Sorty this is a long post but feel at a bit of a crossroads. Can I take you back to my early thyroid days in the mid 1980’s. My husband was fed up with our daily arguments with temperature-I was always cold he wasn’t! My now late husband was a science based endocrinologist so basically he lectured, did research on the thyroid similar to Diogenes. So a greater understanding what it was all about. Surgery wouldn’t offer a diagnosis as I was apparently in range but I never saw any readings. Eventually I got to see the senior partner who had just been diagnosed himself and was big enough to admit he wasn’t as clued up as he should have been despite training at a top University as he had also forgotten so much as never had to treat anyone. So he asked me to come along and bring my husband with me! The discussion went on for so long and well above my head that I finally reminded them that I was the patient! So more bloods were taken and the suggestion that I made a further appointment when they came back. It was decided we should both take NDT but I was asked to wait another few weeks as my GP wanted to start first and test it out and in a few weeks I was given one grain on the NHS with medication from Canada. I never looked back, I was never tested as the body only takes what it needs but eventually I felt I was beginning to struggle so was given another grain. Must have taken it for several years with no further issues but then a strike in Canada upset the applecart and eventually I asked to go on T4 as by now I had three children and needed to feel well.
So onto Levo and to be fair I was good on it but I put that down to my excellent doctor. Sadly he left the surgery so I was now with doctors who hadn’t a clue and also nervous about what to give me which wasn’t enough! Think many of us have been there! Where I was living was also a bad place to be thyroid wise so I asked for a referral to another town which research had said would be open to T3. Well I was impressed at first as every test I could think of was done but I never saw any results but I was being managed better and felt a slight improvement. Then I heard the top man I was seeing was retiring so I thought it’s now of never so asked about T3. Really wanted NDT but that didn’t seem to be on the radar. I was told that as my T3 was now just under halfway then there was no reason to suppose that the improvement wouldn’t continue so I accepted that on the surface. I did start digging around and found the replacement was from a country I knew would be familiar with NDT so I decided in the mean time, as I knew when my appointment was to start taking NDT as I already had experience but hoping I would have had it sorted by the time for my next bloods at my first appointment. By the time that came round I’d realised I was taking too much but no palpitations just the realisation that I’d stopped feeling an improvement.
So I had my first ever T3 test and it was far too high but no shouting or telling me I shouldn’t be doing this but just telling me to drop down to 1.75 from the 3 grains I had reached. I thought it a huge drop but accepted it as I was now being monitored in NDT-what more could I have asked for and it turned out the 1.75 was spot on!
Sadly he was only there for a year and appointments weren’t really needed as I was stable and knew and understood what I was doing! His first replacement liked me to be in the ranges and seemed to know or accept that my TSH would be suppressed. The present one is trying to get my TSH in the range-never going to happen and we argued over it, she kept trying to tell me what I should be doing and I said no each time but wouldn’t listen till she finally said what was the point of me coming if I wasn’t going to change things. So I said with all due respect if she had let me reply etc. So she listened and then told me I knew what I talking about and felt confident in what I was dong! But we need to get that TSH in the range plus that was on the report going to my GP who thankfully trusts my judgement. So lets see what my Christmas week appointment shows! But this lead me onto another point which I’m not sure to bring up at all. The fact that on NDT I don’t really need testing and wondering if I dare say I will take 2 grains as easier to sort and see what happens. She managed to wheedle out of me that I buy on the internet though didn’t ask from where but I suppose I’m not a burden cost wise other than bloods but if it works would be happy once I know that from a yearly test.
The other thing though it got me thinking about was this range I should be on and how have they decided what it should be? No one was actually tested in the past but were they unknowingly but surely it would have to be done on the potency in the medication so would welcome any thought on that. I’m already hearing I should fit into the Levo ranges, but that doesn’t fit in with suppressed TSH and high FT3. I do feel well but it could be my body actually wants a bit more from what I am taking if my dose is under that amount so I’m stopping it going any higher. I’m now taking Thyroid S and readings in the right place but not taking the same dose daily which is also frowned upon but in theory I feel I should raise the lower day by a quarter so I am giving my body to take what it wants equally. May be after my next appointment I should try different things and test myself and make a decision from that. So lots of thinks going round my head but cautious as I don’t want to be excluded from what I’m getting at the moment and find I’m struggling.
Sorry this has been so long but not easy to shorten too much but thank you for listening.
Any Ideas on my thyroid meds?
My Hypothyroid Journey
Update on my T3 journey
Is it my thyroid or something else?
My Medicheck thyroid test results
