Hi all, I don't really expect an answer but I have endo follow up tomorrow at the QE and I wondered if you could give me your views on my blood results from last week please? I know she won't endorse an increase in either my levo 75mcg or lio 10mcg per day as she said so last October when my private fingertip blood test was similar. She likes tsh 0.1 or above because of the risk of bone damage or cardiac risk, even if ok now "we do not want to risk this happening in the future". Obviously I don't either but my FT3 and FT4 are still below half way. I do feel much better than 12 months ago but not optimal. I will ask for a dexa scan as a baseline too for my records. I know I won't change her mind but I would appreciate your thoughts please? I want to keep my T3 on nhs if possible but feel she will stop itif I start self medicating. Isn't it dreadful that we have to fight so hard for our health?
FT3 4.1 (3.1-6.8) 27.03%
FT4 14.5 (11.0-22.0) 31.82%
Tsh 0.07 (0.3-4.2) -5.9%
I do supplement D3/vit k and magnesium, all routine bloods ok last Nov except cholesterol a little raised at 5.3.
Thank you for reading this far x
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Thanks for replying, I know but can't seem to get an answer as to why, I'm certainly not borderline hyper, been there years ago. I'm definitely more symptomatic of hypo, will have to see what she says tomorrow and report back.
I read a very interesting article about the effects of covid on TSH T3 and T4 today ( essentially all reduced at the same time) and wondered if this is relevant to people like you who do not seem to have a rise in TSH appropriate to their level of thyroid hormones.
Also seems to be a transient response to the vaccine…
Thank you, no, not had covid or vaccine for a couple of years now so shouldn't be that. Oh well, I'll ask her again tomorrow, I know she dislikes being questioned but tough. I am tired of being told that's it then review 6 months, it's a long time if you don't feel right, I'm getting no younger x
Thank you SD, my tsh has been 0.01 the previous 2 tests. I did ask about adding in and extra 5mcg T3 and got the response that she will not endorse any increase. In Nov, vit D 126, was taking 2,000 day but now increased over winter. Folate 6.7 (3.0-20.0). Ferritin 193 (28-200) has previously been higher, haemachromatosis excluded. B12 502 (180-640). So generally all seems ok there except maybe folate lower end of range.
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Thanks again, no, not taking any B vitamins at the moment, I didn't as B12 already well up in range and always has been. I tried the Thornes a year or so ago but as the colour of my urine to bright yellow I stopped them. As I understand that's excreting surplus so assumed I already had enough.I'm beginning to think I need to change endo but she's nhs so I get T3 on prescription. Was private prior to her but though he was on Thyroid UK list and recommended I thought he was charging a lot of money for less than 10 minutes on zoom. Typically ended with bloods 4 weeks and review in 6 weeks, a bit too soon to recheck bloods I thought. I'll see how tomorrow goes and ask again for increase.
Oh thank you again for your support. I'll restart the B complex then. I hope the endo will listen tomorrow but somehow I doubt it 🙏. I'll let you know how it goes.
That's what I've read on here hence my post. I think I just wanted reassuring about what I had learnt. I'll put it to her and put my brolly up for the response x
Thank you serenfach, just back and as expected she will not endorse an increase in anything. In fact she said she should reduce my dose, I said no chance at all, I felt like I was dying on lower dose.She wouldn't have it at all, says there's loads of research about low tsh causing heart and bone problems plus dementia and I must be looking in the wrong places. Trust me I've looked and as a retired nurse I was looking everywhere for some decent research. I have managed to get a referral for dexa scan but she says they'll probably refuse and there's a long wait.
Just an update as I said I would. As expected it was a futile appointment, she was adamant that she would not endorse any increase in my meds. Said if anything I am overtreated, (I've been hyper and I'm definitely not) and she should reduce my dose, I said no way will I do that, I was so unwell previously. Apparently my 75mcg levo and 10mcg lio is equal to 150mcg of levo which is too much! She added that many ask for an increase in their dose, doesn't that say something then I replied?
I really tried but no way was she moving, student in with her too so not much chance for the future is there?, She even said if I was seeing another consultant there I wouldn't get any T3 as he doesn't prescribe or believe in it. I just replied I would refuse to see him then.
I then got the suppressed tsh causes bone, heart and dementia problems in the future talk. When I said I can't find evidence and research to back this she said I must be looking in the wrong places, trust me as a retired nurse I can usually find any studies but heho.
Then I asked why is my T3 and T4 in the lower half of the range and why do many feel they are optimal if above half way, reply was, it's in range 😫.
Mentioned weight gain, difficult to lose any and I got you're only a couple of pounds over 18months ago. I know but I was begging for T3 then as on levo only, a stone over my normal weight is a lot when you're only 5ft and a fag end.
The only good point was that the hospital are changing back to tablets from the capsules, not that she knew what is being dispensed at the moment, apparently the tablets are now cheaper than the capsules, I'm currently on Roma. Great isn't it that we only deserve the cheapest medication, wonder if diabetic patients get the cheapest insulin regardless of it's efficacy? Still tablets may be better so I shouldn't moan.
Well if you've got this far and still awake, thank you for reading my rant.
It may just help future patients, but I doubt it as she seems to not be able to think. My mother told me that when ice cream vans play a tune, it means they are out of ice cream. I believed her for years. Just because you were taught something, it does not make it true.
You fought your corner well, so reward yourself with something nice. Stuff her!
Thank you but believe it or not she actually quoted "do no harm " to me when saying she will not endorse any increase and looked across at the trainee she had with her in the room. The more I think on it the more I shake my head in disbelief at their misguided superiority. So the choice is mine now I guess. Self medicate and try to be optimal but I'm scared if it goes pear shaped I might struggle to get back to where I am now. Also she says she will stop treating me if I do but she doesn't have to know. Go private or carry on as I am. 🤷♀️
We shouldn't have to make these choices but the lack of consistent care makes us have to .
I'll have a read of the research tomorrow, thanks again x
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