It was that scary time of the year for me. I had to see my NHS endocrinologist to have a chat about keeping me on T3.
One thing that does not help when you have hashimotos disease is stress and to say that this meeting is not stressful would be a huge lie.
I was on time and armed with blood test results that I was really proud off as you have to ensure you manipulate the tests to get the results that the Drs want and not necessarily the results that give you the greatest health benefits.
The greeting from him was
‘The last but not the least!’,
so being a people pleaser I immediately apologised for keeping him back from his more important work and thankfully he saw the funny side and responded that he was happy I was on time.
Not sure how the initial impression had now gone I was ready for the battle to commence as he had never met me before and the NHS are doing a lot to try to cut T3 usage due to cost. Was he a good endochrinologist or a bad one, I was still guessing here.
I felt it went from bad to worse when he asked why my last annual appointment was nearly 2 years ago and I explained the the hospital had forgotten to put me on their list and then cancelled the next 3 appointments, hardly my fault.
Compromise time as he asked about my current medication level which is
T4 25mcg a day – I only take it near blood test time to boost T4 readings
T3 50mcg a day split into 3 doses. I could see the brain tick over the cost of this to the NHS.
Then the tricky question which I love and that is ‘how are you doing?’
That showed me he had learned from a great endochrinologist, one who knows that blood tests are not the whole story. It was time for a quick recap of battling for a correct diagnosis as GP only looked at blood tests, then getting onto T4 but gradually being poisoned by it and being told that ‘it was all in my head’. Being so ill and on crutches and unable to leave the house to do basic things like shopping. Requesting a second opinion at another hospital before being treated as a human being and allowed T3. How after 5 years I tried a full time job which did not work out and now my life was full with 3 part time jobs and a social life.
It still felt bad and my stress levels were rising, he seemed to have acknowledged my story but the punch came.
‘Your blood tests are out of date’, through no fault on my side as an appointment came close I had blood tests done, only for the appointment to be cancelled.
I used to be in the Girl Guides, perhaps as a youngster I should have been in the Scouts as I was more a tomboy. Well the scouts motto is Be Prepared, so like a lion ready to hunt I leapt to my defence with recent blood test results, that had worried my GP, showing
TSH <0.10mu/L which throws any GP into a flurry of panic
T3 free 5.4pmol/L – mid to top of the range
T4 free 5.7pml/L – below range but at least showing something to keep them happy.
He decided to test my reflexes and noticed I was a bit hot and sweaty, is that normal he asked. ‘No it’s just because I have walked up a big hill to get here and had to rush as the trains were a bit late. And of course these meetings are stressful too!’ Didn’t want him sending me off for more tests.
‘How about your B12 injections are they every 12 weeks?’
I felt on safer ground here as if I need a top up on these then it’s affordable.
‘I’m lucky in that I get them every 9 weeks but by the start of week 8 I am able to notice the symptoms of brain fog, dry skin, breaking nails, brittle hair, weakness, vision problems, a change in the way my feet work’
The reply ‘and that affects your T3 uptake too’
I felt as though I was on home ground, not only had he learned from a master there was even further learning going on. Stuff I knew to be true from my own journey and it was now being accepted as medical knowledge having been backed up by tests. Does this mean I may get my injections more often, well I will wait and see what his letter says to my GP.
He asked what other steps I was taking and we chatted about gluten free food for a while and that I had been checked for Celiac but had a negative result. I explained my diet as choosing gluten free at home not only because of the gluten but for the preservatives that is put into mass produced bread. How on holiday abroad I can eat bread without any problem from a local baker yet a supermarket loaf leads to bloating. It had begun to feel like a real conversation and I had to check that I was staying in the parameters of what he wanted to hear as opposed to what I really do to stay healthy.
We chatted about T3 and it not being right for everyone and he agreed that it was right for me as I was no longer housebound and using crutches and was able to live a normal life again.
I knew he appreciated that this illness has many layers so I told him my analogy that Hashimotos/ME was like an onion. When you become unwell it’s best to slowly peel back the layers. It might be headaches or pain, or brain fog or walking with a limp and of course the one we all label incorrectly fatigue.
Having stripped away all that is harming our health it’s time to slowly rebuild from the core of the person out. For me it was diet, then lymphatic drainage massage under the Dr Perrin technique to supporting my adrenal glands through sunlight and meditation and supplements. working on supplements for my brain and pain relief in Vit B12 and D3. Trying the different thyroid medications till I found the right fit. Then its about balancing all those layers to give you that perfect fit. Some times, like now, a bit of stress throws you off and you need to re balance. Its worth the effort. He liked my story and asked if he can share it to other patients to help them understand.
We shook hands as I left and parted with mutual understanding and I hope my onion story will help others understand how these illnesses are multi layered and yet can be peeled back and repaired.