I started taking NDT last month and have feeling so much better, I feel like pinching myself every morning! Energy levels improved dramatically, sleep length back to normal, exercise tolerance gradually improving, no more 2 hour afternoon naps needed, acne disappeared for the first time in many years, dry skin on body rapidly disappearing, less bloated, basal temperature increased a touch (but still low at 35.8), sweating a tiny bit when exercising, light headedness gone, libido returning, muscle cramps gone, and mood much improved too.
I told my GP I’d started taking NDT and was feeling much better, she said will repeat various blood tests in 2 months’ time. Recently abnormal blood tests are very high LDL, high creatinine, protein in urine and somewhat raised MCV/macrocytosis – from my research, mostly on this website and also on Pubmed, all of these could be due to low thyroid issues. My haemoglobin and RBC are within range but historically low for me. The high creatinine and protein in urine got me a diagnosis of CKD 5 years ago but no cause has ever been found. A scan showed my kidneys are smaller than usual (but I’m small and petite anyway, 5ft 2ins tall, weight 7st 2lbs).
I’ve been eating LCHF for over a year, gluten free most of the time, and moderate carb for several years before that. I’m a big fan of Malcolm Kendrick’s work, so I’m not unduly concerned about the LDL, although of course my GP is. My LDL more than has doubled since last tested 5 years ago, it's 8.6mmol/l, was 3.2mmol/l. Could well be because of my change to LCHF last year or my thyroid, so it will be interesting to see what my repeat bloods show in September.
One of my symptoms that hasn’t changed yet (and I didn’t realistically expect it to yet) is my palpitations/ectopic beats. They were first picked up by a nurse who noted them on my file about 5 years ago, but nothing was mentioned to me at the time. This was at the same time as my diagnosis of CKD. A 24 hour ECG recently showed I’m having an awful lot of ectopics so my GP wrote to cardiology, who replied this week saying I should start on a beta blocker.
My pulse when I was pretty fit aerobically about 7 years ago (and jogged for an hour 3 times a week) was around 74, now it’s down to around 55-59bpm. I’m 60 now, and do still exercise regularly when I’ve had the energy, which has been a lot less in recent months. I now do mainly strength training because that is intermittent and so can include plenty of recovery/rest time. But when it comes to jogging I can now only jog for about one minute before I have to stop, I just seem to run out of steam.
I’ve already decided to say no to beta blockers at this stage, I’d like to give it time to see if the palpitations resolve with the NDT. Any advice or similar experiences please? I appreciate we’re all different, but I wondered how long it took others for their palpitations to stop once they started their thyroid medication, if they did stop? I’m currently taking 1.5 grains of Thiroid, split over 0.5 grains 3 times per day.
I hope this post wasn’t too long, and a massive thank you to everyone who takes so much of their time to reply to everyone’s questions and for all the advice on this website. I definitely wouldn’t have had the courage to get this far without it - I'd still be camped out on the sofa for most of the day instead!
Lesley
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Lesleyg13
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Lesley. I am not an ‘expert’ but totally support your decision to wait until the beneficial effects of NDT have had a chance to reduce your heart symptoms. Mine much improved after I became properly medicated.
Lesley. My 'heart' symptoms were very low pulse, dizzy spells/fainting. The cardiologist couldn't find anything serious wrong, after lots of tests, but recommended I had an internal monitor inserted in my chest "to give him more information". I declined this in favour of starting T3/T4 combination. Within days I felt better and keeping careful checks on my pulse rate and temperature realised that this medication was all I needed to avoid anymore fainting spells. My husband (also hypo) was checked by a cardiologist in relation to his 'ectopic heartbeats'. No other abnormality was found and he feels well on his regimen of T3/T4. We have since learned that 'ectopics' are quite common.
Gosh, you've had a double whammy then with both of you being hypo. Thank goodness you had the strength to say no to the internal monitor, well done you! Not easy standing up to health professionals - I'll try and take strength from your experiences as I'm sure I'll have to do similar.
I have had the light headedness for a several years, but that has gone for now since starting the NDT. I'm hoping that means I've had some increase in blood volume which I understand can be reduced when we're hypo, but increases when medicated.
Having now read a little on beta blockers I can't see how they would be suitable for me. My current pulse is low (55 to 59), my blood pressure is low (around 100/60, sometimes lower), although they may of course still increase with the thryoid meds. The main effect of beta blockers seems to be to lower pulse and blood pressure. I can't imagine feeling or doing well with figures lower than those.
Absolutely! Beta blockers are the last thing a hypo needs! My husband’s cardiologist suggested those for him. I am shocked at the ignorance medics have for fields outside their own... they seem happy to treat bits of us and don’t realize the body is a whole system.
I agree completely about most medics not joining the dots, they only see what's included in their specialty. I am hopeful that functional/integrative medicine be widely available in the UK one day, although whether it happens in my lifetime I wouldn't like to bet. From what I read, the younger generation of doctors are showing more interest in lifestyle medicine (? thanks to what they learn from the internet rather than traditional training) and courses are starting to appear on a small scale. When I discuss examples of ignorance in the medical profession with friends and family I honestly don't think they believe me. I used to blindly trust what health professionals told me, but certainly not now. I'm not saying that I never believe them, I just do my own research afterwards to confirm or disprove. Very time consuming isn't it, but the safest way is to be your own health advocate if you possibly can.
I went through a similar fight over my husband's B12 levels. He was having lots of B12 deficiency symptoms. When tested he was right at the bottom of the range, but still just within range, so was refused treatment (where have we heard that before?!). I kept fighting and eventually we saw an excellent locum GP who thankfully had just done a haemotology course and got treatment authorised by a consultant. As it happens the NHS won't give the injections often enough for his needs so I have to buy them from Germany and inject him myself anyway!
When I introduced T3 to levo. I got palpitations. I started on tiny amount of T3, 1/8 th 25 mcg T3 pill, and not till a month later when got up to the full 25 mcg pill did they disappear...think it was a jolt to the system, particularly the heart, that it actually had something to work with and had been undermedicated for years. Your NDT obviously has fixed amounts of T4/T3 etc so it’s less easy to juggle proportions, but if you’ve just been on levo before perhaps your body is now behaving similarly to mine. Be patient.
Hi judith, thanks for that. My palpitations were a symptom before taking any medication at all, and I found they are included on thyroid UK list as a hypo symptom.
I went straight to NDT, never had levo. Lovely GP did admit in the past she would have been able to offer me levo, based on symptoms and bloods, but not possible under current guidelines. Another lovely locum GP also tried to get me T3 as he thought maybe a conversion problem, but endo refused. As I'm below range on my FT3 it made more sense to try NDT rather than levo anyway. With 1.5 grains of Thiroid I'm taking I will now be on about 12mcg of T3. So hopefully you are right and my heart just needs longer to adjust.
Will get repeat medichecks levels done in September and see if I should increase dose then.
Sorry if misunderstood you, but I associate palpitations with being hypo, having low FT3...isn’t it getting more and more frustrating when even cheap levothyroxin can’t be given to someone who might benefit if only technically on trial, rather than life long. So your T3 in current dosing it equivalent of 1/2 of one of my T3 pills...quite high to start T3 unless you added NDT very slowly in preceding weeks. But if you are used to palpitations anyway then I presume and hope they might go as T3 /FT3 proportionately raised. If you get the right dose to aid hypo then your cholesterol should also return to normal. If you are buying NDt privately then you could also get levo.privately, which from my experience is so much easier to use, and test with bloods, if you are not sure about NDT dosing.
Yes I associated my palpitations with being hypo/low FT3 too (thanks to the thyroid uk website's symptom list). I increased the dose slowly as recommended on here, starting with 1/4 grain twice a day for a week, then 1/2 grain twice a day for 3 weeks. Then a couple of days ago I increased to 1/2 grain 3 times per day, so total 1.5 grains per day. I leaned towards trying NDT rather than levo due to possibly having a conversion problem.
Yes it's been really shocking reading on here how hard it is for people to get adequate treatment, which made me realise quite quickly I was going to have to self treat. However I think the majority of people I know wouldn't have the confidence to go it alone. Goodness knows how many people are out there suffering from insufficient or non existent treatment, it's ridiculous and very sad at the same time isn't it.
It's also because of the T3 content in NDT that I decided to split my dose over 3 times a day instead of 2 when I increased this week to 1.5 grains. Especially initially it seems to make sense to me that it's a bit more gentle on the body, smaller peaks, although of course it does take a bit more thought and planning to avoid meal times and supplements.
Yes, I tried the split over the day but found it so difficult to take other meds, supplements( especially ferritin), food and drink that I ended up taking it in middle of the night as one dose...flooding the receptors. Still take it then, had the advantage that I slept or was half asleep when I got the palpitations, and they were largely gone by the time I was awake.
I'm not aware of my palpitations all the time, usually it's when I'm sitting quietly on sofa I notice them, when there's no distractions. But whenever I check my pulse at any time of day or night it's always very irregular, so I seem to be having them all the time, and that's been for at least a few years. But my hypo symptoms have been gradually building for years too, as they do eh. If they are connected then hopefully there's a chance they will reduce. I'm certainly not in any rush for the cardiology referral as I'm expecting pressure from them to treat it.
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