Struggling: Still having palpitations. Endo... - Thyroid UK

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Struggling

meme profile image
meme
26 Replies

Still having palpitations. Endo appointment taking ages and cardiologist appointments are 5 to 6 months apart. So getting nowhere fast! So I am experimenting with my dose to see if my palpitations calm down.

I have cut down my NDT by 1/4 to 1 1/2 a day, as I wondered if the T3 dose is too high for me as I age. The underactive symptoms have come flooding back. So I want to add some levothyroxine. How much Levo should I add to match the 1/4 NDT I dropped? My levels for 3 and 4 are both at the lower end of range and always have been. My TSH suppressed or very low.

Thank you.

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meme
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26 Replies
greygoose profile image
greygoose

So, did the palpitations stop when you reduced the dose?

Palpitations can be a symptom of under-medication. If symptoms came flooding back, you are now under-medicated. But why add T4? Symptoms are caused - and relieved - by T3, the active hormone. And, you were only taking a small dose of T3, anyway, with 1.75 grains of NDT - around 15.75 mcg. You reduced it by 2.25 mcg. If I were you, I'd add it back in again, if you don't feel any better. :)

meme profile image
meme in reply togreygoose

Thank you for your reply.

I reduced the NDT because I read a paper which states that t3 is not so good for older people. My PVCs are slightly better taking less but tinnitus, fatigue, foot and hand pain and hair loss and poor sleep are back.

My thinking was that some T4 might suit me better.

greygoose profile image
greygoose in reply tomeme

As long as you can convert it, yes. Do you know how well you convert?

This paper you read, can you post it on here? We're always seeing papers like this, but they are often just opinions, not hard fact. Everyone needs T3, it's the active hormone needed by every single cell in your body. Why wouldn't it be good for 'older people'? Older than what, anyway? I'm 77 and take 70 mcg T3 daily at the moment, but have taken more. I get palpitations when I try to reduce my dose. You can't believe everything you read, even if it does purport to be a scientific paper. There's often a lot of myth and prejudice driving them.

meme profile image
meme in reply togreygoose

I don’t know how well I convert.I did not do well on Levo and changed to Armour about 6 to 12 months after diagnosis in 2006. I will find some early results and post.

I have recently been diagnosed with an enlarged heart and ectopic beats at 16 to 25%.

I am 70.

Underactive thyroid undiagnosed for around 20 years.

I will try and find the paper I mentioned.

greygoose profile image
greygoose in reply tomeme

Yes, the way to know how well you convert is to test FT4 and FT3 at the same time, when on levo only. But, if you were only on levo for about a year maximum, you probably weren't on a high enough dose, anyway.

Also, if you've been on that dose of NDT for around 19 years, your body was used to that amount of T3, so I very much doubt you needed to decrease it. It might not be a good idea to start someone on T3 at 70 - although I would dispute that - but it doesn't suddenly become a bad for you been on it for nearly 20 years, just because you hit 70. I don't believe that. The heart needs a lot of T3 at all ages.

But, seeing the article and some blood test results would be good. :)

shaws profile image
shawsAdministrator in reply tomeme

If T3 is not good for older people, I should be dead and buried by now 😂whereas it has given me a normal existence with no clinical symptoms at all. I feel well, am energetic and feel my health is 'normal'.

SlowDragon profile image
SlowDragonAdministrator

Do you normally split your NDT into 2 or 3 doses spread through the day

but tinnitus, fatigue, foot and hand pain and hair loss and poor sleep are back.

You could try adding 25mcg or 50mcg levothyroxine

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Hairloss often linked to low iron/ferritin

Palpitations often linked to low iron too

Tinnitus to low B vitamins especially B12

Foot pain low Vitamin D and low Ft3

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine or NDT

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Do you have autoimmune thyroid disease diagnosed by high thyroid antibodies

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

meme profile image
meme in reply toSlowDragon

I do not have antibodies.I split dose in 2.

I test before 9 and follow guidance .

All vitamins were good in Feb. I will find results later and post.

Endo was happy with thyroid results in Feb. 3/4 and TSH. Will post numbers later.

I take D, k2 and magnesium.

meme profile image
meme in reply toSlowDragon

Thank you for your reply.

I have added some results to my post.

Unable to locate the paper re T3 but found this.

Screen shot
jamesal0 profile image
jamesal0

Agree with Gray goose - you get "heart feeling" when low thyroid hormone and crashing Palps when too high. Don't confuse these. Split dose and push the dose (optimise) up over a few weeks until you get side effects like crashing Palps , no sleep, head ache etc then back off 30mg. Also Record your temp a few times a day for a few weeks and see if it ever drops low 36C ish. (low hormones)

My heart Palps if I eat a big heavy meals these days, probably blood sugar related, but I just eat less and low carb and I'm fine.

meme profile image
meme in reply tojamesal0

I have had palpitations for over 20 years. Several 24 hour tapes confirm this, before and after thyroid diagnosis and treatment.

If I try to increase meds they get worse. I can manage 1 3/4 grains in the winter but in warmer weather I have to cut down to 1 1/2 or get more PVCs. I have struggled to get dose right.

I was on 175 Levo before I tried Armour. Tests almost always low in range.

jamesal0 profile image
jamesal0 in reply tomeme

I wouldn't describe my dose as stable either. :-) I take 60mg for breakfast and 60 with dinner. But 1-2 times a week I feel overdosed and drop a 60. My main symptoms are I can't sleep and have slight palps. But I'm sure if I did bloods after a bad night I'd actually measure low. I also find that I store up NDT in my body and then when I swim (1km) or cycle 30km it gets dumped back into my circulation and I have a bad night. So I have to be careful if I haven't swam for a few weeks . That evening I should skip my 60mg or I'm going to have bad night.

I also need more NDT in the winter and less in summer. Maybe 30mg less perday. I also drink lots (4-5 cups) of real coffee, helps with the NDT headache. Sounds like you have a good understanding of your body and are making the most of NDT. I love the stuff, taken right it gives you a burst of energy. At 56, I'm competitive sailing, riding dirt motorcycles, jogging, swimming, cycling. Taking 120mg NDT, tinny bit of B12 and Testosterone Hormone Therapy.

pennyannie profile image
pennyannie

Hello Meme :

I've been self medicating with NDT for over 4 years and shall soon be 75 :

There is a unique ratio of T3 and T4 in NDT and adding in T4 simply erodes the benefit of this uniqueness which many thousands of people find works very well for them.

I'd be inclined to increase the NDT but looking back I see you have been mixing TR Man and Tru Thyroid and this last product was found to be unreliable and not True at all ?

meme profile image
meme in reply topennyannie

I have been taking T man only for over a year now. I did try to increase to 2 grains but it landed me in AxE with palpitations and high BP on several occasions. P. So drop back. The hospital refused to test thyroid at the time. My understanding is that(pig) NDT has a little more T3 than us humans produce.

pennyannie profile image
pennyannie in reply tomeme

Pig thyroid contains all the same known hormones as that of the human gland - namely trace elements of T1. T2 and calcitonin plus a measure of T3 and a measure of T4 :

I'm taking Thyroid S and the declared measure of 1 grain / tablet is 60 mg and the breakdown of T3 is 9mg + 38 mg T4 :

It's said that a fully functioning working thyroid would be supporting you daily with approximately 10 mcg T3 + 100 mcg T4 :

I would think your TR Man and Tru Thyroid well past any BB date and now the market has opened up again, it might be in your best interest to buy another brand of NDT to at least rule in or out your current health issue.

helvella profile image
helvellaAdministrator in reply topennyannie

But we have never seen any evidence that calcitonin can be delivered to our bloodstreams orally. In the fairly rare cases calcitonin has been used, it has been delivered by nasal spray or injection because it is destroyed by digestion. It has usually been salmon calcitonin.

The thyroid makes the precursors of thyroid hormones monoiodotyrosine (MIT), and diiodotyrosine (DIT).

I strongly suspect that could be more MIT and DIT than T2 and T1. After all, MIT and DIT are very much the main pathway towards thyroid hormones. So the thyroid has to produce enough to form all the T4 and T3 it is called on to release.

Whereas T2 and T1 are usually considered to be metabolites on the path from T4 to T3 to T2 to T1.

T1 cannot be formed from directly from MIT and/or DIT. And while T2 could theoretically be formed from two MIT molecules, I'm not sure if it is possible or does happen.

Anyway, I find it interesting that MIT and DIT are almost never mentioned in terms of the constituents of desiccated thyroid.

meme profile image
meme in reply topennyannie

I have some Thyroid S. Was planning to take it when TMan ran out. My palpitations go back well over a year so T man would have been in date at that time.

Batty1 profile image
Batty1

Do you take any other medications besides thyroid? Did you ever do your own thyroid testing based on the recommendation here to see where your actually at thyroid wise?

meme profile image
meme in reply toBatty1

Vitamin D, k3 and magnesium . The odd iron but it makes me constipated!I do use Medichecks as well as GP for bloods. I always test as recommended.

Batty1 profile image
Batty1 in reply tomeme

If you have recent blood test for thyroid you should post them.

meme profile image
meme in reply toBatty1

Jan 22.

TSH 0.40(0.27 -4.50) fT3 5.33(3.1-6.8) fT4 12(11-23).

Vit D 113

B12 636

Folate 20

Sept 21

TSH 0.25 fT3 4.42 fT4 10.9

April 21

TSH 1.1 fT3 5.54 fT4 14.8

D 145

SlowDragon profile image
SlowDragonAdministrator in reply tomeme

No ferritin result

Or iron

Some people add levothyroxine alongside NDT to improve low Ft4

Others find levothyroxine plus small doses of T3 suits them better than NDT

What were your results on 175mcg levothyroxine

meme profile image
meme in reply toSlowDragon

Ferritin April 21.

57.30(20.00-260.0

Not been retested this year. I now eat more meat and liver pate and the odd gentle iron.

I will have to find a letter from 2007/8 to see when I changed to NDT.

meme profile image
meme in reply toSlowDragon

I found results from 2006 when I started Levo.Nov 2006 TSH 7.5 fT4 12.5 T3 not tested

Dec 2006 TSH 8.00 . No T3 or 4 tested.

Feb 2007 TSH 2.8 . fT4 15.8. T3 not tested.

April 2007 TSH 0.01. fT4 23.00 T3 not tested. I would have been on 175 Levo at this point

I changed to Armour late May 2007.

The next test is on Armour TSH 0.01 fT4 19.9 fT3 6.2(3.60-6.5).

Oct 2007 TSH 0.01 fT4 19.2 fT3 4.92

So free T3 not tested till I was on Armour.

SlowDragon profile image
SlowDragonAdministrator in reply tomeme

Nov 2006 TSH 7.5 fT4 12.5 T3 not tested

Dec 2006 TSH 8.00 . No T3 or 4 tested.

Feb 2007 TSH 2.8 . fT4 15.8. T3 not tested.

April 2007 TSH 0.01. fT4 23.00 T3 not tested.

I would have been on 175 Levo at this point

What’s the range on Ft4 results

April 2007 …..possibly slightly over medicated/probably poor conversion

Obviously with no Ft3 result impossible to say

If you had those results now the advice would be to get full thyroid and vitamin testing done yourself privately

If Ft4 was high and Ft3 low …..likely low vitamin levels

If vitamins were low, improving to optimal frequently improves conversion of Ft4 to Ft3

If Ft3 remained low after improving vitamin levels to optimal

Adding SMALL dose of T3 alongside levothyroxine

Initially reduce levothyroxine by 25mcg…and 5 days later add 5mcg T3 for first 1-2 weeks, and then adding 2nd 5mcg T3 approx 10 hours after waking dose

Hold at that dose and retest after 6-8 weeks

Often 3rd 5mcg dose added as 3rd dose and T3 taken every 8 hours approx

meme profile image
meme in reply toSlowDragon

FT 4 range (9- 19.1) but at a later date it changed to 11- 23

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