Medication help please NDT please!

[Ajva]

I posted a few days ago about my latest labs. I was on 1 1/2 grains of armour. The past few days I have cut myself down to 1/2 as I tried cutting down to 1 grain but still felt awful and hyper. My Dr said this was ok as hyper.

I already have PoTs so sensitive to anything effected heart rate. Well my HR is right down and I feel so much calmer. My hearts been racing since I went up to 1 grain a few months back, I have had a terrible time with extremely high HR and i have now realised it is the NDT doing this (higher doses). I feel fine on 1/2 grain.

I am tempted to just add in 25mg tirisont to my 1/2 grain NDT instead of upping back to 1 grain on NDT. I didn’t feel great on tirosint but it kept my HR nice and low.

Any input would be appreciated. I have like 100 tablets of tirosint capsules of 50mg and I can cut them in half to 25mg.

[Imaaan]

Hi,

I'm on combo treatment of Erfa and synthroid because I have a conversion issue. I'm no where I would like to be but with every increase of Erfa and decrease in t4 things are improving thanks to God.

Just to give you an idea I started out with 75mcg of synthroid before I made a switch to ndt and t4. I began with 30 mg of Erfa in the morning and at night 37.5mcg of Synthroid (t4) four nights alternated with 50mcg taken on 3 nights. 6 weeks later it was increased to 45mg of Erfa and 25mcg of Synthroid. Currently I'm on 1 grain of Erfa and 12.5 mcg.

A racing heart rate is never fun. I've struggled with tachycardia on and off through out the years and have had 2 holter tests done.

If you are planning to stick to 1/2 a grain, I would suggest to add in 50mcg of t4 to help because 1/2 grain wont be enough for your needs. You can alternate between 25 and 50 as well. To ease with side effects maybe take your meds split up in the morning and night

[Ajva in reply to Imaaan]

So are you looking to eventually just be on ERFA? The problem I am having with blood levels is t4 is 13, t3 is 7.8 (over range) and tsh is perfect suppressed. I however felt so hyper on 1.5 grains as it is pushing my t3 far too high. I’m not going to stick with 1/2 grain as like you say it is not enough. I may go up to 3/4 grain and 25mg or t4 tirosint. I’m just a bit stuck with what to do as my Dr doesn’t prescribe tirosint only levo & NDT

[Imaaan in reply to Ajva]

I would love to end up on ndt alone but who knows how my heart will react as I try to increase the ndt. Time will tell God willingly.

45 mg of ndt with 25 mcg of t4 sounds good. If there is a levo that you are familiar with from the past then just try that and see how it goes. I've been hypothyroid for over 20 yrs and have used the same brand, Synthroid.

Alternatively you can always purchase out of pocket tirosint but its costly. At least in Canada it is.

[Ajva in reply to Imaaan]

So where do you get your synthroid from? I pay like £400 every 3 months for bloods, meds and a Private app. So it is costing me a lot.

I have actually never tolerated any brand or type of levo. It makes me feel like I am going to die even after a few days. I am just wondering it with the NDT I might tolerate it better. But I think I am always going to have an issue on a high dose of NDT due to heart problems already.

[Imaaan in reply to Ajva]

Sorry to hear that you pay out of pocket so much already. From my understanding Synthroid isnt available in the UK. One of the more active members brought it to my attention. In Canada and the US, it's the most prescribed brand. I get mine from my family physician and it isnt costly. Never have taken any generic or tried other brands.

If you havent been able tolerate it well in the past, it's good you're taking a lower dose. Hopefully this time around you will be fine.

[Alanna012]

Did you try levo only? How was that with your heart rate?

When you have a potent batch of Armour it is quite strong. I myself had to go up in quarter grain increments. I couldn't tolerate jumping on it. You could try that rather than going up by a whole half-grain.

If your heart rate is actually high (as opposed to feeling like it's racing, which is common but unnerving at first) then you may be specially sensitive to the initial rush of T3 and perhaps levo only, or splitting the half-grain and taking some levo at the same time might help.

Taking it with food or tea/coffee to cut down the effect of the T3 a little, might also help.

Personally I find the heart rate settles after a while. Often before taking t3 the metabolism has been winding down and the heart beat slowed, suddenly it must work 'harder' - actually at the speed it is supposed to. But it can feel odd, unsettling and anxiety inducing at first because you are no longer used to it. Your heart beat can sound loud all of a sudden, you may even be able to hear it pounding in your ears, as well as feel shaky and unable to 'come down'. Adjusting dose to go up very slow may help. But that is only my anecdotal advice.

But I do believe the medical instructions that come with Armour do say increments of a quarter grain should be used in those with heart problems.

Finally it may be that Armour doesn't suit you and another ndt might suit you better. But you really have to give a proper trial before reaching that conclusion.

[Ajva in reply to Alanna012]

I can’t seem to get any other type of NDT and I didn’t get on with ERFA.

What I was saying in my post above is I already have PoTs so I have high heart rate but it is usually controlled ok with heart medication. But, since I have been increasing armour very slowly so it has taken 9 months to get to 1 grain. My heart rate is getting worse and uncontrollable even on my heat meds.

I felt like I was going to die after few months on levo, so I obviously need the t3 but not a lot of it. So a NDT & tirosint might be ok.

I am going to go back up to 3/4 grain then add levo in just 25mg. I can’t take generic so will try tirosint again.

[Alanna012 in reply to Ajva]

Ahh sorry I misunderstood, clearly it's more difficult for you and I'm glad you've found following replies to be more tailored to your experience.

Unfortunately for many of us with Hypothyroidism there is no one easy fix and it's tweaking and tweaking until our body finally accepts something. Hopefully you'll get there soon x

[Petalrugbaba]

Hi. I had a similar problem. I was taking 1.5 grains of ERFA and it really affected my heart rate ( palpitations and fast rate/ jittery even though my lab results were good but in the high range of T3), so I dropped slowly to 1 grain ERFA and 25mg of Levothyroxin but still had the problem and was worried about the low level of my T4. So I changed the combination to 1/2 grain ERFA and added 50 mg Levothyroxin and this combination reduced my heart rate and the palpitations stopped. I still have an ectopic heartbeat occasionally but it’s not a problem. It really is a matter of tweaking until you find a dose/ combination that suits.

[Ajva in reply to Petalrugbaba]

Ah yes I am glad you replied as I think I am just struggling anything over 1/2 grain but my body needs t3 and I can’t tolerate t3 alone.

I have the same problem really low t4 not even in range, high t3 and low tsh (which is good). I’m going to just add in 25mg tirosint with the 1/2 grain armour and I think that might hopefully work better. Even with tiny 1/4 grain increases over a long period of time so 6 months on 3/4 grain then going to 1 grain, my body and heart still can’t cope. I am the same feel jittery, anxious hair falling out and dizzy

[Petalrugbaba in reply to Ajva]

Yes. I think some of us have hearts that are just more sensitive. I can’t wear magnetic bracelets for example as that triggers heart palpitations. My sister is the same. I’ve had heart scan and worn the heart halter and no problems with the heart shown. It was just the t3 that was triggering the heart palpitations. Even if I took the NDT in the morning they lasted all day and night. I didn’t want to be on beta blockers for the rest of my life. But I keep a supply just in case I get the odd bout of palpitations or if the ectopic beats become bothersome. I have accepted that I will always have ectopic beats. As a note I also take magnesium at night as that really helps to calm the heart and has other benefits. The combination works you just have to tweek and be patient to allow your heart to settle down. Good luck I’m sure you will get there.

[Ajva in reply to Petalrugbaba]

I am already on heart medication I take something called Ivabradine so not a beater blocker but a heart drug. I was finding I was going higher and higher on doses just to compensate the NDT making my heart race. So I need to stay on a lower dose of NDT without a doubt.

[Petalrugbaba in reply to Ajva]

Yes I agree. You must take care of your heart above all. Lots of folk on here manage their thyroid condition and achieve great health. I have found that I have to accept the medication, no matter what dose, never removes all my hypo symptoms ( weight problems, some tiredness, aching joints etc) but it does improve my life. Wishing you all the best xx

[jgelliss in reply to Petalrugbaba]

Palpitations are awful symptoms to deal with. Having Iron/ferritin levels checked is very important to be able to tolerate T3 /NDT and T4 meds. I was experiencing the same issues and my Iron levels were very low . It's also possible that fillers in the thyroid meds are causing problems. I had with Synthroid. Also Cortisol/Adrenal testing would be very helpful. The 24 hour salivary testing.

Best Wishes.

[Ajva in reply to jgelliss]

Yes I do have very low iron so I am working on lifting levels through diet and supplements. I think the fillers always cause my issues even on tirsont and compounded I still struggled to tolerate.

I have a Saliva test last year but I am going to order another one on medichecks.