Hyperthyroidism and me - Blogs 1,2 and 3

This is a departure from my usual updates on my business, it is what journalists hate to do most of all, writing about themselves.

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I have chosen to write this blog because someone out there is going through exactly what I am; they have an undiagnosed overactive thyroid. I hope by telling you what happened to me, it may also help someone else.

For just over a year I have been battling a condition called hyperthyroidism, unbeknown to me an organ in my neck has gone into overdrive making my life and the lives of others around me a misery. This first blog is in three parts, but as yet it has no conclusion.

Forgive me for the length, but it is a frank, open and honest discussion on the subject and the effect it has had on me. Please, if you have similar symptoms do something about it.

This first picture is by Liz Henson Photography and was taken in May 2015, BH Before Hyper.

Scroll down or click on the icon to read the blog

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Oh No -€“ It'€™s The Change!

My problems started about in June 2015, after I completed a stressful week'€™s work and found I had lost half a stone in weight.

Every year since I became self employed, that week has always been an incredibly busy one ending with Bacup and Stacksteads Carnival, of which I am chairman. It has resulted in me losing a few pounds before, but never this much. Still, I was no€™t too worried.

But then the weight just continued to fall off, €another 2lbs, then another and before long a stone had disappeared. I thought to myself, this is evidently what happens to '€˜ladies of a certain age'€™, as my 49th birthday came and went.

Night sweats and daytime flushes began to dominate my life. I would dread going to bed as I had many a sleepless night. I would wake at 2am with soaking wet night clothes, the tell-tale river flowed over my body, I felt like I was on fire yet the bedroom window was open and the snow was falling. To anyone else, it was sub-zero in the room -€“ to me, it was a sauna. On went another dry pyjama top.

My heart would race; at one stage, while '€˜resting'€™ and preparing to go to sleep, I counted my pulse and found it was 140 beats per minute. On many nights I would leap out of bed at ridiculous o'€™clock because of searing cramp in my calf. I would frantically stamp out the spasm like a mad woman with a passionate hatred of her lower limb, before returning to the sheets and trying to get back to sleep. My itchy body would irritate me so much while I was sleeping, I would wake up to find new scratches and cuts on a daily basis.

On getting dressed in a morning, I chose my wardrobe carefully; T-shirts in the winter with an easy to remove cardigan or jumper. I would turn up on a job and within minutes be stripping down to that T-shirt as my body temperature soared.

Periods had also become sporadic and short lived; this was not an issue I was complaining about, although they were also unpredictable with a gap of anything from two to six weeks. No good for someone who likes to think they are in control and know what is going on.

Like many women with similar symptoms, I put it all down to the next stage in a woman'€™s life, the menopause, the change, the end of my childbeariing years. After all, it was where I expected to be heading at my age, even though my Mum told me I had at least another 10 years to wait.

After Christmas, while others were concerned about how many pounds they had put on, my weight had reached an all time low and I found myself tipping the scales at 7st 10lbs;€“ this was nearly two stones lighter than I had been in the summer, with no dieting. People were starting to notice and I think they feared something far worse than what was really going.

I arranged to see my GP, as something was definitely not right. When she heard all the symptoms, felt my stomach and noted all my details, a blood test was arranged. Well, not just one, as I discovered. The practice nurse removed five different vials of blood and remarked, '€˜Your doctor is certainly organising for a full MoT,'€™ and she was.

When the results came back in early February, I was diagnosed with hyperthyroidism - an overactive thyroid. The skinniness and weight loss were down to two hormones that had gone into overdrive. The results showed free T3 and free T4 were operating well above the normal level. T4 was twice the norm and T3 was three times. TSH, Thyroid Stimulating Hormone, was at less than 0.01, when it needed to be between 0.3 and 0.6, it tells the others what to do.

I was prescribed a low dose beta blocker and referred to a consultant, but within a few weeks my condition had worsened considerably. This picture was taken in March 2016, Liz Henson Photography, I think my neck look very scrawny.

March 2015

I got my appointment through for the Royal Blackburn Hospital but the earliest date was April, that meant€“ 12 weeks to wait!

Meanwhile, I had developed shaky hands; so bad I struggled to use a knife to prepare food, then once the meal was on the table I could not hold my cutlery still enough to eat the food. Night after night, I would end up crying at the table and leaving, my plate hardly touched unless I could eat it with my hands.

As a journalist, my work involved writing, typing and taking photographs. I found that I couldn'€™t hold my pen steady and I was finding it very difficult to write. I couldn'€™t keep my hands from shaking as I tried to type on a keyboard. I felt that I had to explain myself to clients when I shook their hands in welcome and I could not stop my hand from shaking. I would tell them I had a medical condition and was awaiting treatment; most importantly, that I had not been drinking!

Then along came the cough. It was a tickly, strange irritation in the middle of my throat that caused a rather pathetic sounding half-cough that could go on for minutes. Several times, sometimes while interviewing, I began coughing uncontrollably, so much so I cried and tears began to flow as I struggled to get the cough under control. I kept apologising to clients and would beg for water in between coughs until it finally ceased. When my composure returned, I desperately tried to continue with my job in as professional a manner as possible. But I was so embarrassed.

So I booked another GP appointment in February, when it was noted that I had 'mild hand tremors'€™ and was '€˜looking anxious'€™. I was prescribed a very low dose of thyroid medication; Carbimazole. I told my GP that I couldn't wait until April to see an NHS consultant, as that would make it 12 weeks since diagnosis, so I inquired about going private. That really was against my principles. The NHS is a valuable resource and one we should be proud of, but I couldn'€™t wait. This was affecting every aspect of my life. My GP agreed to provide me with a covering letter, a copy of my medical history and the latest blood MoT.

'€˜Early March?'I am self employed and I could attend any appointment the private clinicians cared to offer me. I copied my notes and sent off a duplicate version. The appointment day came and I was nervous, but just before I set off, the private hospital rang and the doctor said, '€˜You have been booked in with me and on looking at your blood information I have realised that I am the wrong person, you need endocrinology.'€™ They had made a mistake.

I was offered an appointment in a week with the right person, which I accepted, but I also left them in no doubts as to how I felt.

A Grave Answer

'€˜You'€™ve got Graves' Disease, as in the person who discovered it, and not where you will end up!'

The gentle humour exuded by the consultant made the acceptance of my condition'€™s rather grim name ever so slightly more acceptable. But at least it had a name, and now I had a clearly identifiable reason for all those symptoms.

Arriving at Highfield Private Hospital in Rochdale, I was angry; I had been made to wait yet another week because of a mix-up over whom I should be seeing and my symptoms now numbered 15. My hands were shaking, my body was all over the place, I was hot, I was sweaty, I was concerned, I was scared.

Fortunately, the consultant could not have been nicer or more welcoming. As I read out my list of symptoms '€˜Not finished yet there are more' he announced that it was like I was reading a text book, because I had almost every problem associated with someone who has hyperthyroidism.

He asked if I had any difficulties with my heart and I said not really, I thought it was under control most of the time, having had two successful pregnancies that never affected blood pressure. However, on checking my pulse, he asked if I thought a resting heart rate of 120 beats per minute was '€˜normal'€™?

He then told me something that shocked me. 'If you were not as fit and healthy as you are then you would have ended up in hospital by now.' Now that was scary.

My initial medication was increased six-fold and a stronger beta blocker was added.

But there was another problem; I could afford to have one private appointment at 160 pounds, but not two. Fortunately, the consultant I saw at Highfield also works for the NHS at Rochdale Infirmary, so I was transferred across to his patient list.

The new beta blocker calmed the tremors rapidly. My work as a journalist became easier as my hands no longer constantly shook. I could prepare and cook meals safely, because holding a knife was no longer a dangerous activity. Food could be eaten with cutlery and not fingers, and my heart was more under control.

However, the thyroid medication caused side effects that left me running to the loo and, far too regularly, they also caused terrible itchy skin, leading to a secondary antihistamine to counteract the medication'€™s side effects. When I informed my pharmacist of the side effects, I was told to stop taking the tablets while I awaited my first NHS appointment at the end of May.

I asked at my GP surgery if they were going to do a blood test to check my levels before the Consultant'€™s appointment, only to be told that, because I was under a consultant, it was now up to them to sort it out. As a result, on my first NHS hospital appointment, I had no information to give the doctor and thus he could not prescribe a different medication because he did not know at what levels my hormones were. More blood tests.

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A week went by and I received a copy of a letter that had been sent a week prior to my doctor. It contained details of new medication but, when I rang the surgery, it has not been received. I took my letter into the surgery and it was photocopied, the prescription written and new medication dispensed -€“ Propylthiouracil. This picture was taken in June 2016 at the carnival of which I am chairman and I think I look terribly skinny.

I was at my most fragile at that time, not only feeling the effects of medication but scared about the future.

The new tablets left a particularly nasty taste, but I persevered. Unfortunately, I had further side effects and this time they included hair loss. This seems such a simple matter, but I found it to be an incredibly psychologically damaging and visible manifestation of what was happening to me on the inside.

My thyroid does not stick out of my neck like an orange, as one friend had; it does not really protrude at all unless you are a medic and used to seeing these things. In my notes it is described as a '€˜mildly diffused goitre'€™. But hair loss? That is something you can see and feel. For the first time in 30 years I had around 4in cut from my hair. And I hated losing it.

After seeing my GP, she arranged for me to have further blood tests, but I had to fight to get a copy of the results. At first I was sent a text to say my blood results were normal; that was a laugh out loud moment! When I had not been called after five days, I called the surgery.

The admin staff on the results line informed me only the doctor could tell me the results. No amount of begging succeeded; '€œShe may call today {Friday} or on Monday'€. By Tuesday, another four days later, I rang again as I had still not been informed. I requested a print out and was told it could be ready for collection in two days'€™ time. Then the doctor rang, levels had lowered and she would send the information to the consultant. Thursday arrived and I went to collect my print out,€“ which of course had not been printed out.

When I looked at the levels, I read that free T4 was now at a normal rate and rang the endocrinology secretary, as I felt it important the doctor be aware. No they had not received these latest results,€“ so I scanned them in and emailed them to him personally.

I had been sent an appointment for an ultrasound of my thyroid but, as yet, had no further consultant appointment. When I spoke to the secretary, she informed me the doctor was going away on holiday but there had just been a cancellation in early August and, if I was quick, it could be mine. Needless to day I grabbed it. Next appointment August 2nd!

Reality Sets In

'€œWhat name did he say?'€

The fact was, the doctor had said my official name, not my journalistic one that everyone knows me by (I write under my maiden name). My married name is double-barrelled; not for pretentious reasons, it is far more complicated than that.

So the doctor called out my married surname, only he didn'€™t. He just used the second name and I didn'€™t recognise it. I turned to the gentleman sitting next to me; '€œWhat name did he say?'

'€œCatherine Levack.'

'€œAh right, me then, but he'€™s not my doctor.'

I proceeded to follow the man into his consulting room.

'€œLast time you were here you saw my colleague,'€ he said. '€œI am the lead consultant.'€

Oh, I thought, the boss.

Anyone who has ever been salaried knows that it is rarely good news when you get called in to see the boss. He proceeded to run through where things were at, starting off by discussing the results of the ultrasound, which had taken place when I had eventually got to the right hospital. What a nitwit! (I went to Rochdale Infirmary and not Fairfield General in Bury; fortunately, there is only 15 minutes between them and the radiology department staff were very understanding.)

The consultant described my thyroid as venous and then went on to talk about radioactive iodine; in fact, that was mentioned rather a lot during this consultation.

While waiting to be seen, I ha€™d got chatting to another female patient. I asked if her hair was falling out too, like you do, to which she explained she had had radioactive iodine in January and was no longer on meds. I quizzed further, only to discover that, after the radiation, she had four weeks when she could not be within 2m of anyone. All that and it had not worked. She was back to see if further radiation was required.

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From the blood results, I knew one hormone was now behaving itself and I naively thought that my medication would be reduced. I even told my friends on Facebook, in my upbeat optimistic sort of way, as I headed to the hospital.

When we came to discussing side effects, the consultant had no explanation for the itchiness that has been dominating my life since starting on the new drugs. Before diagnosis, this was a particular problem, especially at night when I would attack my own skin. He ordered more blood tests to see if there was any other underlying reason for this complaint. I also explained about the hair loss and other issues. This picture shows the result of a morning's bath.

I proffered the blood test results that I had fought so hard to get a print out of, only to be informed it was the first time he had seen them and how grateful he was that I had brought them with me.

So the doctor'€™s letter and my email had both gone missing. What is it with the link between Bacup and Rochdale?! For some reason the only communication channel that seems to work is the consultant sending letters to my home address.

I questioned what TSH (Thyroid Stimulating Hormone)€“ was and it was explained that it is in the pituitary gland and it controls the hormone levels in the thyroid. At less than 0.01 with a minimum requirement of 0.3, he agreed with my summation that it is effectively '€˜asleep' and doing nothing. The reality hit me. The medication I was taking was only working on the two hormones in the thyroid and not on the TSH.

I was told to consider the radiation or surgery options seriously and given an increased prescription, half as much again of the thyroid medication, and a form for my GP for a blood test two weeks prior to the next appointment. As I was preparing to head to the vampires who were going to extract more blood, the consultant told me to wait. I was then given a leaflet on hyperthyroidism and another from The Christie Hospital in Manchester all about Radioiodine Treatment for Thyrotoxicosis. It made very interesting reading.

Most people with an overactive thyroid gland will be cured with radioiodine treatment, it says. Now let me read a bit closer and see just what the stats are. Within a year, five out of 20 will have normal thyroid hormone levels and 12 out of 20 will be hypo, i.e. have low thyroid hormone levels. According to the booklet, the thyroid stops making too much hormone after one treatment in 17 out of 20 people (but not the patient I was talking to) and a second treatment is required by the remaining three. However - and very crucially - with time, 17 out of 20 people will go hypo, needing medication for life, because they then have an underactive thyroid gland.

I posted the stats and my dilemma to my Facebook friends and prompted a very full and frank debate. Fortunately, I got an amazing response and many people commented with their own personal experience, which was incredibly useful and comforting. One friend had had her thyroid removed three months earlier and I was able to see her scar; it made me realise what I might look like.

As a result of this discussion I made my decision. I do not trust the radioactive option so if I have to make a decision I am going to opt for the operation - a TT as it is called Total Thyroidectomy. It sounds drastic and yes, it will lead me to go hypo, but the chances are that would happen in any case if I try radiation, so I believe I have nothing to lose.

The same day I picked up the phone to call the consultant's secretary and inform them of my decision, the letter arrived from the hospital and is stated that should the medication not work I had to 'make a definitive decision sooner rather than later'.

I am now awaiting the next step; my follow up appointment in September, if not sooner.

Hopefully, with a bit of luck, I will be able to celebrate my 50th birthday on 4th September, safe in the knowledge that I will soon be able to take back control of my body and my life. I will continue this blog after the next appointment.

In the meantime, my husband's astute verdict. 'It was not the change? Oh no, does that mean I have to go through all this again!' Yes dear, I suppose it does.