I'm on NDT. It's taken almost a year to get to this point, but last week I moved up to 2+3/4 Grains of NDT (Armour) from 2.5 grains after a blood test.
TSH - 3.78
FT4 - 14.4 Range 12-22, (24%)
FT3 - 4.7 Range 3.1-6.3, (50%)
For the first time the increase has not caused me problems. I usually suffer depression or anxiety or both with an increase. I actually feel a little more confident and have a little more energy, not much, but a bit.
Downsides are that the horrible bloating is still persistent, feet, ankles and lower legs in particular.
However, my BP and HR are up. HR is hard for me because I have permanent atrial fibrillation with a fast rate. My HR is erratic and fast so all I can do is spot a trend. Most dose increases have resulted in an increase that subsides in a few weeks. I can live with that. Hopefully it will happen with this increase. But at the moment I see an upward trend.
BP has been creeping up. It used to be excellent on Levo. But I felt terrible and had no energy at all, or stamina etc. Now it's bumping right at the top of my age range and slightly through it sometimes. I don't like that.
Does anyone else have experience of increases in BP and HR when increasing doses and if so, does it go back down again eventually or is this pointing towards me being over-medicated even though my last results were nowhere near, I have no other symptoms and actually feel like I'm moving in the right direction for once.
Could it be that my low BP was a sign of under-medication and that I should actually just accept that my BP will need treating if I get my NDT dose to this point or higher?
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FancyPants54
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Awww bump away! I don't even know how to do that!! Lol...🤣
You are slowly winning. But Afib is no fun and generally it doesn't like change. I get why you have had to increase so slowly but as you say you do feel am improvement and your Afib has done this on other increases but then settled as your body adjusts. . Yay celebration. Well done!
HR. Conundrum. Difficult to know as it could be due to your Afib. It could be due to increase that your body is adjusting too. What is your heart rate?
Re blood pressure. It may have been lower because in hypthyroism blood pressure can be in increased or lowered as a consequence. So yes it might be rising because your metabolic rate is slowly riding back up. You may end up on blood pressure tablets. Not uncommon with Afib.
I agree you are definately not over medicated re hypothyroidism.
How are you feeling now? Are you starting to recover at all from the Amiodarone nightmare?
My AF treatment is just an anticoagulant and a beta blocker, 2.5mg Nebivolol, which I switched too in case the Bisoprolol was causing my tingling feet issue. It wasn't but I've just stuck with the Nebivolol.
When I was first put onto medication for AF I was already on a blood pressure pill. The combination of that and the BB made me think I was dying. I was alone at work one day and nearly called an ambulance because I felt like I was going to pass out. My body was shaking and felt as if I would fall. My face was running with cold sweat. I felt terrible. I then twigged that a BB was also used for lowering BP and so my dose had increased suddenly. Low and behold when I told the GP they took me off the blood pressure medication and the BB did the trick.
My heartbeat is very variable. But I prefer it to be in the 80's or low 90's when sitting working at my desk or pottering about. If I do anything that takes more effort I don't really want it going too high but it will go over 100. At the moment I'm getting a bit too much time over 100. So far today my highest is 104 and lowest 73. But I can just see that it's poking into the 90's more than I like.
I think I'd be best not to worry about it. I don't feel bad and I'm very medication compliant so I had better give it a good chance to bed in and then review. I might have to accept I need a BP pill added into the mix. The GP won't like that though! He doesn't know I'm on Armour yet. I keep away from the surgery unless I have no other option.
Apologies am sure I've replied to you Fancypants but it's not here!! Must be Gremlins! 🙄I'm still on my very low dose of one grain of Armour. My heart has settled more and am sleeping much better. Thank goodness. My GP & surgeon are muttering about Endos so have managed to book one this side of Xmas... Will see how that pans out!!
It's just my ideology and pls ignore me if you want. But I don't believe in taking any T3 product as a constant dosage. Just like a diabetic doesn't take the same dose of insulin day in day out, they assess where the are and there likely needs and take appropriate amount. I take 60mg NDT as my base dose per day, then I use my symptoms and experience to drive how much more I'm going to take through out the day. If I'm going to jog or swim at lunch I'll take and extra 30mg 1 hour prior. If it's 5pm and I'm feeling cold or need a 5pm Nana nap, I'll take another 30mg. If I'm getting heart palps I take less. I often get them after dinner for an hour after taking a second or third dose of NDT during the day. I've just over cooked the NDT and gone a little too far. I completely ignore TST - waist of time.
Fluid retention in lower body can be fixed by brisk walking or jogging or swimming for 30-60 min per day. Lymphatic system, heart and kidneys need a jolt with some extra exercise.
It would be absolutely amazing to be able to go for a brisk walk or a jog 😂 or a swim. As it is, I barely have the energy to function and my feet and legs are so painful from some sort of neuropathy and muscle pain that all those things are impossible. That's before we start on the high heart rate from atrial fibrillation.
again this is just my opinion . If I have neuropathy and muscle pain I take less NDT. I went through a whole year of doctors telling me to take more Levo to get a better TSH and sending me to neurologists and MRIs for painfull feet and crawling scalp, tingling fingers, breathless on stairs - nothing wrong me, i was just taking too much Levo. I worked out I need to use my symptoms to drive Thyroid meds and I'm so much happier
I had to reduce back to 2&1/2 grains Armour again. I could not settle on the increase. And although still a huge problem, my feet are slightly less painful and I am able to do more. I’m not feeling breathless either.
Hi James.... Armour contains T3.... 9mcg for every 1 grain tablet. 😊 So you must believe in T3.I do a mixture. The TSH is not a good guide I agree on combination thyroid hormones as its usually suppressed. I used to split my daily dose but find that unnecessary these days. I keep my dose steady but a little less in hot weather & a little more in very cold weather. Dr P used to say he took a little more on very busy days too. Made me smile.
I'm trying to figure out how I'm surviving on just one grain perday when I was pre Amiodarone taking 3 3/4grains!!
re 3 3/4grains Amiodarone. You wouldn't have been absorbing it properly. And you would have been feeling pretty spacey is my guess. When you take too much Levo/NDT/T3, your body becomes desensitized and to protect it's self, it converts it into RT3 (Reverse Thyroid) and excretes it . The bigger problem is RT3 blocks up the thyroid receptors at the cellar level . So you are still low thyroid at the cellar level. You feel exhausted and your TSH is completely suppressed so you think you must be ok. (And probably go off a vitamin supplements journey to fix a thing that isn't a thing). Plus you have all these crappy symptoms, like sore feet, sore tendons, crawly skin, cant sleep, peeing constantly, feeling wacky. NDT and Levo (quoting here) are a Goldilocks drug, too little and you feel yuck, to much and you feel yuck, but just right and you feel amazing. What the medical fraternity doesn't do is help patients fine-tune Levo/NDT/T3 to find the right dose for you each day. For me thats about about plus or minus 30mg each day . Like 60mg at 6am, 30mg midday and maybe another 30 at 5pm. Yeah and I eat with NDT. It's not possible to split dose and not eat unless you are cyborg.
Yes best to find the best dose/regime for yourself. So glad you've found that sweet spot. Makes all the difference.I know on Amiodarone it s the iodine that causes the block on the receptors. In theory excess thyroid hormones converts to Rt3 & Rt2. Some does but what happened to me was my ft4 rose well over range. So clearly it couldn't revert all of my excess. Hence my drop to one grain. It's shockingly low and can only hope that matters will improve with time. I was on Amiodarone for one month. Long enough.... Lol...
Waveylines wasn't on 3 & 3/4 grains of NDT + Amiodarone. She was on that dose for years and feeling well on it. The Amiodarone is a recent 1 month thing whilst she recovers from heart op. The drop to 1 grain has come about because of the Amiodarone.
Thank u Fancypants for clarifying my situation to James. 😊😊 Yes I was very well on 33/4 grains for nearly 20years.
Amiodarone has wreaked havoc with it ability to lower conversion and partially block uptake. It's ridiculously long life is mind blowing and I do wonder how any drug should be used with such a long life, never mind the terrible things it can do.. I've been told it will take another 6 months to sort the mess out.... Meanwhile being left in a state of chemically induced hypothyroidism prison that I cant get out of.
Oh I'm so sorry to read this waveylines . I had hoped the effects would be lessening now. What a terrible thing to do to you. Why are they allowed to do this? How are you feeling in yourself? Can you potter about or are you literally glued to the bed or sofa for 6 months?
I'm doing a little better thank you. But I had to reduce my dose. I raised to 2&3/4 grains but just felt so exhausted and in so much aches and pains. With terrible foot pain.
I am now on 2&1/2 grains, into week four. I have had less foot pain and some more energy to get a bit more done. But looking back at the summer, my big issues started with raising from 2&1/4 to 2&1/2 grains. My feet and legs swelled immediately and my balance was off and my energy gone. So I am willing to try going back to 2&1/4 after Christmas if I still feel there is room to move. The problem with this is that my blood levels are low and I run out of energy during the day. I'm dosing twice a day again now and it might be that I need to add some pure T3 into my dose eventually. I think I've proved to myself over a period of months, that increasing my Armour isn't the answer. Typically you ask me how I am and today I'm really tired and a bit glum. I had a long drive yesterday and I think that took it out of me. But Monday I was moving the furniture around and getting my carpet cleaned. Some days are definitely better than others. I have so much to do today. It's a pity I've barely started!
You take care of yourself. Be waited upon. Don't push yourself. How is the heart doing after the ablation?
It sounds like you could well be spot on lowering dose but then looking at to add some T3 in. We are all so different. Make changes slowly so you can be sure what effect they are having with regular testing you will get there.
I'm OK..... Definately a slow recovery!! Blood test this week then hopefully I can increase a tadge. Xx
Fingers crossed for you. At least you were not champing at the bit to do too much too soon after the ablation! My neighbour has just done that. Put himself back into AF with a relatively high HR (he thinks, mines higher than his all the time but he panics) by doing too much immediately after his ablation. I printed out the sheets and gave them to him, but still he's in panic mode now.
I'm definitely going slow. It took from early June to increase by 1/2 a grain in little stages. Now I'm trying a reversal I'm not in a rush because I feel better than I did 3 weeks ago when I decided I needed to try reducing.
I've just been sweeping leaves and moss up as we have some furniture being delivered tomorrow and they have to bring it in via a little used door and the access was really mucky. That sort of work does me in fast. Soon ran out of steam and am now trying to recover. I notice that when I'm doing that sort of hard work and getting tired I sweat a lot and yet my temperature internally drops. I took my afternoon dose 50 minutes ago and am hoping it revives me. This is why I am wondering if adding some T3 to the NDT, midway between the doses, might help. But for the next few weeks until after Christmas when I next test, I'm leaving things as they are.
You could well be right, especially if you are a poor converter. I think once you realise it's trial and error, you learn, like you have, to build a good Base, keep a record then you can inch towards your best balance. Re extra activity.... Just remember that Dr P used to take a bit more on very busy days! Makes sense as our thyroid hormone doses are fixed, where as a functioning thyroid would just chuck a bit more out based on demand!.
James, how do you find the right dose? Like could you explain what to be aware of , like how you feel. What is it that triggers you to dose? Do you take it the same time every day? Expect, like the 30 mg an hour before you swim. Is it out of sync with what you normally do? I always thought you needed to take more if you're eating with it. Like, how do you know you need to cut down the dose?
Hi - EL. I take 60mg when I get up with breakfast every day. Then nothing for the rest of the day unless, I'm swimming or jogging for lunch . In which case I try and take the 30 mg 30-60min prior. Or when I get home from work if I'm feeling cold and it doesn't make sense or if I feel sleepy and I shouldn't be sleepy I take 15mg . I have to be really careful on the 3rd dose in the day, or consecutive days where I'm taking 3 doses. I can end up over cooked and not be able to sleep. Re Eating. I don't think food robs that much, may 5-10%. What it does in my option is slow release the NDT which is good. Re When to cut back. I just start with at a lower dose 60mg, and add as needed. If I tried to take a flat 120mg every day I would go hyper within a week. But it's really insomnia, short fuse, elevated blood pressure, tingles in my feet, crawly scalp that are the signs I've had too much. I guess my ethos is people should experiment on them selves find out what 60 feels like, find out what 120 and 360 feel like. What are the positives and negatives. Then find their correct dose some where in the middle .
My NDT comes in caps, but previously with tablets, have cut with a razor blade, or just snapped it in half with fingers, it doesn't matter too much, it averages out over a few days . Wet finders with spit and mop up crumbly bits. The main thing to use your daily symptoms to drive dosage. The idea being you should feel normal.
how you used to feel - before you became a Hashimoto. You feel a little rough in the mornings sometimes but in general you felt pretty clear headed, in control of you destiny, one top of life. When I was on Levo for 3 years I felt depressed, anxious, constant low grade head ache, felt like I would have to give up working and be on an invalid pension.
I use a pill cutter to cut tablets in half. I cut the quarter with my teeth. Being sure to use the other quarter the next day. Some people use an art knife.
Hi James is the second and third dose NDT too or Liothyronine? If it's NDT you are not only dosing your T3 on a needs basis but also your T4.T3 works differently in NDT to Liothyronine. It has much much slower rise and fall than liothyrlnine. So actually you are more likely to benifit from taking any extra first thing if you have an extra busy day ahead. This is what Dr P used to do.
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