My journey through Graves Disease continues as sadly I have not succeeded in conquering the dreaded illness yet.
I was diagnosed with an overactive thyroid gland in February and have been making regular trips to the consultant and doctor’s surgery for blood tests ever since. There are two hormones involved and one was at three times the level it should be while the other was twice the normal level.
At that stage the consultant reckoned I had been battling this condition for 8 months unbeknown to me. I lost nearly 2 stones in weight and developed a tremor that affected my everyday life from cooking and eating food to writing and typing, not good for a journalist.
I have been taking medication to try to control the levels, but the disease is notoriously difficult resolve. I have blogged my experiences so that they might just be able to help someone else who is similarly struggling.
To read my latest step on this long road click on the icon or read more below. Photograph Liz Henson Photography
My last blog in September was upbeat, I was feeling positive and pleased that the consultant had reduced my medication. However, my interim blood tests in October showed that, rather than keeping on decreasing, my levels of free T3 and free T4 had both risen and by quite a lot. A phone call to the consultant led to my medication being increased again.
In early November I won a business award, I shared the Sole trader category with my photographer friend Liz Hall of Liz Henson Photography and I was understandably feeling good, the increased medication also served its purpose when further blood tests taken the following week showed that for the first time since I jumped on the thyroid roundabout both hormones were indeed normal, albeit one was just on the cusp. However the TSH thyroid stimulating hormone that is produced by the pituitary gland to control those two was still non-existent.
My appointment was on November 29 and I have to admit I was confident. I had such good news to tell the consultant I was almost happy to be visiting the hospital. Surely I was cracking this, wasn’t I? So sure was I, I never even thought to write down the side effects and issues, that to be honest were still blighting quite a bit of my life. I did still have a problem with itchy joints as the scabs on my hands clearly showed. I still too have daily headaches and I must admit that some days I have found that my hands were beginning to tremor again, so I slotted in an extra beta blocker on the days when I was not normally due to take them.
However, the consultant was not as pleased as I. He didn’t lower the medication, he increased it by another quarter, now I take two tablets of PTU in a morning and another two in the evening. These horrible little pills taste vile, as I have blogged before, but if they solve the problem then you keep taking the medication.
I am no stranger to reading between the lines, I am a journalist at the end of the day and am not supposed to be easily taken in and I know where the consultation was heading. The gist was how much longer are you going to keep trying to control this by taking medication and when are you going to admit something more radical is required radioactive iodine RAI or a total thyroidectomy TT.
When I left, clutching not one but two plastic bags authorising blood tests, one at four weeks and another at seven, my head hung low. I walked up the road to my car thoroughly deflated, pissed off to be honest.
I wanted to scream, I wanted to cry, so I chose the latter.
On my way back from the hospital I called into the health centre and booked those blood tests with the first being on December 30, Happy New Year!
I was informed that I must call the consultant as soon as I get those results back and unless the levels are a lot lower and there is an indication that the TSH is returning then it will be decision time.
When I arrived back in Weir, instead of going home I called in on my good friend Janet, who is a wonderful leveller, a good listener and has had more operations than probably everyone on her street put together! It was Janet I turned to the last time and once again her realistic and succinct summation of the situation was a breath of fresh air.
At present my return to clinic is planned for eight weeks. However, depending on those results in the New Year and on the availability of appointments, that could be sooner.
For my fiftieth my sister-in-law gave me a scarf, not a winter one but an everyday one and I know why. I texted a thank you. At that stage I thought I may never need it; now I think I might be looking to purchase a few more.
I have seen many people since with thyroid scars, some more noticeable than others. It is funny how something you never used to notice before now you spot all the time. There are no folds in my neck to hide any incision so I guess I shall just have to embrace any scar, however I will not be defeated.
I shan’t be writing another blog now until I get my results early in the New Year. As I posted on Facebook positivity helps however it must be matched with at least an equal dose of reality.