Robert Cave tells the Parathyroid Journey of his wife Kathleen who finally had surgery in 2018

In 1998 we were on holiday at Pontins. A friend and his wife said, “Do you fancy coming to Cheddar Gorge?” We said we would be delighted. It was a glorious sunny day.  As we were walking around, Kathleen said she had a bit of a headache so we sat on a bench in the shade, but the pain got steadily worse. She had her sunhat on as she used to get slight headaches prior to this but this was a lot worse. We eventually set off back to camp but her headache didn't ease, we only had a couple of days left but her headache was still there as we left for home. She took paracetamol to no avail. This continued for ten days so Kathleen went to the doctor, who said it was a migraine. So as the year went on she had this niggling head pain with periods of intense pain.  She then developed a bit of depression and was given antidepressant pills.  They didn’t have much effect but she continued taking them. She was told it was menopause but she went through that years before, then after about a year the headaches suddenly stopped but the depression continued.  I use to work a three-week shift cycle, and every time I was on nights she would beg me not to go, but I had to. It caused untold arguments like “Oh Jean's husband is on days regular why can’t you” I was an official in the coal mine and had to work this cycle. The depression got worse and Kathleen starting to forget things.  I put it down to the depression.

Around 2001 she started to get lower back pain and pain in the pubic area, the headaches came back. The doctor said it was a cluster headache, he arranged an x-ray of her back but nothing was found. She was starting to get upset tummy as well but we put that down to the pills she was taking, and the depression got worse still.  That year her sister said 'Kate I am going on holiday to Salou, do you fancy coming?' Well, Kathleen had never been abroad before so I said 'let’s go'.  It was only a week's holiday so wasn’t too bad,  but the sun brought the headaches back and she had skin blisters appear on her skin. She was not tanned so we got some allergy sun cream. When we got home, the doctor diagnosed an allergy to the sun which is very common so she kept out of the bright sun to keep the skin blisters at bay. The upset tummy and headaches kept coming. The doctor gave her Omazaprole for upset tummy which only helped marginally but continued for a few years. In 2008 the pain in her back and front got worse so was sent to have camera tests front and back but nothing found, so again she struggled on.

In 2010 Kathleen had a kidney infection or UTI and was referred to the Urology dept who found 4 kidney stones. An ultrasound treatment cleared up the stones. We did wonder if this was causing her back pain as it subsided for a while. In 2011 whilst crossing the road from the hairdressers Kathleen fell and broke her wrist. It took 12 weeks to heal. Then in 2012, we went to see the Olympic torch coming through our local town. We parked the car and walked 600 meters to the junction. Just as we got there, Kathleen went forward and nearly hit the wall but I grabbed her.  It was as though her legs stopped but her top half hadn’t.  This started happening on a regular basis and her hip pain increased dramatically. We again went to the doctor who arranged a DEXA bone density scan. Well, that came back very low, it was - 3.2. The doctor prescribed Calcichew, Vitamin D and requested a blood test.  A week on, the doctor phoned and said 'stop taking them both as your PTH and Calcium levels are too high'. I had never heard of PTH. The doctor referred Kathleen to an Endocrinologist. When we finally got an appt 6 months later, he said 'nothing to worry about, it is slightly high but will be ok'. The levels were 'calcium 2.75, and PTH 11.2.  It was around this time Kathleen's memory was getting a bit bad. When I asked about her memory and back pain, I was told; “oh this has nothing to do with it, it's age-related, I will see you again in 12 months". In 2012 Kathleen again fell and broke her wrist, it took a while to heal.

In August 2013 Kathleen tripped over the threshold going out and fell, breaking her upper arm. After 10 weeks it had not healed so they put a pin and screw into her arm, taking a sliver of bone from her hip to graft it. After a further 12 weeks, it had failed to heal so they decided to use a device called exogen which is an ultrasound device that she strapped to her arm twice a day for 40 minutes.  Exogen works by sending ultrasound to the break and initiating healing.  Again this failed. I was told it could be the osteoporosis causing it and another op was scheduled in October 2014 using a larger pin and a plate. In December, they said it will be ok even though it had still not healed, the pin and plate would hold it. This gave her a lot of pain along with the other bone pain and increasing symptoms, but no one had said at this point she had hyperparathyroidism.
 

We saw the endo on a yearly basis, with the same conclusion each time; 'just slightly elevated nothing to worry about'. I read Dr. Norman's site and realised Kate must have hyperparathyroidism.  When I asked the endo this, he shrugged and said no.  Her levels were Cal 2.75, Pth 12.5. He said it was only slightly high but it is in our tolerance for an elderly lady. I asked 'is there any point in coming to see you anymore?' He just shrugged and pursed his lips.
 

We did see him for a few years more, then at Xmas 2016, she had a serious UTI and a temperature of 40.  She was sent by ambulance to urology and found to have a kidney infection and kidney stones again.  The consultant said, “well she has got hyperparathyroidism". That was the first time anyone had said she had Hyperparathyroidism. He said, "we can’t do anything with the kidney stones till the parathyroid is sorted, that’s the protocol, see what the endocrinologist says, even though you have kidney stones it can’t possibly cause you this amount of pain in your back, it must be the parathyroid causing it". Before the yearly appt with the endo February 2017, I researched hyperparathyroidism and was horrified to note the number of symptoms Kathleen had. I drafted a few questions to ask the consultant but found at the appointment he had retired. His replacement said, “How do you feel about an operation as you have elevated PTH and calcium and low Vitamin D”.  He arranged a US and sestamibi scan and a referral to a Surgeon, Mr. Quarashi. I was flabbergasted, my questions were irrelevant as he covered it all. Calcium was 2.7 and PTH was 11.75.

It was a few months before we saw Mr Quarashi who said "the sestamibi scan is inconclusive but you definitely have a problem so I am referring you to Sheffield as the surgeon there has a better setup than I for finding elusive adenomas" He was ok and was very sympathetic to her symptoms but like most appointments, we were only there a few minutes. The surgeon at Sheffield was very nice, he put my wife at ease and said: "we will get you pre-op-ed and then get you in". We walked out of there quite elated. Kate said, “Are they really going to do it after all this time waiting, I can’t believe it?” I said; "yes looks like we are finally going to get some closure".  We drove back to Doncaster quite happy. At the pre-op in December, after relevant tests, we went for an interview with a nurse who looked at Kathleen and said: "I detect you have Dementia".  I said; "Well she as a bit of memory loss but it's caused by this condition".  In a patronising way she said “Please darling you will still get your op but it will have to be discussed with the doctor’s as you can’t just say you want it” I asked what she meant by that she replied; "well I am not a Doctor, I just see if the Patient is ready for the op and know what is entailed and I don’t think Kathleen can say she understands". She then said; "Kathleen if I told you to make a cup of tea could you do that?" Kathleen said yes, "but if I said go to London on the train, go and get a ticket then go and get on the train could you?" Kathleen said, "No Bob would get it and take me". The thing is my wife has always been a bit shy so no she wouldn’t go on her own it doesn’t mean she can’t though.
 

When we saw the surgeon he decided to monitor Kathleen for a few months saying her latest levels were normal and he had been asked to have a word with her about the operation “Do you want this op” Kathleen said; "yes if it makes me better and bob wants me to have it".  He quickly replied; ”It’s not Bob having it so what I propose is that I refer you back to Doncaster to be monitored.  If it raises we will think again”. I immediately thought this had come from the pre-op nurse. At a review appointment in Doncaster a few days later we showed the letter from the surgeon. He was dismayed at the decision and asked if we wanted a second opinion as the blood test that we had prior to Doncaster appt showed 2.75 Cal 12.2, PTH 55.  He offered to write to the surgeon in Sheffield.  I wrote to him also. On receipt, he called me to say he was not sitting on the fence but was concerned Kathleen’s memory would get worse,  but he arranged a further appointment with himself and the endo as well. It was a good meeting and he agreed to do the op as the blood levels were higher again but it was the endo that suggested the op would be of benefit to both memory and bone pain and the constant sickness she had every morning.
 

The operation went well. Three enlarged glands were removed. The following day Kathleen felt a lot better. The improvement in her walking and sickness was immediate but over a few days, the site of a fracture that was pinned and plated started to get painful. We think it may be finally starting to heal. The endo agreed, saying calcium would be going to the fracture site to try and repair it.  Kathleen's memory has improved slightly and confusion has also improved. I didn't think it would completely reverse but her manner has improved, she seems brighter and more alert, so all in all we can say the operation was a success at this moment in time and I feel sure her condition will improve.
 

In conclusion, I would say if you have or suspect you have some rogue glands in you or your loved one’s neck keep pushing as you will find it an uphill journey and will have to fight for the operation, but fight you must.

I would like to wish all who end up in this predicament the best of luck and to keep pushing.