Since my last post in October things haven’t been great. The cause of my dysentery turned out not to be Shigella but a nasty bout of viral gastroenteritis that caused inflammation and bleeding in my intestines. The symptoms cleared up shortly after I last blogged but I still haven’t bounced back.
I didn’t run Goathland Marathon in November. Nor did I run Roseberry Marathon last weekend. I will now have to pull out of Hardmoors 30 on New Year’s Day. Even if I feel 100% by then, I am just not fit enough. I’ve been running, but I’m not logging the long miles and I’m not moving fast enough to guarantee I’ll be able to stay warm if the weather takes a turn. I’m hoping I might pick up enough to be able to drop down to the 15-miler, but that’s doubtful at this point and it may be another DNS. I’d rather not race than race and be miserable for several hours.
I don’t know what the problem is but I don’t think it’s my thyroid. It doesn’t appear that the gastroenteritis had a significant impact on my hormone levels. A blood test shortly afterwards was the best result I’ve had to date – a TSH of 1.3. I feel worse than when my TSH was borderline and no better than when I was significantly hypothyroid.
I gave myself a good few weeks to recover from the bug before I started to think something else might be going on. I was surprised that my thyroid test was so good as I was back to sleeping far too much, feeling freezing cold all the time and running like a tortoise on a path of peanut butter.
I gave it a bit longer. I started feeling dizzy and as though I wasn’t getting enough oxygen (but I wasn’t anxious and my heart rate was normal). The pins and needles, numbness and tingling in my extremities that I’d had when first diagnosed with hypothyroidism were back. They had seemed to clear up once I started a mega-dose calcium supplement. My calcium level is normal now but those symptoms returned. My eyes were ‘gritty’ and dry. I was achy and exhausted. My brain was cotton wool.
I’ve had Raynaud’s Disease for years. But not like this. Winter has become excruciatingly painful. A mere breath of cold air or even getting something from the freezer is enough to cut off the blood supply to my hands (and feet, nose and ears depending on the trigger). The cold hurts but once the numbness kicks in it’s not too bad. My hands will turn white then blue/grey/purple and I can’t untie my laces, fasten a zip or unlock my front door but I don’t feel much. It’s the re-warming that I dread. In Raynaud’s the blood vessels constrict too much when cold so you lose the blood supply to the extremities but then they dilate too quickly when they warm up. They turn red and the pain is enough to leave me sobbing (but with no actual tears, which I’ll explain below).
I have often come in from a run or a dog walk (and I’ve been wearing gloves or mittens) and been unable to remove my shoes or take the dogs’ harnesses off due to numbness. I have then ended up sitting on the stairs waiting for the throbbing, burning and searing pain to pass as my hands warm up so I can function again. This probably sounds melodramatic but it’s real. I would take the dizziness over the Raynaud’s any day. On top of that, I seem to be struggling with the cold throughout my body. I’m not generally a cold-blooded person unless there is something else going on like not eating properly or having low thyroid hormone levels. This winter I am extremely sensitive to the cold and once I’m cold I find it impossible to warm up unless I have a hot bath. Getting cold seems to leave me feeling utterly exhausted, shivery, achy and tired. I’ve started running on country lanes rather than trails so my feet stay dry. This is not me!
Raynaud’s Disease is relatively common. For most people, it isn’t associated with other conditions and it doesn’t cause long-term damage or lead to complications. Raynaud’s Phenomenon is more severe and is secondary to systemic/connective tissue autoimmune diseases such as Lupus and Rheumatoid Arthritis. Can you see where this is going?
The fact that my Dad has Systemic Lupus Erythematosus (SLE, the most common form of Lupus) means I have always been at higher risk of an autoimmune disease than the average person. The predisposition to develop a confused immune system is genetic. The trigger is environmental but we don’t know enough about this. A virus is often the apparent trigger. I developed full-blown Hashimoto’s Disease following a chest infection. Once I had that, my risk of developing pretty much any other autoimmune disease rose further. Most autoimmune conditions are more prevalent in women than men, so that’s another strike against me.
All this being said, the risk factors are only increasing the likelihood of something that isn’t that common in the first place, so it was far from certain that I would develop any autoimmune disease or that I would have more than one of them. Unfortunately it is beginning to look like the latter is a possibility. Was my stomach virus a trigger for a new disease? I don’t know, but something isn’t right.
Initially I thought I might be anaemic. I briefly had low haemoglobin levels a few years ago and the symptoms felt similar to how I feel now. I spoke to a doctor back in November and had standard blood tests for anaemia and various other things that could cause fatigue. They all came back normal. Which would be great if I felt normal. I began to question if this was all in my head and I’d become a hypochondriac.
Thankfully my GP didn’t suggest it was in my head. Taking into account family history and my Hashimoto’s, he sent blood samples to Leeds for a Lupus and autoantibody screen. They take a while to come back, so I had a three week wait to see my GP for the results. In the interim, my optician found multiple dry patches on the surface of my eyes and recommended some drops (artificial tears). I developed a strange rash on my right foot and was struggling more and more with numb hands and feet and poor concentration. I’ve been reading the same book for weeks. As I write this paragraph, I’m on day three of trying to compose a blog post.
I went back to the doctor for my results on Thursday. My thyroid levels had gone the wrong way, but only slightly and not enough to explain my symptoms (TSH 2.3). My thyroxine dose has been tweaked a little. Most of the other results were normal. One of them wasn’t and this is where it gets complicated. If you’ve made it this far, you deserve a medal. Bear with me while I try to explain something that I’m not sure I fully understand myself. I have a positive ANA result.
ANA stands for Anti-nuclear antibodies. They pretty much do what it says on the tin – they attack proteins inside the nuclei of cells. It’s very common to have a few of these antibodies knocking around in your blood, but if you have a lot of them it suggests your immune system is attacking you. What it doesn’t tell you is which cells and which proteins are affected. On its own, it doesn’t lead to a diagnosis of a specific autoimmune disease, but if the result is negative then it’s less likely (but not impossible) that you have one of the connective tissue diseases such as Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome and many others.
To take Lupus as an example, these diseases can be hard to diagnose. There isn’t a test that is both sensitive and specific. A test that is 100% sensitive will give a positive result to everyone with that condition. A test that is 100% specific will give a negative result to everyone who doesn’t have that condition. An ANA test is pretty sensitive but not very specific. Around 98% of people with Lupus will have a positive ANA. However, people with other autoimmune diseases can also have a positive ANA. To make it more complicated, 5-15% (depending on what you read) of healthy people will test positive.
There are other antibody tests that are more specific to Lupus – it’s unusual for someone without Lupus to have these antibodies so they can lead to a diagnosis. However, only a minority of people with Lupus will get a positive result, so a negative doesn’t really tell you anything. I tested negative for those antibodies. It neither rules Lupus in nor rules it out.
Healthy people testing positive for ANA tend to have a low positive result. The way the result is recorded is quite complicated. In a nutshell, the test needs to differentiate between a normal number of these antibodies that don’t cause a problem and a higher number that suggests the immune system is on the attack. The blood sample is diluted so that there is one part sample and 40 parts test fluid. Fluorescent dye is used and if ANAs are visible at this level of dilution then it’s a positive result. The sample is then diluted to 1:80, 1:160, 1:320 and so on until the antibodies can’t be detected. Most labs stop at 1:1280 and only report 1:80 and above as significant. Anything 1:640 and above is pretty strong evidence of an autoimmune disease unless you have another explanation for the result. If it’s 1:160 or lower and the person doesn’t have symptoms or risk factors suggesting an autoimmune condition, then they may be one of the healthy people who happen to test positive.
Obviously my result has been awkward and come in at 1:320. This suggests an autoimmune condition but needs to be taken in context and requires other pieces of evidence to make a diagnosis. It is moderately high. From my research, it looks like 3% of healthy people would have this result and 97% would not have this number of antibodies. So I could be in the 3%, but given I already have both symptoms and risk factors, an autoimmune disease of some kind seems quite likely.
Some of my symptoms fit with Lupus but I’m not sure it’s a complete fit. However, Lupus can attack any part of the body, so there is no standard symptom profile. My Dad has been unfortunate enough to have Lupus attack his brain and kidneys. Another person might suffer from rashes and joint inflammation.
Alongside my dry eyes, I have a very dry mouth and I have lipsalves in every room of my house, my pockets, my handbag and my car because my lips are never not dry. However, I take antidepressants and have always assumed this to be a side-effect. Sjogren’s Syndrome is an autoimmune disease in which antibodies attack moisture producing glands, causing a dry mouth and dry eyes (and often other symptoms and fatigue). It can be primary or it can be a secondary condition associated with Lupus or Rheumatoid Arthritis. Maybe I have Sjogren’s. Maybe I’m overthinking.
Back to the Raynaud’s. Although most people with Raynaud’s Disease don’t have an autoimmune condition, 10% will develop one. Raynaud’s alongside something like Lupus or Sjogren’s is secondary Raynaud’s and more severe. This was a red flag for my GP and one of the reasons I received a Lupus screen. My Raynaud’s symptoms are definitely worse than they have ever been.
What is needed now is a specialist opinion and further tests. There are plenty more antibodies that I haven’t been screened for and plenty of other kinds of tests that can be done. There’s no guarantee of a clear result at the end, but there might be one. My GP has been fantastic and referred me to a Rheumatologist (they deal with the connective tissue autoimmune diseases). My appointment letter arrived yesterday. It is on 25th March.
In the grand scheme of NHS referrals for a non-emergency, March isn’t that far away. Whether I’m prepared to wait that long remains to be seen. Whilst I would prefer to stay with the NHS, I’m also fed up of feeling like this and fed up of uncertainty. If I hadn’t already spent most of this year battling my thyroid disease, I might have more patience. I’m not feeling very patient just now. If I know what the problem is then I will learn how to manage it and I will rise to the challenges it throws at me. I can’t do that when I don’t know what I’m dealing with or even if I will be diagnosed with anything at all.
I am going to wait until the New Year and hope things pick up. If they don’t then I will look at my options for going private. It goes against the grain but I want my life back. I have new work opportunities on the horizon. I’m now living in a beautiful place with two lively dogs that I love to bits. I should be out there living and loving my life not sleeping it away.
2019 is the year I was ill. I want 2020 to be a better year. I haven’t given up hope that this is possible but I do get frustrated with how little I am achieving. I would love to be posting something more positive next year. I want to be an ultra runner again.