Results over range - but I feel great - what to... - Thyroid UK

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Results over range - but I feel great - what to do?

PixieElv profile image
45 Replies

Hello lovely people

I need some advice again, please

I’ve been on NDT 3.5 grains for around 5 months now and dose 3 times a day.

I feel amazing. I have more energy, lost the excess weight I put on and generally feel like old self again. I have normal blood pressure 109/79, heart beat 64bpm and normal body temperature, and no side effects I noticed.

However, my Medicheck results show me to be over the range T3 and T4. Tested 12 hours after the last dose. (I have secondary hypothyroidism so TSH is of no relevance)

Is this dangerous? Do I need to lower my dose?

Thank you

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PixieElv profile image
PixieElv
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45 Replies
Jazzw profile image
Jazzw

Well, some would certainly say “dose to how you feel” rather than dose to blood test results. That’s how it always used to be done before blood tests were available after all.

I take it you did the test according the the usual advice here—split your dose, took the last part dose 8-12 hours before the test etc?

You could experiment with dropping a quarter of a grain and seeing if anything deteriorates as a result. I think that’s all it would take to drop your results back into range if you did want to try that?

PixieElv profile image
PixieElv in reply toJazzw

Thank you Jazzw, I will give that a try. Like most of us it took me years to find something that works (NDT does, T4 or T3 didn’t), so I am petrified of going back to being a fatigued, brainfogged, grumpy, blob 😂

And yes, I did the test according to the instructions 12h etc…

Jazzw profile image
Jazzw in reply toPixieElv

See how it goes then. If you want to try the experiment I don’t think it would take more than a few weeks to know whether taking 3 and a quarter grains is your sweet spot. I’m so pleased for you though 🙂 It’s amazing to feel well again isn’t it?

PixieElv profile image
PixieElv in reply toJazzw

It’s like someone has switched on the light inside my soul. 😊 Thank you.

FancyPants54 profile image
FancyPants54 in reply toPixieElv

9 years of struggle and I still feel like shite. Your post makes me want to cry. I am so happy it has worked for you and Jazzw, but so angry that nothing has worked for me and I feel like I'm just slowly dying here. Currently taking 45mcg T3 a day and 50 Levo and don't feel like I'm taking anything.

Jazzw profile image
Jazzw in reply toFancyPants54

Ooh, sadly no—I’m not doing so good at the moment. Ever since the enforced switch to Armour (nature throid still being out of production), I haven’t felt particularly great at all.

So I do get it.

I should read back through your posts to get the history but my gut feel is that maybe that Levo is doing nothing for you. Have you ever tried T3 only?

FancyPants54 profile image
FancyPants54 in reply toJazzw

I'm so sorry. You were one of the success stories. How awful that you can't get the medication that suited you.

I'm only on 50 Levo. That's not much. I reduced from 125 and increased the T3 up as far as 55mcg, even 60 briefly. But nothing ever makes me feel right. I have been toying with switching over to Armour completely as many years ago Dr Peatfield put me on it and for a short time it gave me my life back. But then a load of issues cropped up and I ended up off it again. Chances are it wouldn't work again now anyway as nothing seems to work.

I tried T3 only quite a few years back. On less T3 admittedly, but it made me feel worse not better.

PixieElv profile image
PixieElv in reply toJazzw

Oh Jazzw, I am so sorry. It’s so cruel when you felt well and then it’s snatched away again. Have you tried Efra?

PixieElv profile image
PixieElv in reply toFancyPants54

I am so sorry! I know how you feel, as I wasted a good 5 years of my life feeling shite…Have you tried NDT only? I didn’t improve until I took NDT only. Levo and T3 were not for me

Suzannah17 profile image
Suzannah17 in reply toPixieElv

How did you manage to get NDT??

PixieElv profile image
PixieElv in reply toSuzannah17

Though my private Endocrinologist. He prescribes it 😊

adin profile image
adin

Hi, may I ask you what kind of ndt you take?

PixieElv profile image
PixieElv in reply toadin

I take Efra 3.5 grains

adin profile image
adin in reply toPixieElv

You are very good numbers, last time when I took 3,5 grains of NDT(Thyroid-s from Thai), FT4 was below the line and ft3 in the middle, so I didn't feel ok. I have long thought to try with Erfa maybe I get better values.

PixieElv profile image
PixieElv in reply toadin

I’m worried that’s too high and whether I am doing myself damage.

My Efra is from the UK on private prescription. Might that make a difference?

Brightness14 profile image
Brightness14 in reply toadin

I only take 2.5 grains of thyroid s and for the past 6 plus years have felt well, without a thyroid. I was over the FT3 higher number but reduced slightly from 3 to 2.5 grains.

adin profile image
adin in reply toBrightness14

I don't understand why thyroid s not suit me, my ft4 was below range ar 3,5 grains, I weight gain and my right knee hurts.

Brightness14 profile image
Brightness14 in reply toadin

You may be allergic to the filler. I take 1 grain at 6am another at around 2pm and half at 9pm. Well away from food.

greygoose profile image
greygoose

If it were me, and I felt that good, I would leave well alone.

Remember, a blood test is exactly what it says it is: a measure of what's in the blood. Thyroid hormone in the blood doesn't do anything. It has to get into the cells to have any effect, and there is no way of measuring what gets into the cells. By the look of your levels, and how you say you feel, I would guess that not all of that hormone is getting into the cells, and you need your levels slightly over-range to get enough into the cells.

Remember, ranges are only a rough guide, not cast-iron rigid cut-off points that you mustn't go over. We're all different and all need different levels of thyroid hormone in our blood.

Remember, thyroid bloods when on thyroid hormone replacement, are not like other bloods where you're measuring what your body is doing. You're not checking to see if your liver is behaving itself, or whether your blood is too thick. You are measuring if you are putting enough exogenous thyroid hormone into your system. But, the best way of testing that is by the way you feel. You feel great, so one cannot help feeling that you're getting it right. :)

PixieElv profile image
PixieElv in reply togreygoose

Aww Greygoose, thank you. That makes me feel better. It’s such a minefield and you don’t know if you’re doing yourself any damage.

Not sure how my private Endo is going to react to this though? I am not sharing the results at the moment, but will have to have share some at some stage…

greygoose profile image
greygoose in reply toPixieElv

Well, good luck with that. Does he prescribe what you're taking? Or do you buy your own? If you buy your own, you don't have to reduce it on his say-so.

PixieElv profile image
PixieElv in reply togreygoose

He prescribes. Am I able to buy it without prescription? If so, could you DM me how/where please? Thank you

greygoose profile image
greygoose in reply toPixieElv

You can get it on-line without a prescription, but I've no idea where. You'd have to write a new question asking people to PM you their trusted sources.

If he prescribes your Erfa, he should know that T3 suppresses TSH. That's just what it does, what it's meant to do. :)

PixieElv profile image
PixieElv in reply togreygoose

He does. He’s been really great. My Endo might even be ok with overrange. He really is a find (from this forum)

It’s my GP who’s needs educating every time. My Endo writes the SAME thing in his letter to her but she still questions it 🙄

greygoose profile image
greygoose in reply toPixieElv

Oh, some GPs are a pain! Think they know everything, but actually know nothing at all!

PixieElv profile image
PixieElv in reply togreygoose

What i dont get is why they can’t then just accept a consultant’s opinion/ some kind of bruised ego?

greygoose profile image
greygoose in reply toPixieElv

Possibly. I don't know.

DippyDame profile image
DippyDame in reply toPixieElv

Medics have to respect Patient Autonomy!

bma.org.uk/advice-and-suppo...

PixieElv profile image
PixieElv in reply toDippyDame

😂 they really don’t abide by that though, do they?

jgelliss profile image
jgelliss in reply togreygoose

👏👏👏👏

DippyDame profile image
DippyDame

If you feel good I would say, don't change your dose.I need high dose T3 to function (currently 100mcg) and my TSH and FT4 have dropped off the range and my FT3 is in orbit....no signs of killing me because I have a form of Thyroid Hormone Resistance and need a high dose to get enough T3 into the nuclei of the cells where it becomes active.

It's only a problem if too much T3 reaches the nuclei of the cells

The T3 is the blood is inactive.

There is no way to measure this so we must rely on signs and symptoms

Some of us just need more replacement hormone because our body works slightly differently.

Treat the symptoms not the numbers!

Refuse to be dosed by TSH

Your signs and symptoms sound fine and when we introduce T3 they are the important guides.

Hope that makes sense...it's late and my brain is ready for sleep!!

PixieElv profile image
PixieElv in reply toDippyDame

Thank you. I have secondary hypothyroidism, so TSH is of no relevance anyway. i have to explain that to my GP EVERY SINGLE TIME. Luckily my Endo is on board 😊

CaptainBeOS profile image
CaptainBeOS

There are risks of being hyper and therefore being over dosed. There are also benefits.

The key published risk is involved with hyperthyroidism is heart rate. However there have been a few medical papers recently that correlate increased heart rate with fT4 levels rather than fT3. Also taking T3 has been shown to improve cardiac output and reduce heart rate in congestive heart failure. On this forum many people report improve (reduced) heart rate with more T3 and less T4. So the take away is that a slight overdose of T3 is more beneficial than harmful to your heart rate. If your heart rate is in the 60's and BP is good then I would suggest that your dose is fine in this respect.

The other notable risks I have come across include:

1) Increased uric acid levels. Which is a bizarre one as you get this on the hypo side too. In this instance scientists reckon it's because of increased cellular metabolism. On the hypo side is due to decreased kidney function. Just be aware that can lead to gout, which believe me sucks. So do occasional checks on uric acid and take any remedial steps with your diet if it goes high. Avoid Allopurinol, it messes with thyroid hormone transit and hormone levels

2) Decreased bone density. This has been found to happen in cases of severe hyperthyroidism. Doctors therefore get iffy if your bloods are over range because of this. Though actually there is, I understand, no evidence to back this concern up for mild hyperthyroidism. It would however be prudent to check this out from time to time.

Benefits:

1) Reduced risk of heart failure has been found in mild hyperthyroidism. Increased risk in hypothyroidism. (Risk increases again in severe hyperthyroidism along with stroke)

2) Improved kidney function.

3) Reduced risk of cancer. Apparently cancers love feeding on T4, but are suppressed byT3. T3 is currently being trialed as a cancer treatment.

4) Greater longevity has been noted in people with higher T3 to T4 ratios.

5) Reduced risk of Non alcoholic fatty liver disease. Yep, your liver will break down fat better. Hence the weight loss.

Benefits out weigh the risks in my opinion.

Bearo profile image
Bearo in reply toCaptainBeOS

Interesting. When you say hyperthyroid, you mean that condition, not over medicated hypothyroid that has some symptoms of hyperthyroid?

CaptainBeOS profile image
CaptainBeOS in reply toBearo

Hyperthyroidism generally means the sate of having too much thyroid hormone irrespective of how you got there. I.e. Overactive thyroid, Thyroid nodule, over medicated underactive thyroid or over medicated thyroidectomy. So, yes that includes your case.

For mild or subclinical hyperthyroidism to apply you would be at or around the top end of the reference range and you would not be experiencing any adverse symptoms. E.g. headaches, high blood pressure, heart palpitations, cramps, tremors, mood swings etc.

PixieElv profile image
PixieElv in reply toCaptainBeOS

Do you think with my results (posted at the top) I qualify or mild? Obviously not subclinical as they are out of range.Thankyou

CaptainBeOS profile image
CaptainBeOS in reply toPixieElv

Probably.

But, as everyone else has said, if you feel fine, go with it. The reference ranges are a guide and nothing more. People live happily outside of these ranges all the time. Every one is tuned differently.

DippyDame profile image
DippyDame in reply toBearo

Important point Bearo

The lazy use of the term "hypo" when people actually mean overmedicated is misleading.This disease is bad enough without people being further confused by semantics.

PixieElv profile image
PixieElv in reply toCaptainBeOS

Wow! Thank you. Both for the really interesting information and for your time. I really appreciate it 😊 This is super interesting. My BP is bob on always around 110-75ish and HR is in the low 64s, so I’m not worried about that. Incidentally It was a bit raised on Levo only…Have you come across the Thyroid eye? I’ve heard that if you are hyper you can develop eye disease?

CaptainBeOS profile image
CaptainBeOS in reply toPixieElv

That's linked to Grave's disease. It's when the muscles around the eye contract giving the appearance of bulging / bug eye's. (A Sylvester Stallone look). It's caused by too much thyroid hormone, but in Grave's disease we are talking about levels that are in orbit.

tattybogle profile image
tattybogle in reply toCaptainBeOS

..TED not caused by the high T4/T3 levels .. it's cause is the action of TRab (Thyroid Stimulating Hormone Receptor antibodies )on the TSH receptors in those tissues in the eyes ( muscles ? i think , but have forgotten precisely where )

You will come across an occasional case of hashimoto's (hypo) with TED. because they also happen to have some TRab .... a small % of hashimoto's patients do also have some TRab.

tattybogle profile image
tattybogle in reply toPixieElv

Thyroid Eye Disease TED is usually associated with Graves disease ( hyperthyroidism ) . The same antibodies (TRab ) that stimulate the thyroids TSH receptors in Graves Disease can also stimulate the TSH receptors in some tissues (muscle?) in the eye. (don't ask me why those bit's of the eye have TSH receptors .lol ... but they do )

So hyperthyroidism/ thyrotoxicosis from some other cause that doesn't have those antibodies like eg. a 'hot' nodule / or overmedication with thyroid hormone doesn't cause TED .

It's not the high T4 or T3 levels that cause it .. it's the TRab antibodies ~ Thyroid Stimulating Hormone Receptor antibodies.

However it is possible to have TED without having Graves, a few people who are autoimmune Hypo (Hashimoto's) can get it IF they also happen to have some TRab antibodies .

PixieElv profile image
PixieElv in reply totattybogle

Thank you. That is really reassuring. How are you so knowledgeable? I am in awe…

tattybogle profile image
tattybogle in reply toPixieElv

Got 20 yrs of my old thyroid blood results from GP records , and tried to figure out for myself what had been going on and how , cos i needed to argue my case with a GP who insisted i'd die if i didn't reduce my dose like he wanted, ....because when i did try it,, it made me unwell . So i did some research on low TSH and risks from actual papers , not just what the NHS said, or people on forums said .. and then found my way here and read old posts for 6 months till i plucked up enough courage to say hello to anyone ... then there was that pandemic thing that buggered up all my jobs at festivals ..., so i retired and have sat happily on my ass in the conservatory for the last 2 years, and read most of what passes through here .and when i need to, i go here thyroidpatients.ca/home/sit... to find a diagram to help me understand the complicated bits . ... simples .. all you need is "not having a proper job" and a laptop. and an interest in how things work ... and the realisation that the best person to treat your hypothyroidism is going to be ... you.

PixieElv profile image
PixieElv in reply totattybogle

Love it! 😂 You are very funny 😊 And good for us you do! X

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