No diagnosis but lots of symptoms

[scool]

I have been diagnosed with hypothyroidism and am only a very low dosage of levothyroxine - which I don't think is managing my symptoms. However, I think that I may have lupus symptoms.

I have been diagnosed with dry eyes and suffer badly with discomfort, grittiness, pain and light sensitivity. I have always had nasal issues, with a post nasal drip and sinus problems. I have a cold type infection roughly every 6 weeks throughout the year and when I get Covid I suffer quite bad reactions and am ill for about a month. I also have quite bad ear infections and suffer with my ears in cold weather [I use ear muffs].

I have dry skin [but this is worse in the winter when the heating is on]. My hair is dry and falls out in clumps - even my hairdresser comments on it. However, I don't have bald patches.

I have suffered from really bad headaches for decades and always put those down to hormonal problems.

I also suffer from very painful joints and struggle to use my hands. My finger joints are very inflamed and are bending into very strange shapes. I suffer pain in my feet and have bunions and plantar fasciitis and suffer from tennis elbow and sometimes shoulder pain. X-rays show that I have scoliosis. My GP X-rayed my hands and said there were no "mothy holes" and so my symptoms were down to wear and tear.

I have recently started to suffer with cold feet which turn blue and I have pins and needles in my left hand.

My daughter had a blood test which suggested that she may have lupus and is on a waiting list to see a specialist. My father has been diagnosed with lupus, but not through blood tests. It seems that his diagnosis was through a skin biopsy [although his lung consultant was the one who gave him his diagnosis].

When I went to see my doctor most recently about my eye problems, he asked if there was a family history of lupus. When I told him about my father and my daughter he said that I shouldn't try and be like my father and told me that it was very unlikely that I had lupus. Even though it had been my GP who had mentioned lupus and not me. About 5 or 6 years ago the same GP checked my blood for lupus and told me that I was clear. However, I feel that, as I get older, I seem to have more and more symptoms.

I have only ever noticed a butterfly type rash once [in the winter] and I think that may have been caused by going too close to the wood-burning stove when I was placing wood on the fire. I don't suffer from ulcers.

I thought that I would ask for your guidance as I feel that my GP thinks that I am a hypochondriac [even though I only go and see him when my husband nags at me because he is worried about my declining health]. I do not want to have lupus, but I do not want to find that I have it and have been ignoring it for years.

Any help and advice would be appreciated.

Sue

[dg70]

If your gp won't send you to a connective tissue disease specialist rheumatologist then many of us have initially paid privately to see one. Your eye issues may be sjogrens syndrome as I have lupus and sjogrens. Your joint problems etc may be other autoimmune. It's quite common to have more than one autoimmune condition. You may not have lupus but you may have any number of other conditions. Seems like you need to see a specialist to find out. Also not all rheumatologists are worth it you need one that's an expert in this field. Write all your symptoms down daily, take pictures as this all helps when you get to see someone. Took me 10 years to get my diagnosis but you need it to get the meds and help you need do don't give up.

[scool in reply to dg70]

Thank you very much for your advice. If I was to see a specialist, how would you recommend finding one that is any good? Is there a recommended list?

Would I need a rheumatologist or a connective tissue disease specialist [or are they the same thing]?

I live in Wales, but I would be prepared to travel.

[dg70 in reply to scool]

Same thing but rheumatologists specialise in many areas. Some have a lot less knowledge of autoimmune because they concentrate on arthritis or other facets of their specialty. Many have taken the trip to the London lupus centre at London Bridge but its entirely private. You can shout out on here if anyone has a good rheumy they can recommend where you live. I did get diagnosed privately. Costs around £200 for around 45 mins. Blood tests can be ordered by them through your gp so you don't have to pay for them. That's in England. I now go to a lupus centre of excellence which are doted around the country on the NHS now. You can get details on lupus uk website. You can look up private consultants near you by looking up your local private hospital. They usually have a full bio of each rheumatologist and what they specialise in. They nearly all work in the NHS too. You can even ring their private secretary and ask if they have knowledge of lupus, sjogrens, reynauds etc. You find that researching your consultant is key then find out how you can be referred to them. I think the London lupus centre you just ring up. Hope you get on OK. This is a start to your journey just don't give up.

[scool in reply to dg70]

Thanks for all the encouragement and advice. I've been to my GP this morning and he's ordered blood tests for lupus, so hopefully they show some clue to all the symptoms. If not, I will definitely take it further with private tests. Thanks again

[dg70 in reply to scool]

No problems. Just be aware that many of us with Lupus/Sjogrens are negative with blood tests. I am, so you may need a doctor who is prepared to look at symptoms without blood tests. A leading Lupus expert Dr Kaul at St. George's, Tooting has published info on this and the dangers of just looking at blood tests to diagnose people. If it happens to you then don't take it as you haven't got it. Also your GP cannot do some of the specific blood tests for autoimmune, they need to be ordered by a Rheumatologist. If you have this issue then there are loads of us that can further advise. Just keep a symptom diary and pics its invaluable. xxx

[LuluM25]

Good solid advice already given but I just wanted to let you know that 35 years ago I had very similar symptoms for 2 years and eventually my GP put it all together and tested for Lupus. That was after my previous diagnosis of underactive thyroid. I had never heard of lupus then!

So persevere, it sounds very likely that it's lupus and I hope you get the help you need.