An M.E Diagnosis: Remember- It May Not Be M.E

 How A Diagnosis And Treatment of Hyperaldosteronism Significantly Improved My Chronic Fatigue Symptoms.

As I’ve stated in a previous post, my fatigue symptoms began in 2003 following an injury to my spine in 2001. With time a pattern coud be seen with flare ups with pain and fatigue with relatively improved  periods in between.  I was virtually house-bound for years. With going out for an hour twice a week. For a time I was also virtually bed-bound, resting during the time I wasn’t caring for my children, or carrying out my basic care needs.

During a flare up in 2006/2007 I was referred to an M.E Clinic in Exeter (we live in North Devon). The journey took close to two hours. The clinic is situated in the psychiatric hospital. They were very helpful in dealing with fatigue for the appointment. A room was available with a bed to have a rest before the appointment. This was very welcome and made the day more bearable.

The day itself was very challenging . Just getting washed and dressed each day was way above my baseline activity at that point. Getting ready, travelling and dealing with sight, sound and movement were way too much stimulus for my nervous system to deal with.

I was seen by a Consultant. I always get psychologists and psychiatrists confused, so it was one of them. He was very blunt when he told me…

‘It is M.E. There is no physical cause, so don’t go looking for one.’

I looked at him straight in the eye, whilst in my head I told him to “F… ‘go away'”

How dare you say that with your limited knowledge on the subject! No where near enough studies had been done carried out on M.E. I knew that one day he would be proved wrong when more knowledge of either M.E or my medical condition was discovered.

It was in August 2007 that the World Health Organisation stated that M.E is a physical condition. Yes! It didn’t take long for him to be proved wrong.

Okay, fast forward a few years with my pain and fatigue symptoms continuing with the same pattern. I received a diagnosis of Ehlers Danlos Syndrome, along with my son when he was in Year 9 (roughly 2010). At some point around 2013/2014 I discovered that I had high blood pressure. Some very close relatives in my family also have it, so I was aware that it may be an issue for me. On discussion with my GP I decided I would keep an eye on it whilst trying to lose weight to see if that helped. So, I started to go for a walk when my daughter was at school. I didn’t build up slowly enough, as I was keen to lose weight and wasn’t feeling too bad initially. This was with walking for ten to twenty minutes every other day. After two or three weeks the fatigue began to return. Carrying out my usual activities started to become a challenge. I didn’t become as bad as I had been in the past, as I am much more aware of the warning signs and pay attention to them.

I ordered some leaflets from the M.E Society to see if there was anything new I could learn. I wondered if I had POTS (Postural Orthostatic Tachycardia Syndrome) as my symptoms became worse on standing. There was a big difference between my lying and standing blood pressure. It went up more than it should have done (in my opinion). My pulse increased a huge amount too. My GP referred me to the Cardiologists.

On a little side note I would like to express how well I have been treated by my GP. When so many people with an M.E diagnosis are NOT REFERRED ANYWHERE DUE TO THEIR M.E DIAGNOSIS. I find that ludicrous. But it makes me more grateful for the referrals I’ve had for my pain and fatigue through the years. 

I was also fortunate with the Cardiologist I saw. He has an interest in POTS and had recently been to a convention. Initially I had a heart echo, which was normal. I also had a 24 hour heart rate measurement, which showed tachycardia. The ECG I had following this showed Sinus Tachycardia. This explained my heart rate going over 150 when I hoovered one room. The 24 hour blood pressure monitor showed I also had Hypertension.

At this point to mobilise out of the house I needed to use two crutches. The longer I walked for the heavier my legs became, which wasn’t that far. I would need to drag my feet along the floor to move my legs forward. It was a massive challenge. It just felt as though there was a missing connection between my brain and my legs. We ended up buying a wheelchair, as we had previously booked a cruise. There was no way I would be able to move around the ship safely with the crutches. The last thing I wanted to do was cancel the holiday.

I had a Tilt Table Test next. I found the test a challenge. I didn’t realise they moved you from laying to standing so quickly. The good thing about the test was that it showed my symptoms started gradually after standing. The problem was that I couldn’t manage to stand long enough to complete the test as I had nothing to hold on to, even though I was secured to the table. The consultant carrying out the test informed me that I didn’t have POTS as my heart rate didn’t increase enough.  I was so upset. I’d had so many tests in the past which were negative. I just could not believe that I felt as bad as I did and nothing was wrong with me.

I was surprised on the follow-up appointment with the Cardiologist. He ordered a blood test for my renin-aldosterone levels. I had never heard of these chemicals before. I was more surprised that the test actually showed ‘markedly elevated levels of aldosterone’. I was sure that wasn’t going to show anything.

This led to a referral to the Endocrinologist. He ordered another blood test as I was taking NSAIDS (etoricoxib). He said the test should be normal after two weeks of remaining off the medicine. It seemed like a long wait for the next lot of results. They were still a lot higher than they should have been. To confirm a diagnosis of Hyperaldosteronism I needed to have a Saline Suppression test. The test was done a week before Christmas in 2015. I was given a recliner chair, as my feet had to be elevated. A venflon was put in to each arm. A blood test was then taken before being given two or three bags of saline solution. If I’m correct this would lower aldosterone levels with remaining in a laying position. A blood test is then taken straight after the saline infusion has finished. If the aldosterone levels remain high, the diagnosis is confirmed. The blood is then sent off to be tested. I had to wait until well into the New Year for the results. Once I had the Hyperaldosteronism diagnosis I had to have a CT scan to check my adrenal glands for tumours. There is a percentage of Hyperaldosteronism which is caused by a tumour. In these cases, when the tumour is removed, the hypertension is normally always resolved. My adrenal glands were of normal size and symmetrical, thankfully. I was not looking forward to having a venous adrenal test. This is where they take a sample of blood from each adrenal gland, by placing a tube up through a vein in each thigh.

In contrast to what I was told by the Psychologist/Psychiatrist. When the Endocrinologist told me there was no visible tumour on my adrenal glands. He said that it doesn’t mean there isn’t one there. He went on to say there is probably a small one that couldn’t be detected by the CT scan.

I was prescribed 25mg of Spironolactone. This helps to balance out the sodium/potassium levels, which the adrenal glands are unable to do with Hyperaldosteronism. Within twenty minutes of taking the first tablet my fatigue symptoms lifted. The heaviness in my face lifted. The heaviness in my legs disappeared. Even the burning sensation in my head went (I have experienced this since). An hour after taking the tablet I was able to take the bus to a local child’s play area with my husband and daughter. What’s more, I was able to do this without using the two crutches I had relied on for so long. I was amazed at the transformation of my symptoms. I actually felt so much better than I had felt since the fall I had in 2001. To this day I have not needed the crutches to walk outside. The only issues I have with walking now are pain with the osteoarthritis in my knees and pelvic pain with probable Endometriosis.

The diagnosis and treatment of Hyperaldosteronism has changed my life. I actually feel like I have a life now. Before I was just existing, however much I tried to push myself to do things with my family. I honestly feel like a different person. All my cardiac symptoms have gone. I no longer have crushing chest pain on small exertion. It takes longer for me to become short of breath, (I still have Sinus Tachycardia), my blood pressure is under control, I am able to hold longer conversations as my face never gets so heavy that I struggle to form the words with my facial muscles. Also, I don’t crave bananas. Some days before the treatment, I would eat three small bananas a day. One of the symptoms of Hyperaldosteronism is low potassium! I haven’t had a banana since taking the Spironolactone.