My results : I was on 75mcg eltroxin then went to... - Thyroid UK

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mybabyboy profile image
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I was on 75mcg eltroxin then went to another doctor beck all of a sudden started having palpitations heart rate flying breathless and trembling. I’m on 65mg ndt nature trout and still have same problems my Tsh was 3.27and now 1.11 my free t4 was 18.7 now 14.4 antibodies were 527 can anybody throw some light on my situation I’m hypo with hasimotos my b12 is 440 my folate is 7.7 and I’m v low on vit d . X

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mybabyboy
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greygoose profile image
greygoose

If your TSH is over three, you're very under-medicated. Palpitations can be a symptom of under-medication.

Your B12 and folate are a bit on the low-side, you would probably benefit from a good B complex with methylcobalamin and 400 mcg methylfolate - Igennus do a good one, which you can find on Amazon.

If your vit D is low, you need to supplement it, and also take the co-factors, vit K2-MK7 and magnesium.

Your nutrients all need to be optimal when taking NDT. You will not do well on it, otherwise. You also need your ferritin tested.

Out of curiosity, how do you take your NDT? Do you take it on an empty stomach, etc. just like levo?

And, how do you do your tests? Early morning, after fasting over-night, leaving an 8 to 12 hour gap between your last dose of NDT and the blood draw?

:)

mybabyboy profile image
mybabyboy in reply togreygoose

Hiya I take ndt when I wake on empty tummy 65mg , last bloods was taken in the hospital because I was was suffering with v bad palpitations flying heart rate and tremors and breathlessness. All the other bloods I got a private lab to do them. The hospital said my iron high and my ferritin 219 they said my b12 fine and folate but I don’t feel fine I can’t sleep at night terrified of the palpitations and breathlessness. I’m two months like this. Hope to get bloods done tues again privately. I’m on ndt since the 20th of dec , don’t feel much better . X

greygoose profile image
greygoose in reply tomybabyboy

OK, but how long was the gap between your last dose of NDT and the blood draw for your last bloods. The length of time you leave will affect the results.

they said my b12 fine and folate

They said that because the B12 and folate are in-range, but they're too low in the range. You would probably benefit from raising them. Doctors don't understand the subtilties of reading lab test results.

mybabyboy profile image
mybabyboy in reply togreygoose

Haven’t had all my thyroid bloods done in the hospital just tsh and ftfree 4 . When I took my naturetroid/ndt I took it about 8am Hospital took my bloods sbout 3pm that day and I had porridge for breakfast gluten free with rice milk bec I didn’t know I end up in hospital with palpitations flying heart rate and breathless X

mybabyboy profile image
mybabyboy in reply tomybabyboy

Was on eltroxin for 2 yrs that’s when the symptoms started about 2 months ago , then came off eltroxin 75mcg to 50 no change then this new dr put me on ndt and no real change I’m on ndt since 20th dec. 2019

greygoose profile image
greygoose in reply tomybabyboy

OK, so there was a gap of about 7 hours. Which means that you have a false high FT4.

Of course, the TSH would be lower at 3 pm than it would at 8 am, but hospitals don't seem to know that. So, your TSH is much too high for someone taking NDT. Which means that you are under-medicated. And, being under-medicated would probably cause the symptoms you had. :)

mybabyboy profile image
mybabyboy in reply togreygoose

What do I do to try and help myself? I’m going round in circles. I’m due back at the new dr that prescribed ndt for me on Tuesday at 4.30pm to see how I’m getting on with ndt. I want him to take my bloods will I fast all day? It’s about 2 hrs drive from me. The hospital told me it’s anxiety and I know it’s not. Only for this new dr I’d be the same on eltroxin. But the symptoms still there . I live in the north west of Ireland X

greygoose profile image
greygoose in reply tomybabyboy

Is it not possible for you to get bloods done nearer home? Because the TSH is highest early in the morning, and as it's all that most doctors look at, you want that as high as possible. You also need the FT3 tested, as you're taking T3. But, you need to leave a gap of 8 to 12 hours between your last dose of NDT and the blood draw. So, I don't quite know how you can manage all that with such a long drive.

I do think you need an increase in dose. One grain is only a small dose. And, you won't get better until you're on the right dose. But, you also need the right testing.

mybabyboy profile image
mybabyboy in reply togreygoose

I can do a test at home private one I can do that from 6am onwards. If that’s any better . I used that company the last time and it was a fasting blood test was ft3 was 4.40 ft4 ft4 18.50 tsh was 3.27 t4 was 88.00 than was 85.30 and antibodies was 527

mybabyboy profile image
mybabyboy in reply tomybabyboy

85.30 was tgab

mybabyboy profile image
mybabyboy in reply tomybabyboy

They are the last tests I had in dec I got done private. The other one the hospital did and the only tested the two hormones. Hopefully this doc will increase the ndt so I can get some relief. I think he mentioned something about I might not be able to convert. I love to stop taking all meds altogether. To begin with my thyroid wasn’t that bad at all. But doc put me on meds Incase it got bad. Now I even have high ferritin levels 219 😭

greygoose profile image
greygoose in reply tomybabyboy

As you have Hashi's, it would get worse, so your doctor was right to put you on thyroid hormone. And, I'm afraid, it's for life.

Ferritin can be high with inflammation, but to know if you have inflammation you need your inflammation markers tested. CRP is one of them. Have you had that tested. It wouldn't be starting levo that caused the high ferritin.

greygoose profile image
greygoose in reply tomybabyboy

I'm afraid those results are meaningless without the ranges, and without know what you were taking at the time. But, I should imagine that the antibodies are positive, confirming Hashi's. And the TSH was too high.

mybabyboy profile image
mybabyboy in reply togreygoose

I was taking eltroxin at the time. I’ll just wait and see will this dr put up my ndt and see if I can get rid of these awful symptoms as my life has just came to a halt these last two months x

mybabyboy profile image
mybabyboy in reply tomybabyboy

My crp was practically nothing very low . X

mybabyboy profile image
mybabyboy in reply tomybabyboy

Crp was 1

greygoose profile image
greygoose in reply tomybabyboy

If he doesn't then buy your own and self-treat. But, I think he will. :)

mybabyboy profile image
mybabyboy in reply togreygoose

Hopefully he does I know 1 grain v low dose, but it’s only last two months when I was thyroxine or eltroxin that these symptoms started bec when he upped my dose from 50 to 75 my symptoms started. thank you so much for your time. I had heart echo ecg holter monitor and it all says my heart fine just beating too fast when I get these episodes mostly at night x

JaneChapple profile image
JaneChapple in reply tomybabyboy

mybabyboy

Im pretty sure you are undermedicated as the very knowledgeable folk on this site have indicated. However has anyone mentioned sleep apnea? This can cause palpitations/heart rate disturbances too. Might be worthvlooking into. Think I have a mild form ofcthis but because my sleep apnea score is only 5 NHS wont treat. Needs to be 12 before they will act. A bit like TSH of 10 or above before they will do anything!

Hope you get some answers. However you are lucky to get NDT presceibed by NHS. They wont prescribe it very much here if at all!

Good luck. Hope you get sorteepd soon.

JaneCx

mybabyboy profile image
mybabyboy in reply toJaneChapple

Hi Jane I live in Ireland. It’s a gp that’s also into functional meds too. No I don’t have sleep apnea. It’s ever since I went on eltroxin I got these awful symptoms. My gp has started me off on one grain 65mg naturetroid ndt but may not be enough like you all said. I’m fed up no quality of life at all can’t work it’s aeful we just left to linger like this.

in reply tomybabyboy

I'm on levothyroxine only. When a test showed TSH at 0.01 I was told to reduce it even though T4 and T3 were still in range. I tried to object but of course the problem is that the doctor holds the prescription sheet. I knew I was still under, not over medicated but hoped time would show I needed an increase not a decrease.

Sure enough, after about 4 months later I started to get breathlessness and swollen ankles.

I had heart tests (just ECG and chest X ray) which were both normal, though pulse was (79), just below top of range. So they agreed to put the Levo back up to 100mcg.

After finding an amazing doctor who actually acknowledges that they didn't teach much about the thyroid in med school, and that I do basically know what I'm talking about, my levo is now up to 150 (25mcg increments of course), and I feel a bit better, though likely still a little way to go.

When taking my own pulse it's usually well over 80, even when resting. But when I lie down it's often faster, feels stronger, or both . Palpitations are not usually noticeable but, again usually on lying down, there's sometimes a strange sense of quivering in my chest. Not sure if they are palps or not as the wrist pulse seems normal.

I hope that will reassure you that being hypothyroid can indeed cause a fast heart rate and other problems usually connected with being hyper. You are not overmedicated but almost certainly under.

So try not to worry, and don't give up :-)

mybabyboy profile image
mybabyboy in reply to

Thank you. They told me my heart fine all tests reflect this but it’s the symptoms that’s causing my heart to speed up. I’m putting my faith in this new dr that prescribing ndt for me. 65mg 1 grain isn’t a lot but I think he’s taking it slowly until he sees my blood results. Thank u for your kind words xx

jostafford0 profile image
jostafford0 in reply tomybabyboy

Hi mybabyboy, I had similar problems when trying NDT. I got heart palpitations and tremors which were awful. It didn't matter how much I took either the symptoms never went away. I stopped after 3 weeks as I was feeling absolutely dreadful. Some people just can't tolerate NDT and you may be one of them like me. I've never heard of Eltroxin so can't comment on that. Jo x

mybabyboy profile image
mybabyboy in reply tojostafford0

Eltroxin is Levo thyroxine it’s a generic I had these symptoms on Levo and still have them on ndt so I can’t blame ndt one thing ndt gave me is I’m more alert xx

in reply tomybabyboy

More alert is a start. Sometimes one feels like Oliver Twist "Please sir, can I have some more?" A lot seems to depend on how different parts of your body use the hormone too. I can often tell if there's need for another increase when the hairs (on my face!) don't need plucking so often! :-D

mybabyboy profile image
mybabyboy in reply to

I’d be grand if these symptoms would just go away. I thought I was grand on eltroxin no side effects for two yrs then they increased 50 to 75 then bag all hell broke loose heart palpitations flying heart rate breathless tremors shivers etc that’s after two yrs and new diagnosis Hashimoto xx

in reply tomybabyboy

Maybe you were having what's called a "Hyper swing"? If you have Hashimoto's (autoimmune hypothyroidism) sometimes the destroyed thyroid cells disintegrate and release too much hormone all at once. This can give apparent symptom of over medication.

Often, when that settles down you are more hypo than before.

That's yet another complication of thyroid trouble! Few doctors are flexible enough to cope, and are taught to go by blood tests rather than symptoms. Really we need to be treated on the basis of both.

The results you posted certainly seem as if you were under medicated then.

mybabyboy profile image
mybabyboy in reply to

These were results before put on ndt 0.27 -4 normal range mine was 3.27 ft4 normal range 12-22 mine was 18.5 Freet3 normal range 3.1 -6.8 mine was 4.4 ATP tpex 0.34 mine was 527 high T4 59-154 mine was 88 Tgab normal range 0. 115 mine was 85.3 haven’t had any blood draw since only hospital did tsh 1.11 and free t4 14.4

greygoose profile image
greygoose in reply tomybabyboy

You're welcome. :)

gabkad profile image
gabkad

What do you mean that your iron is high?

Have you heard of the Celtic Curse?

I have 'met' one of my distant cousins via Ancestry.com

and she had both copies of the gene (I have one and another

cousin has one). She had to have her thyroid removed 30

years ago because it was so full of iron her body produced

antibodies to it.

So it's something to double check.

This condition affects the heart and liver etc.

mybabyboy profile image
mybabyboy in reply togabkad

My ferritin level is 219 and the doctor told me my iron level high so I had to have gene test for the Celtic curse so no results as of yet. Be great if it was that least id know what’s causing my symptoms.

gabkad profile image
gabkad in reply tomybabyboy

Not really because you'd have to get frequent phlebotomies.

My ferritin was higher than yours and I only have one gene.

I have been donating blood for the past 2 years. Have not

checked what effect it's had.

My distant cousin was having blood removed monthly for

several years. Now okay. But high iron can cause liver

cancer and heart failure.

So better to not have it.

My maternal grandfather most likely died of it plus

he developed type 2 diabetes and heart failure (also

haemochromatosis related conditions).

I only now found out because of records being available

on line.

mybabyboy profile image
mybabyboy in reply togabkad

My dad died of liver cancer and had chf and type 2 diabetes but it wasn’t confirmed he had the Celtic curse . Mine might just be higher bec of inflammation with hashimotos

gabkad profile image
gabkad in reply tomybabyboy

Or like my cousin, hashimoto's because of high iron.

I guess when your father died, there was no DNA test

available.

The aunt of a friend died of liver cancer. Her body was

absolutely riddled with iron. She was in her mid 50s.

The entire family was tested and his mother also has

two copies. She was getting phlebotomies (visiting the

vampire ;)) every month for several years, now every

three months. Fortunately she's okay.

mybabyboy profile image
mybabyboy in reply togabkad

Hopefully not the case for me, but might explain my symptoms x

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