Trial on ERFA/Levo raised heart rate consultant... - Thyroid UK

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Trial on ERFA/Levo raised heart rate consultant suggest Liothyronine/Levo instead - any thoughts experience on this very welcome.

SmPea profile image
8 Replies

I started trial on NDT (ERFA) in February 2021 with private consultant. I have Hashimoto’s and for years been on 100mg Levo. My FT3 always in lower range and still had many symptoms of hypothyroidism. So took the plunge to trial adding FT3. The consultant took me straight off Levo one day and on to ERFA 30mg 7.00am and 2.00pm initially. Further adjustments were made to get FT3 and FT4 into upper ranges. He prescribed some Levo again in order to try and achieve this. During this trial I have experienced a pounding heart from time to time.

The situation currently is I am taking at 7.00am 30mg ERFA and 50mg Levo plus

2.00pm 30mg ERFA

My heart rate/pounding has got worse and is generally over 80bpm while resting and is often higher during the night. When I was just on Levo it was usually between 59 - 63ish. I find the heart rate now uncomfortable. Got back to consultant who says it’s ‘likely due to the T3 in the ERFA. He is suggesting I try Liothyronine instead and if that doesn’t work I may need to see a heart specialist. ?!

It would be really helpful to know what some of you think about this.

Attached is my latest blood tests I have been gluten free for over a year and supplement Vit D and magnesium.

Many thanks in advance of your replies.

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8 Replies
Lalatoot profile image
Lalatoot

The consultant stopped 100mcg levo one day and the next day you were to take 2 x 18mcg T4 and 2 x 4mcg T3. Your T4 dose dropped from 100mcg to 36mcg just like that! And you were already low on FT3 on 100mcg levo.No wonder your body is complaining.

Then you added in 50mcg levo so your current total dose is 86mcg T4 and 8mcg T3.

In the world of thyroid we need to make little changes slowly and one at a time. You have made too many changes too quickly and too drastically in my opinion. We usually adjust T4 doses by 25mcg max; T3 doses by 5mcg max; and NDT by half a grain max.

I am sorry if this sounds more blunt than factual. I do sympathise with your predicament.

Your FT4 and FT3 levels show that you are not overmedicated. When on T3 TSH tends to be suppressed so your result is to be expected.

When on combo it takes times to adjust the doses to get to where we feel well. It can take years of slowly altering T4 or T3 a little at a time, waiting 6 - 8 weeks then getting blood tests. It is not a quick solution!

Going onto levo and liothyronine will let you adjust the doses independently rather than the fixed doses you get from ERFA. and you have already found that the fixed ERFA dosage wasn't right for you so you added levo. If you feel that levo/lio is an option for you what you need to do is ensure that as you swap over you do not take another big drop in dosage.

I am not sure what to suggest by way of a transition protocol.

SmPea profile image
SmPea in reply toLalatoot

All very helpful thoughts, thank you. I can see the advantage of managing T4 T3 levels if doing combo of Liothyronine and Levo. Will be discussing this with private Consultant next week but will keep in mind making changes small and slow.

humanbean profile image
humanbean

CRP - C-Reactive Protein

This is an inflammation marker - it goes up when inflammation levels rise. Optimal is below 1 so yours is alreadt good.

Ferritin (Iron stores)

Optimal is very approximately 50% - 75% of the way through the range which is very roughly 80 - 120 with the range you've been given. Some people suggest a tighter optimal range of 90 - 110. But yours is very good. If you want to raise your level a little, use iron-rich food, don't supplement, because you are likely to push your ferritin too high. Excess iron in the body is poisonous because the body has no natural means to excrete it.

Folate

Optimal is difficult to specify with no upper limit to the range. When an upper limit is given for folate it can vary hugely from one lab to another (from approx 15 to nearly 70). I try to keep my own level between 15 and 20. On this forum we recommend a minimum of double figures. If you ever need to supplement you need to read this link first :

chriskresser.com/folate-vs-...

Vitamin B12 - Active

Optimal for this is usually quoted as greater than 100 pmol/L. If you ever need to or want to supplement, the best supplement for most people is methylcobalamin.

Vitamin D

Optimal for this is usually quoted as 100 - 150 nmol/L or 125 nmol/L.

If you ever need to supplement vitamin D this dose calculator will help :

grassrootshealth.net/projec...

TSH 0.08 (0.27 - 4.2)

Free T4 17.2 (12 - 22) 52% of the way through the range

Free T3 4.78 (3.1 - 6.8) 45% of the way through the range

Optimal for thyroid hormones Free T4 and Free T3 varies from patient to patient and it takes trial and error for each patient to find what works for them. And optimal can vary depending on whether the patient takes Levo or Levo + T3 or NDT or NDT + something else. But it would be fairly rare for anyone who writes into this forum to feel well with the results you've given. For most of us the most important level is Free T3 and we need a level around 50% - 70% of the way through the range. But if you feel best at 80% or 90% that's fine too if that's what works.

I think at the moment you are under-dosed. Both your FT4 and FT3 are roughly mid-range. I am not sure what prompted your doctor to add Levo to your NDT when you really need more NDT to raise both T4 and T3. I would never have added Levo I would have suggested adding NDT.

Regarding your heart pounding, it is most likely because your levels of T4 and T3 are too low for you. But you might get some benefit from changing the timing of your doses. Try taking the bulk of your NDT just before bed. Then start taking notes of when your heart starts pounding for the next week and take your second dose when it does. (Because you will have changed when you take your biggest dose your heart pounding time will change too.) When you know when your heart starts to pound (on average) take your second dose of NDT an hour before it.

A lot of people do well taking all their thyroid hormones at once. Perhaps that is also something you can try.

In a healthy person the body needs T3 at reasonable levels 24 hours a day. And although the difference is slight in healthy people, the body produces slightly more T3 at night than it does during the day, presumably because the body needs it for the repairs and housekeeping the body does when people are asleep.

Don't be afraid to experiment with the time(s) you take your hormones, and the size of doses you take. They need to work best for you, not your doctor.

SmPea profile image
SmPea in reply tohumanbean

That is so helpful, thank you.

I cannot really comment on your experience since I am not there yet. Lately, I have been looking into doctors prescribing NDT/synthetic T3+T4 so I have been doing a lot of reading to find the best option. I have found some people who said they did not feel better or even worse on NDT, but improved on synthetic T3+T4. So, in some people, NDT makes matters worse. It´s not that they don´t need T3, but they react to something in NDT. Some say NDT can trigger or worsen autoimmune attacks in people with Hashimoto´s disease. Unfortunately, doctors who prescribe NDT tend to think it´s superior to synthetic T3.

It could of course be that you don´t need T3 or take too much, but I have found people who felt better on synthetic combo drugs than on NDT. Of course, taking T3 and T4 separately makes it easier tweak dosages.

SmPea profile image
SmPea in reply to

Yes, I’m wondering if NDT isn’t suiting me. I’m also attracted to Liothyronine as my NHS Consultant said if I come to him having been prescribed Liothyronine privately and it looks like it is improving my health he will put in a case for it to be prescribed by the NHS! That would be so good cost wise!

shaws profile image
shawsAdministrator

When I took levothyroxine alone I had awful palpitations during the night. After quite a number of overnight monitors, the cardiologist couldn't figure out what was happening and was considering putting an implant into my heart 'too see what was going on'.

Just at that point T3 was added to T4 and all palpitations ceased. I eventually went on to T3 only. I take that now and am well with no symptoms. Obviously, not everyone is identical 'more's the pity' and it can take some time to find what dose of thyroid hormones suits us.

SmPea profile image
SmPea in reply toshaws

It does seem time and patience is the thing.

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