London Lupus Centre

[scool]

I have a family history of lupus, scoliosis, MGUS and hypothyroidism together with other autoimmune diseases. I have been suffering with aching joints and other problems like plantar fasciitis, dry skin, terrible headaches and I have scoliosis and hypothyroidism. My doctor carried out X-rays of my hands as the fingers were deforming, but he said I had no blood markers for rheumatoid arthritis and no signs of this on the X-ray. He think my symptoms are age related. I'm 63.

I have decided that it might be best to see someone at the London Lupus Centre to rule out Lupus, but I don't know who I should see. Can anybody offer me advice? I've been told that Dr Bickerstaff and Dr Sanna are the only doctors available on a Monday when I am in London. Do I need to make another visit to see the best choice?

As my symptoms were ongoing, I paid for private blood tests which show:

High sensitivity C-Reactive protein hsCRP 5.47 mg/l [greater than 5 is high on their chart]

Red blood cells in urine – trace intact

TSH levels of 0.175 mlU/ [0.351 = optimal]

FT4 19.1 mmol/l [11.91-1.6 = optimal]

FT3 4.63 mmol/l [3.11- 6.8 = optimal]

Anti TG 24.1 IUml [below 115.0 optimal]

Ferritin 32.93 ug/l [

LDL cholesterol high 5.59 mmol/l

HDL cholesterol high 2.23 mmol/l

Vitamin D 48 mmol/l [50-375 sufficiency]

I take vitamin D supplements provided by the GP

[Star13]

Well the first thing I’d say from looking at those results is that your Ferritin and Vit D are very low. Ferritin needs to be around 100 and Vit D over 100 in order for thyroid medication to be working properly.

You don’t say what dose or what thyroid medication you are taking. Are you on both Levothyroxin and Liothyronine?

Also there are no B12 or Folate results there. Were they tested? If not they should be.

It’s possible that a lot of your symptoms are vitamin deficiency related. I’d be tempted to hold off seeing anyone at the moment, get your other Vits tested and then see where you are. Increase your Vit D dose - Better You oral spray 3000+ k is very good and should help boost it. You may need a full iron panel to see why your Ferritin is so low as anaemia can give you nasty symptoms.

I’d also think about joining the Thyroid UK Forum and post these results there as they are excellent at advising on what to sort first.

London Bridge should wait till you get this sorted.

[scool in reply to Star13]

Hi, Thank you very much for responding so quickly. I will arrange for more detailed blood tests to see what other issues could be causing my symptoms. The tests didn't include B12 or folate tests. I will try and be more proactive with my vitamins and get the levels of those tested too

[Cath24]

Lupus tends to be diagnosed only if you have antibodies, + meet several of the specific symptoms, and ongoing for a period of at least 3 months. This is why most people who might have evolving lupus end up diagnosed with UCTD and it may or may never progress to lupus. You can see the list of symptoms on the London Lupus centre, and be very honest with yourself and tick how many you've had for a period of 3 months or longer. you might have temporarily had symptoms in the past that have self-resolved quite quickly and never returned. Make a note of these too, but they would not count as an ongoing symptoms, unless they re-appeared and remained. It's important to be as precise as possible with noting down symptoms, you will want to be prepared for your rheumatology appointment.

Did you get tested for ANA, and for anti-dsdna and anti-smith, more specific to lupus? Complement levels should also be tested to check for any active lupus. Another essential test you ask your doctor for is a urinalysis, as this is quick and can offer important clues.

I agree with Star13 regarding your ferritin and vitamin D levels, and you may wish to ask your GP if a vitamin D injection is a possibility - these are administered in more critical cases. Without adequate vitamin D your immune system will never be optimal. Your ferritin levels are in the normal range, but they are on the lower end of the scale which is enough to cause you various issues depending on what your body is going through or if you are already low on energy. I would consider a gentle iron supplement, perhaps one which also contains B12, but speak to your doctor first please. You might also benefit from cod liver oil (or algae DHA omega 3 supplement if you avoid animal sources) but either way making sure it's from a clean source. DHA is crucial.

Do you exercise despite your plantar fasciitis? Maybe try a nice low impact exercise like swimming, which will also help you sleep better - sleep - this is the best thing you can do for your immune system. With autoimmunity you will often need more sleep than the average person needs. You can also refer yourself for physiotherapy to address any posture issues or pains and aches, it's just really important that we do everything we possibly can before we can say to a rheumatologist that despite doing everything possible, the issues persist. Rheumatologists can't follow us around every day, they can't see what lifestyle choices we make, so you will never quite get a personalised treatment - just prescriptions if necessary. The rest is up to us! Wishing you better health. Cath xx

[scool in reply to Cath24]

Hi, thanks for posting such a detailed reply. You and Star13 have been very helpful. It seems that I have been over hasty in my decision to see a specialist. The GP doesn’t think that my previous blood results show any evidence of lupus, but I just wondered why my joints are so painful all the time if it is not rheumatoid arthritis or lupus. The inflammatory markers in my recent [privately arranged] bloods made me think that perhaps I did have lupus or RA as I have so many other symptoms and because of the family history. I did have urinalysis, which was fine apart from - low sodium and red blood cells in the urine.

The GP hasn’t seen my private blood results. The surgery is so busy and they don’t seem to know what to do about the pain and my misshapen joints, so I just try to carry on.

My GP wouldn’t be willing to provide a vitamin D injection as one GP wanted me to come off the tablets as she said that I would get enough vitamin D from my diet. I still exercise and I'm constantly busy. I do yoga and use a foot roller when my plantar fasciitis is bad. Although my joints are painful, they are quite flexible

[Star13 in reply to scool]

Just so you know, plantar fasciitis is also common with thyroid problems. As I noted above, I think once you have got your thyroid and vitamins all where they should be a lot of your symptoms will improve.

I don’t know where you get your private tests done but Medichecks does one that checks all thyroid as well as antibodies plus B12 and Folate.

They also do a full iron panel. It’s always a good idea to test before you start supplementing anything and the type of supplements are also important too so once you have results it’s best to post them before buying anything.

[Cath24 in reply to scool]

I also agree with StriatedCaracara - if you have enough symptoms, especially misshapen joints (this actually suggests RA rheumatoid Arthritis rather than lupus, as lupus don't tend to get misshapen joints) then an ANA test can be offered - but I have to say to you first - ANA on its own is not diagnostic, and in many cases I find it causes more harm than good to find out, because many people can test positive and be healthy, and it's the '' not knowing '' if you are in that category or not, and having to live with that burden is not easy. I think that there is a reason a GP will not test your ANA so quickly. It can really affect a person psychologically and make you start to notice everything happening to you, which can have a detrimental effect on your health. This is especially the case if you test negative for ENA panel (the more specific antibodies associated with each autoimmune disorder), as many rheumatologists will not even look at you, even if you have symptoms. My ANA is very high, homogeneous, symptoms of lupus - but not enough symptoms, and ENA panel is negative. I have come to understand that an overactive immune system does not mean I have a full blown autoimmune condition - and one may or may never develop - and stress is the worst thing I can do to myself because stress can exacerbate things - it is a major trigger.

What I would recommend:

- consider an ANA test. If it is negative, you get peace of mind that your symptoms are maybe just something different - consider that covid has caused immune dysfunction in many people, young and old, including healthy young gym-crazy people, and it's the elephant in the room a lot of the time. Coronaviruses can also cause full blown autoimmunity in people predisposed to it - but not necessarily.

If it is positive, they will do an ENA panel. If it is positive too, you will likely get diagnosed quickly if you also have symptoms. If it is negative, then you can go down the rheumatologist route, but you will likely end up diagnosed with UCTD which is where many of us are. It might remain like this forever, or it might progress, but at least you can also be offered treatment if this is necessary, and might find that your symptoms improve.

- consider getting a scan for your joints - your concerns are valid and should be taken seriously. It might be osteoarthritis rather than autoimmune - but you can't self-diagnose - and you are absolutely entitled to decent medical care.

- keep a clear record (even better, a dedicated diary) of all your symptoms. Write down the start and end date for each one, and the length of time, and how it felt (pain, discomfort, itching etc.). This is crucial.

- Speak to your relatives and make clear honest notes about any chronic illness, the age it happened to them, and whether or not they are in remission. It doesn't have to be full blown autoimmune - even having thyroid or kidney issues in the family can provide clues - write it all down.

- take clear pictures of any rashes and visible inflammation, keep all the pictures together in a single file, ready to send to doctors if and when needed

This is a journey. For some people it can take years to get a definite answer - if you don't get one quickly, then ask them to help you treat your symptoms, and try to make those healthy life adjustments wherever possible, embrace an anti-inflammatory lifestyle. Many of us are healthier than the general population, despite our immune system being a little crazy! Take care of yourself, whatever this is, you will see it is manageable x