Hi again, I'm starting again as I posted 2 days and got so much help, but got confused about replying... Not sure if replies go to one person or everyone so I'm starting a new one to update... I've also been reading other posts. Please be patient with me as I have felt too overwhelmed to post here before and it is still a lot to get my head around though the brain is less foggy for sure with T3....
So yesterday I switched from dosing my 10mcg on 3 doses before 3pm... to 5 at 8 am and 5 at 8pm. My sleep was no different I couldn't go to sleep and only had 5 hours waking at 5.45 zinging... But thought it might need a few days to settle... I then thought I'd take 2.5mcg instead of 5 at 8am because I may run out of T 3 because trying to get a new prescription without Mannitol and lactose....so thought I could eek it out...
Well I have had a terrible day, weepy and overwhelmed at something minor and then absolutely wiped out, total crash so I took the other 2.5 at lunch.
It is hot and I know that T 3 has put up by body temp and my heart rate and the hotter it is the more they rise... I read a post about someone on T 3 only and increasing their T3 reduced the heart rate all about the body getting it when it needs it.... This is interesting and makes sense but how do you know when and how much? Feels risky to take more when heart pounding.
Anyway I hate the way my heart pounds... It disturbs me especially at night... Feels abnormal... I also have Amour as I was going to move to that because of this heart disturbance... but because NHS endo unexpectedly is prescribing me T3... in theory anyway.... I am still jumping over hurdles to get it... I thought I should try staying in T3... But because I'm running out of T3... I'm going to go onto Amour. Any advice about when to take this? 2.5 tablets.
I have posted all recent results on previous post... Don't know if people can see that.
I have ordered recommended B12 spray and B complex and D3 with K so appreciate this might all help... I feel positive about all of this.
My journey started with diagnosis of ME/CFS and because there are so many possibilities around what may contribute to that condition I had to give up looking for solutions as it was debilitating in itself but now it seems Thyroid is the root cause I can at least focus on this. 🙏
If anyone with ME/CFS diagnosis reads this feel free to Private Message me with any questions if going on big forum too daunting as it was for me for many years.
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Dhalia50
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I've not caught up on your previous post (they get a bit tricky to follow if lots of activity) but I can answer the questions about posting, so if you press the Reply button under someone's response then they will receive notification of a reply, if you would like to include (tag) someone else then if you add @ before typing their name then a drop down list will appear and you click on their name so they will also receive notification
If you want to look back at your previous posts and answers then click on your name to see them 🤗
I have CFS and ME diagnosed in 2005 the problem I found was my gp blamed all my symptoms on it and the menopause 😡 he refused to look elsewhere for my awful debilitating symptoms, turns out I actually had graves disease.
Iost my thyroid in 2019 because of his incompetence, but with this condition it's sometimes hard to distinguish it from say hypothyroidism or hyperthyroidism , although all that was needed in my case was a full thyroid blood panel which my gp never did.
I have what I call flare ups of my cfs/me so pain from that can get confused with hypo, but because my cfs/me came before my graves, I sort of knew the symptoms were different [ try telling any gp that tho😡] I still have palpitations and still sweat eventhough I'm hypo, but I also have primary hyperparathyroidism to🤦♀️ so it's a minefield trying to distinguish which symptoms are which.
Obviously my gp let me down badly , but now I insist on getting everything checked out ..having thyroid and parathyroid bloods done as much as I can, when I can manage to get an appointment 😡 I'm now off all synthetic thyroid medication and started on ndt into my 7th wk, im playing around with dosing trying to find good times in which to take it, i split it 3 times ..morning, afternoon, teatime, and I'm feeling way better gut wise , but as I was so hypo it's going to take time for my levels to get in to a good range I still feel groggy first thing in the morning and find it hard to rise🥱
But we mustn't let the specialist or gp rule with our diagnosis of cfs/me as the root cause of all our symptoms 👍
Sorry to hear about what a long journey you have had. Certainly a minefield and I really hope that the NDT helps. Thanks for all the information. It helps to know that it seems to be a lot of trial and error with all this. 🙏
Hi Dhalia, I don't think I can help much however I think taking the T3 so late may not be good. My endo advises to take the last of my 3 doses no later than 5 pm. I do take it late if I'm doing a long drive late in the evening though and these days after long drives I don't sleep well - so that could be the T3 effect. As for the heart pounding, mine does that sometimes (I rather like the feeling, it doesn't disturb me except when I can't sleep because it feels as if there's a drum inside my ear!) so I've tried reducing and increasing T3 because both too much and too little thyroid hormone can cause fast heart beat. Neither seems to have made any difference, I think it's related to what I eat (not caffeine, that doesn't affect me much) so perhaps look at that. I read a post from someone who has a reaction to their own digestive juices resulting in a fast heartbeat after eating and takes antihistamine to counter it. Best of luck finding your answers.
Thank you it's reassuring to hear what you experience. Obviously as heart rate is influenced by anxiety it doesn't help for me to be disturbed by it. It is only at night, when everything always feels much worse so am going to meditate with it now. 🙏
We can all read what you write and all your replies so there is no need to keep repeating yourself and if you want to reply to anybody - just use their reply button within their response.
What are you taking at the moment -
I seem to think you have only just started experimenting with synthetic T3 x 10 mcg with 100mcg T4 - though happy to be proved wrong -
Natural Desiccated Thyroid of which Armour is the most well known brand - works very differently to synthetic thyroid hormone replacement options -
and for a smooth transition the synthetic T4 will take around 6-8 weeks to fully leave your body and in that time frame you slowly build up your dose of NDT by 1/4 grains increments, weekly or fortnightly.
I went up weekly others suggest fortnightly, but either way it's a low slow build so as one treatment declines in it's level within your body another one builds and replaces the former -
the T3 doesn't stay in the body as long as T4 - so this should be out of your system within a week or two depending how long and how much you have taken.
Very important before you start is to have base bench mark T3/T4 readings so to compare back to - and that your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are all up and maintained at optimal levels.
I monitored myself on pulse, blood pressure and body temperature twice a day - AM & PM - as I built up my dose of NDT.
There comes a week when you don't feel as good as the week before and so you drop back down to the previous dose, stay on that dose 6-8 weeks letting it bed in - and then run a blood test to see what's going on.
If you are able to build up to 2 grains without any negatives - you stay on this dose for 6-8 weeks letting it bed in and then run a blood test.
If your T3 hasn't moved much and you are still without any symptom relief maybe NDT is not the best treatment option for you -
If your T3 is moving and you have some symptom relief but not ' quite there yet ' continue low and slow from 2 grains.
Some people take NDT once a day, others dose twice a day around 12 hours apart.
That's all very interesting... I was told just to switch. Stop levo and T3 one day and take 2.5 grains ndt the next. 🤷♀️ I'm just taking ndt whilst waiting for new T3 prescription to be sorted and feel okay so far. Thanks for all the info will consider it. 🙏
Hi Pennyannie, yes thanks for pointing that out, I had just been pondering on that. Really handy to know the equivalent for both. Even though more powerful in terms of T3 my heart palpitations are lessened and I slept better the last two nights, and I don't really feel like I am on anything. Whereas with the T3 I could notice it as a drug in my body. But this might have been because the one I was taking had mannitol in it which I have reacted to strongly in Levothyroxine. So feel I need to at least try the T3 without mannitol in to see how it goes. 🤷♀️
When I initially saw the private Dr she said that I would be very unlikely to get T3 prescribed on NHS. I tried out 15mcg T3 and 100mcg T4 to start with and after 3 months my T3 was still not as high as she would have liked but then with the hot weather in the summer I got such bad hot sweats at night and heart palpitations, and increased heart rate that I said I would try Amour instead, if I had to pay for it anyway. Then the next day I spoke to the NHS Endo and he said they would prescribe T3, hence I am trying to see if I can get used to the T3 as then it will be free as oppose to £125 a month, but I can only manage 10mcg daily because of the heart symptoms so I am probably not getting enough.
I tried Amour previously for a week but from what you're saying that doesn't sound long enough. The private dr said I would now pretty much immediately if it suited me better. There was no miraculous effect except i didn't have heart palpitations so that makes it even more interesting if it actually is a much higher dose than what I am taking but my body not reacting to it the same. So all the posts on here have helped me understand that it is a process of learning and getting to know what works for me as an individual and it feels very reassuring to hear other people with similar stories. Once I can get my mannitol free T 3 I will give it another go but at least now I know that the NDT option might suit me better even if I have to pay for it for the rest of my life!!! All so unfair isn't it!!!! Fighting for something we need to keep ourselves alive and functioning. But onwards we go...💪
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