try and be positive and keep the faith xxx

[Piscesdreamer]

Hello there!

Are you in the U.S.?

If so, you may want to write to the Mayo Clinic like I did. I was able to accomplish in one week what would have taken years by going to individual soecialists.

I wish you health and happiness!