Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily. I am awaiting a stem cell transplant. I was due to go in today to begin conditioning but there is still a trace of fungus in one lung and my consultant doesn't want to risk it, so has been postponed for a few weeks.
Right that's the background!
Last week I did a GP-ordered routine TSH test. The result came back 0.24 (0.34 - 5.6). The path lab describes it as "borderline, speak to the patient". So I got a message from the GP saying that I am probably over-medicated (I have been on 100mcg for around 7-8 years) and that I need a reduction in my levothyroxine. I would like to add that when I have had my TFT done privately my FT4 has historically always been at the upper end of the scale with a middle to lower end for T3. My conversion abilities are apparently sluggish!
Has anyone had experience with this? I take my Levo as far away as possible from other drugs, many of which require an empty stomach so I take it when I go to bed around midnight. Should I let the GP drop my dose or tell them it's probably wonky because of all the drugs I'm taking and that I've got blood cancer? I don't have diarrhoea or tremors or severe anxiety associated with being "over". My clinical nurse specialist tried ordering a FT3 test but I think the lab have declined it (of course, she's not an endo!)
Sorry this is so rambling, trying to get my head around it and what to say to GP on Tuesday phone call.
Written by
spongecat
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High Ft4 will result in low TSH ……even if Ft3 is far too low
For good conversion of Ft4 to Ft3 we need OPTIMAL vitamin levels
What vitamin supplements are you taking
also as you have Hashimoto’s are you on gluten free and/or dairy free diet
Do you always get same brand levothyroxine at each prescription
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and/or low Ft3
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
I have my D3 tested twice a year and it's currently OK. I do supplement D3/K2 and dose appropriately, especially since I'm not allowed to do sun baths at the moment.
My local pharmacy (I live in a small town) sometimes changes brands which is annoying but to be honest I don't notice any difference.
I've been cleared to take D3 but other supplements/vitamins such as selenium and folate may be problematic with my drug regimen. It's hard enough at the moment trying to sort out which side-effect belongs to which drug but I'm doing my best to get on top of it and report anomalies!
I tried gluten-free for some time but it gave no benefits to me. Not going dairy-free as I need the proteins.
*sigh* I guess I'll have to dig my heels in and tell her that I'm not happy with a reduction and that I'm going to get a private blood test done to get a better picture. I've used Blue Horizon many times.
If anyone else has had chemo, did it do things to their levels that they know of?
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