After PM in with a very helpful Forumite, she has given me the idea of splitting my dose. One part in the morning and one part later in the day. I think this is worth pursuing for two reasons.
1.) My night time heart racing is a blooming nuisance if nothing else.
2.) I am getting the sense that my Levo might not be covering the 24 hours.
All this is because I still can’t get T3, even although endo agreed I do but would not prescribe.
Artistapple - was the endo who you saw a private one?
And, whether s/he was or wasn’t, would you be open to asking for a second opinion?
Well HowNowWhatNow that is a thorny one. I have been refused by three endos to treat me.
1.) a well known eminent who refused to even see me.
2.) a private endo who wet herself when response to T3 was heart racing and stopped treating me.
3.) a lovely NHS endo who was very happily discussing strategy when I was with him but succumbed to the cardio report and decided no treatment but he would reconsider when heart issues were sorted. This one I was so disappointed in. He has been involved in heart/thyroid issues. Wrote a great paper but in the end did not have the courage of his conviction (IMO) to go ahead and treat me. Still very much thinking about this one.
I still have your recommendation tucked away but three refusals now???
Fourth’s a charm!
When I was in hospital with presumed heart problems, doctors there (general / cardio) refused to even consider that my thyroid / iron deficiency and anaemia might somehow be related. Even though both can be implicated in heart problems. They were all looking for a physical (structural) cause instead.
It’s very strange that your doctors are opting to wash their hands of you completely. Knowing that your problems won’t go away if they do. As if there is a hierarchy of problems and thyroid is at the bottom.
Am really sorry.
My person is very good at listening to patients. I can give you their email too, if you haven’t go it.
I don’t disagree with you at all. This is a minefield of pretend ethics and professional hierarchies. It’s got bu..er all to do with the patient. The patient could not be moved further from the process if anybody put in any more effort.
There is a hell of a difference between symptoms and ‘structure’. We deal with this functionality all the time as hypo patients.
It’s utterly frustrating that there is no place (it seems to me) for hypothyroidism to be treated effectively within the NHS.
I yet may be taking up with your offer.
I am just all used up at the moment.
We hypothyroid patients have been unfashionable for decades, and so we can be treated like malingerers forever.
This says more about those in medical colleges and conferences than about any of us or our symptoms or our lives.
Am so sorry. These things drain already low reserves of patience and strength.
I guess you might have seen my blog on bed-time dosing?
helvella - Bed-time dosing of levothyroxine
Discussion about taking levothyroxine at bed-time. Several linked references to relevant papers.
helvella.blogspot.com/p/hel...
I think I should update it to make it less focussed on strictly taking levothyroxine at bed-time and more "whenever and however it works for you"!
I really need to check my notes.
I was taking my whole dose at bedtime up until this appointment with the last consultant. This was to help me Intermittently Fast to attempt some weight loss. I messed about with it because I was pretty sure he would organise a blood test on the day. My T4 was already running high and would have been even higher. With hindsight I should maybe have taken it as it would have given a better idea of just how high it was running and how comparatively low my T3 was.
So after seeing him and he talked so confidently about my treatment (lowering Levo and introducing T3) I (smartly not) thought, I will start lowering it now so it’s not such a big drop when I get the prescription. Of course no prescription arrived after prompting for five weeks. Finally decision not to treat.
Anyway now I am getting the racing heart every night and I have messed up my Levo intake.
Got it back up to 81.25 mcg but in the morning.
I don’t think I could tell any difference taking it at night but it did discipline me re: food and I did lose some weight.
However I think I really need to check my notes carefully and give it a bit of thought.
I remember when I was initially diagnosed, I met the first person I ever knew had hypothyroidism and she said she could tell quite quickly if she had forgotten to take her dose that day. I know it’s not supposed to happen but ….
Thanks it will take me ages to go through these notes.
It is quite some time since I did miss my bed-time dose but, the last couple of times I went to bed without taking it, I found that I either couldn't fall asleep, or woke up after a short while (less than an hour). So went and took it - ending up just being a little late.
But the point is, I noticed!
As always, we are all different. 
I was surprised I did not notice too much reducing the dose in prep for the new prescription - at least nothing drastic. Indeed like many on the Forum who report unexpected wellness, I had it on day four of reducing from 100 mcg to 75 mcg. I literally felt brand new. I had another good day (not as good) on day seven. I was prepared for the wind down. Then things started going seriously downhill. Heart symptoms increasing BUT at last GTN finally working, so that is helpful. Once I had committed to reducing, I was giving it my best - never thinking no prescription would be forthcoming. It’s my own fault really. I should have been much more prepared for rejection and ‘nerves’ from the endo.
Still need to study my notes though.
Worth a try if you haven't before but not sure what you mean about "2.) I am getting the sense that my Levo might not be covering the 24 hours" it has such a long half life and takes weeks for levels to change?.... at the end of the day I think you are just going to have to add in a tiny bit of T3 and show these hopeless 'Experts' what your heart really needs 😳
Have you still got a stash of T3?
Do all patients agree with this statement about half life? I can feel in myself when I have skipped a dose or two by accident.
Can others here?
Some are more sensitive but could it be the reaction to the pill rather than a fluctuation in hormone levels 🤷♀️
I have tried at least 3 types and had the same feeling with all 3.
Doctors always say this is impossible … but then doctors also told me to reduce my levo dosage during pregnancy. They don’t know everything .. yet.
FT4 does clearly rise and fall after taking tablets. I certainly have felt at times that my dose has not lasted the day.
Specifically:
I felt I noticed an effect shortly after taking Mercury Pharma but got the "I'm running out" feel before my next dose.
And Accord had less effect shortly after taking it, and also less of the "I'm running out" feel.
And Aristo Vencamil seems better still - to me.
It is the stability of the levels that takes so long to occur. When we change dose the actual peak FT4 is likely to be different to the day before, and it will take weeks before you could test every day and see pretty much exactly the same level. But it starts to change with that first change of dose.
However, I do think that we might find some of us notice changes almost immediately, and others don't - and everywhere in-between!
Hmm... so the two that you notice this with contain lactose (along with a few other excipients) and Vencamil not, could that not mean it could be a reaction to these as much as hormone level fluctuations?
I consume lactose in many forms. Yes - there could be a levothyroxine/lactose interaction (which I believe is very likely an issue in general).
I have previously used Aliud and L-Thyroxin Henning - and was fine with both. Again, both are lactose-free.
Nevertheless, I do think that Mercury Pharma and Accord are different to each other. I had some disappointment at having to Yellow Card Accord. That was why I requested to change to Aristo Vencamil.
The waking with heart stuff is about 20 hours, here or there, after Levo. It may be it depends on how much I am doing too. Maybe using it up more quickly some days than others? However I am aware that it’s supposed to be hanging around in the blood a lot longer!
My conversion is so very bad now, it’s continuously dropped since very early on in treatment. I have not got in front of me but T3 is only about 8% if I recall, might be less.
I do have a stash of T3. Just attempting to wring the last possible idea out of Levo.
Another thing endo wrote in letter. That the levels of both T3 and T4 were ‘normal’ for a patient on Levo monotherapy. As blood test was at 12 noon off course my TSH looked blooming marvellous at 0.83. My Medichecks blood test was TSH 5.19 - this was after reducing in preparation for T3 prescription, dummie that I am.
What annoys me is he was the lead on a paper Canadian Tanya put on her website, widely dicussing heart/thyroid issues and High T4 Low T3.
I hoped for better from him. However I think cardio is higher in the pecking order, even if it’s obvious to me (and maybe him) it’s the hypothyroidism at the root of the cardio problem.
HowNowWhatNow has experienced similar. I will be replying to her too.
Eric Berg reckons that you need levels of a number of vitamins and minerals to be good to convert T4 to T3. In this video here he’s talking about non-hypothyroid folk m.youtube.com/watch?v=g8Sum... so you can ignore the iodine suggestion (you’ll get that in your levothyroxine anyway) but it might be worth ensuring you have optimal levels of everything mentioned in that right hand column in the graphic?
Why splitting dose before blood test?
t3 splitting doses, timings and food question?
Starting dose of levo
Dose change
