My Thyroid Story Part III
Dr UVW, endocrinologist
2013 was probably the worst year of my life – although the jury is still out on that one. It was like my own personal and private 2020. Almost every month, there was a new upsetting event to cope with. In January, I watered my Christmas hyacinth and a cloud of small black flies rose up and invaded my kitchen, which bred rapidly and seemed impossible to kill. They got everywhere, into the cupboards and into my food. The only thing I found to combat them was to sneak up behind them with the vacuum cleaner and hoover them up. In March, a close friend rang me to tell me he had cancer. In June, a rogue plumber virtually destroyed my beautiful kitchen. And in July, I was struck down by a mystery illness that nearly killed me.
I’m convinced it had nothing to do with thyroid, so I won’t go into the details here. But, for those that are interested, you find out more about it here:
healthunlocked.com/thyroidu...
I stuck it out at home until August, firmly believing that my body would win in the end and destroy all the infections that were plaguing me. But, I have to tell it as it was, and say that I was totally and utterly, off my head! Out of my tiny mind and had no real idea of what was going on. It wasn’t just brain-fog, I think I went temporarily insane.
But, in August, I had to admit defeat when I found I was too weak to slice a banana. I just didn’t have the strength.
In hospital, drifting in and out of sanity and sleep, watching the room as it changed size and shape, I had a visit from Dr UVW, who had come to inform me that I had a brain tumour. Given that nobody had examined my head, I asked her how she knew that. “Because your TSH and FT4 are both zero,” she said. I asked her if she’d tested the FT3. “And why would I do that,” she asked. “Because I’m hypo/Hashi’s and taking T3 only,” I said. “Ah,” she said. Not in the least embarrassed by her lack of clinical know-how. “Well, why not. I’m broad-minded,” she said, and asked to see the package. She turned out to be less broad-minded when I told her I bought it on-line. After a lot of tossing the subject around, and her asking questions about what else I might be poisoning my body with that I had bought on-line - “Are you taking iodine or DHEA?” she asked. “No,” I said, “but I’ve taken both in the past…” “Ah ha!” she said. “both prescribed by doctors!” I continued. She burst into hysterical laughter. “Oh, really!” she said. “Well, OK, continue with the T3. But, you should only be taking 62.5 mcg daily.” I shall never know how she arrived at that magical number without testing my FT3, or even asking me how much was actually taking. “I’ll see you next Wednesday,” she said. But, I never saw her again.
Dr XYZ, GP
On leaving hospital, in September, a bundle of bones wrapped up in baggy skin, profoundly deaf from the drugs they’d given me, suffering from mal-nutrition from an ill-adapted hospital diet, with a perforated septum (no idea how that happened) I had to find myself a new GP to prescribe my new medication for my presumed heart arrhythmia that the hospital cardiologists had ‘diagnosed’ me with – although, to my knowledge, that was pure fantasy (like my hospital notes!) because all the tests and cardiograms came back just fine – but, remember, I was still out of my head, and not thinking straight. GPs are like gold dust where I live. They come and they go, but mainly they go, and the only one that was taking on new patients was the man nobody liked: Dr XYZ. Rude, self-opinionated and eye-wateringly ignorant, this man opened his surgery door to me on my first appointment saying “Hello, I’m the doctor.” Well, I didn’t think he was the window cleaner! And, given that there were at least four other doctors in that building, who could have said the same, I found that rather strange. Or, was it some bizarre sort of joke referring to The Doctor, as in Dr Who? We shall never know.
However, apart from his tendency to whisper, even though I’d told him I couldn’t hear, we rubbed along quite well. We even seemed to like each other! Which was really weird. I did have the feeling he was doing his best for me. Which was a feeling I’d never had before. But, December found me back in hospital again. This time with suspected kidney failure. False alarm! It was just the drugs they’d given me that ‘often have that effect’. Well, if they know that, why… Oh, never mind. But, while I was there, they tested my TSH/FT4 again and found a TSH of around 30. Which didn’t surprise me in the least, because, my brain, still being on another planet, had decided that I didn’t really have hypothyroidism. My 2000 diagnosis was a mistake, and it had been the stress and shock of that awful operation that had caused my TSH to be elevated – just like it was now. Easy to understand how these things happen. But, in March 2014, the bag of bones that I was started to put on weight. I asked Dr XYZ to do a thyroid panel:
TSH
FT4
FT3 (not necessary, he said. Why? Because I don’t know how to interpret it.)
Vit D (oh, you’re going to be low in that! you don’t get any sun. no point in testing it. And, apparently, no point in prescribing it, either!)
Vit B12
Folate (we only do that when the patient has anaemia. And, he launched into a long, whispered explanation, which I couldn’t hear, with diagrams that I couldn’t see… I gave up)
Ferritin
Iron (oh, no point! Why? It’s the same thing as ferritin!)
So, I got what I could and the TSH was now 45, and I asked for T3. There followed a long and tedious conversation that I’ve detailed here:
gggreygoose.wordpress.com/2...
If anyone is interested.
I stuck it out for a few more months with Dr XYZ, but if I thought it was bad with the heart condition, his attitude towards thyroid finally lead to…
Showdown time: And, what was the cause of the last straw? Adrenals. Of course. As detailed in the link above. And, I thought, no. I can’t take this anymore. I was so confused when I left that appointment that instead of leaving by the main door, I walked into a broom cupboard. And, that was the last time I saw a doctor.
Self-treating Again
So, here I am, left to my own devises yet again. I have to say I’m still on the same dose as I was when I left Dr XYZ, and it seems to be my dose. As it’s difficult to do private labs in France, from time to time I experiment by raising or lowering the dose slightly, just to see what happens, but I always come back to 75 mcg. That just seems to be right. And, from time to time, I try adding in a little T4, just to be sure. But it’s always a huge relief to stop it again. T4 just doesn’t suit me. So, I’m pretty confident in what I’m doing. I know how my body reacts to various supplements, and when it needs a break, so I supplement things like iron and magnesium, etc. intermittently. And that seems to work. I wouldn’t say I was back to the way I was before all this started, but I think this is as good as it gets. And, in any case, I no-longer know what normal is. So, I’m not complaining.
Thank you for reading my story. And, if it gives just a smidgeon of hope to those in a dark place, then it was worth the effort of writing it.
Be well. Or as well as you can, anyway.
Glad to be of service.
lol
My thyroid has failed according to the endo. So many questions!!!
RESULTS FROM ADDENBROOKES for my daughter 
this is my story it might help someone,this was my symptoms
Confused by thyroid test results
What is going on with my thyroid
