Jo’s story: a long battle

I am a 43-year-old single mother to one ‘grown-up boy’ who is 17 years old.

Like many other thyroid sufferers, I am not sure how long I have been hypothyroid. However, if I look back on my life I can pin-point it way back in my life and perhaps in my teen years.  Things, however, became more apparent approximately 15 years ago and the last 3 years before my diagnosis were horribly miserable.

I have always struggled with controlling my weight. I am one of those people who gained weight on Weight Watchers!

I had my son at the age of 25 and soon after that the weight piled on and on, my confidence fell underground (unusual of me as I have always been a very confident person), I started becoming more and more ‘recluse’, not wanting to go out, ‘hating’ people and developed a real phobia of people in general.

I started getting frequent tonsillitis. I would get rid of one episode and within a week I’d get it again. Mostly, it was so severe I could hardly drink! I was getting recurrent conjunctivitis too, again every other week!

Having reached ‘desperation point’, I had a tonsillectomy and had bariatric surgery TWICE – the first time I had a ‘lap-band’ placed around my stomach (known as gastric banding), the second time a gastric bypass.

With the first procedure, I lost all of my excess weight but then piled it on (on eating healthy food!).  The gastric bypass was a failure. I lost a little of my excess weight but could never go below 86 kilos. I was plagued with plantar fasciitis too at my heaviest weight.

Throughout all this I was a single mother, suffering from sciatica and extremely bad back pain. I could not even dress myself.  My son, who was 3 years old, had to dress me and wash me!

I then hit financial difficulties and had to increase my hours at work. I had to start working 6 days a week.

Around the same time, I became severely fatigued.  My body felt as it was full of lead! I could hardly walk. My mind was getting slower and I was scared I would make mistakes at work as my memory also was declining badly.  Of course, I was blaming my tiredness on working 6 days a week although it was a desk job.

I never suffered from the cold but I started feeling FROZEN inside my own house with the central heating on.  There would be a temperature of 22 degrees but I was still freezing! I had, as routine, my electric blanket on 12 months of the year.  Around the house, I was wearing a thermal vest (long-sleeved), a long-sleeved t-shirt, a jumper, trousers, normal socks with thermal socks on top, gloves, scarf and hat and would still be ‘shaking’ from the cold!

Whenever I went for my routine post gastric bypass checks I saw an endocrinologist in the team and I told him about my fatigue and my cold intolerance.  He dismissed it, saying I worked too hard and ‘It’s a cold winter.’ However, I was cold IN THE HOUSE with the heating on, he still dismissed it!

I was found to be vitamin B12 deficient and to have pernicious anaemia .  He said that would help my fatigue, however, the cold was not down to that.

Vitamin B12 supplementation did help my fatigue but I was still way too fatigued. Whenever anyone asked, ‘How are you?’ my typical and only answer was ‘TIRED’ – I sounded like a broken record!

Of course, I was blaming my tiredness on working 6 days a week, although it was a ‘desk job’.  However, if I was not at work I’d sleep 8 hours every night and just sit on my couch the rest of the time as I had NO ENERGY, not even enough to boil some water for dinner!

I regularly checked my thyroid every year as I was aware that feeling cold and tired are some signs of hypothyroidism but my bloods always came back ‘in range’.

Then, finally, in January 2012, on one of the many occasions whilst I was ‘moaning’ to my friends about how cold and tired I was, one of them said, ‘Are you sure it is not your thyroid??’.  I said, ‘I am sure – my bloods are normal’….  However, my friend had put a thought in my head so I started searching the internet for hypothyroidism.

I came across many helpful sites including Thyroid UK and I joined the TUK forum on HealthUnlocked. There were many helpful posts and one of them said about the circadian rhythm and how the TSH is higher early in the morning.

With that ‘tip’ I had my thyroid function tests repeated very early in the morning and this time my TSH came back only just above normal range! I was SO RELIEVED. There ‘may’ be an answer to my problem after all!

With those results and lots of information found through the help of members on the Thyroid UK forum, I went to see my GP who did offer a ‘trial’ of levothyroxine . However, my GP, like many others, has an approach of treating by blood results and being very ‘conservative’ with the trial, she wanted to start me on 25mcg and then keep me on that dose for 12 weeks.

I sought the help of a private doctor recommended by Thyroid UK and with this doctor’s help, I agreed with my GP to start at 50mcg and to raise much more quickly than originally agreed.

However, having arrived at 150mcg of thyroxine I started feeling worse with still some hypothyroid symptoms left.

I went to see another private doctor on TUK list and started NDT (natural desiccated thyroid hormone).  I improved virtually straight away, although having raised my dosages in the way prescribed by the private doctor and having arrived at a dose of 3.5 grains, I started again getting some negative symptoms and still had some hypothyroid symptoms left.

I had a reverse T3 test which came back high and based on this and my symptoms, we switched to T3 only therapy in May 2012. By the end of August, I was finally relieved of all my hypothyroid symptoms.

Then, once I was stable, I went to see my GP to see if I could get my T3 prescribed on the NHS.  The answer was ‘no’ immediately. The GP would not follow the recommendations of the private doctor. He was, though, willing to refer me to an NHS endocrinologist.

I asked around of other TUK members for recommendations on an NHS endo and when I found one who sounded like might be able to help me, I asked the GP to refer me to him.

I am now under the care of an NHS endocrinologist and he has asked my GP to prescribe my T3.  He has asked exactly the same as my private doctor but this time the GP was happy to prescribe it!  I now receive my T3 on the NHS, the whole 160mcg of it.

It has been a long battle but it was worth it. It was very frustrating for a while, especially with the GP not wanting to follow my private doctor’s recommendations yet she was happy to follow them once an NHS endocrinologist told her to (exactly the same recommendations!).

I surely would not have been able to do it all alone.  TUK was the prime factor.  Without TUK and the help of its members, I would not have got there as quickly or maybe not at all.

I now NEVER use my electric blanket in bed.  For the first time in years, I have hardly ever felt cold this winter, only on a couple of occasions but this was ‘outside’ in the ice and snow and temperatures of ‘sub-zero’!

I used to open my bowels 3 times a week and now it is every day, my dry skin has virtually all gone, my memory has improved and my dexterity is so much better.

I notice this, especially on the violin. I have been learning to play the violin for 4 years and I always ‘struggled’ to do things and remember them but now, like ‘magic’, I have improved significantly and can do things on the instrument I could not do before – my fingers do what they are told now!

I must emphasise that it has to be an ‘all-around approach’ as I only got better by looking at ‘everything’ my body needed.  I found I was vitamin B12 deficient and vitamin D deficient and had to fix that too or my thyroid also would have never been ‘fixed’

It is important to look at the ‘whole’ picture.

Thank you, Thyroid UK, for helping us thyroid sufferers and helping in raising awareness.