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Hyper and Hypo simultaneously?

PapiGirl profile image
54 Replies

Hi

Here's a quick brief about my thyroid story:

I was diagnosed in 1995 with hypothyroidism, eventually taking 125mcg daily, 875mcgs weekly. Went on to develop Hashimoto's and in 2014 diagnosed with Papillary Cancer. Had TT in 2014, yearly check ups and bloods, dosage increased to 150mcg, 1050mcg a week, suppression treatment.

Now tens years all good and clear. Now I'm 58, menopausal, exercise and eat healthy. No dairy, I'm have lactose issues and ibs and I'm a Pescatarian. I take vit d3, vit K2 and Mega B supplements.

My oncologist and GP know I've reduced my thyroxine. I now take five days 150mcgs and two days 100mcgs, weekly total 950 mcgs.

Recent bone scan showed is my bone was slightly thinning and my hair has become thin and this is concerning me.

I take my thryoxine after I have my bloods. These were my results:-

FT4 22.5

TSH: 0.02

T3: 5.0

aTGII: 1.3

aTPO: 61

Adj Calcium 2.25

Since dropping thyroxine, Ive gained about 3kg, still in ideal range but heavy for me. I feel some days my get up and go has got up and gone and my depression can be a nightmare!!

I know the mechanic of the body and thryoxine is so complex and different for everyone. I just feel at a loss whether to drop my meds further or just be grateful with my situation?

So what should I do?

Thanks PapiGirl

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Jaydee1507 profile image
Jaydee1507Administrator

Please add reference range for each test - numbers in brackets after your result. Ranges vary between labs so are important.

How are you taking your blood test?

What time of day? TSH is highest at 9am or earlier.

When was your last dose of Levo? Recommended timing is 24hrs.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

What are your latest results for ferrtin, folate, B12 & D3?

Low ferritin is often implicated with hair issues.

PapiGirl profile image
PapiGirl in reply to Jaydee1507

Hi

My blood levels are within the laboratory range of pmol/l, except my TSH were the range is 0.40 - 4.00 mIU/L.

I take my bloods fasting and in the morning and I as stated before taking any medication or supplements.

I had a full blood panel which including the ones you were asking about. And all levels were excellent, including all levels of iron.

The only level that is different to the ranges are the TSH which is being suppressed due to my cancer diagnosis.

My question really was shall I continue with suppression treatment in the hope it helps my bone thinning and hair?

PapiGirl

Jaydee1507 profile image
Jaydee1507Administrator in reply to PapiGirl

I'm just trying to assess if you are optimally treated thyroid wise so we need to know whereabouts your result falls within the range. Just saying that they are within range means nothing.

Can you share your exact vitamin results?

We need OPTIMAL levels of key vitamins for our thyroid hormone to work well.

I'm looking for any issue that might cause problems with your hair amongst many other things.

PapiGirl profile image
PapiGirl in reply to Jaydee1507

I'll post my bloods results asap👍

greygoose profile image
greygoose

Hi PapiGirl, welcome to the forum. :)

My question really was shall I continue with suppression treatment in the hope it helps my bone thinning and hair?

TSH doesn't help with anything. It is low because your FT4 is high - although how high we cannot possibly know without the range - and your FT3 is high-ish. The most important number is the FT3.

Ranges vary from lab to lab so it is important to give us the ranges that came with your results if you want us to interpret them for you. Just telling us that the results were 'in-range' tells us nothing because the ranges are so wide.

The reason for keeping your TSH - Thyroid Stimulating Hormone - suppressed to so as not to stimulate and traces of thyroid tissue that might remain and cause the cancer to return. That's all it does. Your thinning bones and hair are probably due to your T3 not being high enough for your needs. It would seem that you are a poor converter and would probably benefit from a little T3 added to a reduced dose of levo.

It's good that you're taking vit D and vit K2 because they are very important for bones. But, are you also taking magnesium? Vit D and magnesium work together so the vit D won't do much for you without it. Magnesium is also extremely important for bones.

Hyper and Hypo simultaneously?

Why the title? If you don't have a thyroid you cannot be hyper. Hyper means that your thyroid is producing too much hormone. Without a thyroid you are hypo. You could be over-medicated but that's not the same thing. And you are a little over-medicated with levo, which is not a good thing, but you are not hyper. :)

PapiGirl profile image
PapiGirl in reply to greygoose

Thanks for welcoming to the group 😊 Yes don't I know ranges are different, I just don't understand why? The reason for the title is sometimes my symptoms are like being hyper because I'm taking too much thyroxine.

Funny you say about Magnesium, I take Fusion Magnesium to help menopausal symptoms.

I've always thought I'm bad at conversion due to ibs and lactose issues. I used to take selenium but stopped because a GP told me.

Jaydee1507 I'll get my blood results and post them, thanks for the information 👍

PapiGirl

SecondAngel profile image
SecondAngel in reply to PapiGirl

I'd add to greygoose's comment explaining hyper/hypo/overmedicated to say that some symptoms fall in to both over or undermedicated (or hyper/hypo) lists so that adds complexity.

greygoose profile image
greygoose in reply to PapiGirl

Ranges depend on two things:

- the calibration of the machine used to analyse the blood

- the average levels of the local population.

The reason for the title is sometimes my symptoms are like being hyper because I'm taking too much thyroxine.

You are taking to much levo - or rather you aren't converting it correctly so it's building up - but that doesn't make you hyper. And many, many symptoms can be both hypo and hyper symptoms, so it can be difficult to tell.

I've always thought I'm bad at conversion due to ibs and lactose issues.

I'm not sure there's any connection - or are you confusing conversion with absorption? You seem to absorb ok.

I used to take selenium but stopped because a GP told me.

Rule n°1: never, ever take nutritional advice from a doctor! They know nothing about it but have some very funny ideas and prejudices.

Did the selenium help?

PapiGirl profile image
PapiGirl in reply to greygoose

Yes absorption! I read that gut issues can cause problems. I think Selenium did help. I did feel better, more alert.What's your opinion on Ashwaganda? I was taking it for my depression and when I had Hashimoto's but now after TT, I'm sure?

greygoose profile image
greygoose in reply to PapiGirl

OK, but as I said, you seem to absorb well, because you have more T4 than you need.

Thing with selenium, you need to take a break from it from time to time, perhaps that's what he meant, not stop it forever?

Ashwagandha is an adaptogen, and adaptogens in general do not suit me. But it's a very individual thing. They don't have so much effect on the thyroid, generally, but they can reduce cortisol levels, which might or might not be a bad thing. Did it help with your depression? Do you know your cortisol level?

PapiGirl profile image
PapiGirl in reply to greygoose

I'm glad my absorption is ok. How can you tell, my conversion isnt?

Dr said not too take selenium supplements but I eat Brazil nuts instead, not in excess though.

The Ashwaganda did help my depression and I felt calmer too. Never had cortisol levels checked but I do stress.

greygoose profile image
greygoose in reply to PapiGirl

To see how well you convert you get the FT4 and FT3 tested at the same time, then calculate the percentage of each through their respective ranges and compare.

I can't work out your percentages because you still haven't given the ranges. But, at 25 your FT4 has to be over-range - all the ranges I've seen, anyway - and at 5 your FT3 is probably about mid-range? So, the gap between the two is too large. The FT3 should be just slightly lower than the FT4 if you convert well.

Do you know if your Brazil nuts were grown in selenium-rich soils? Not all Brazil nuts are created equal. And you shouldn't eat more than two a day.

If ashwagandha calmed you then your cortisol was possibly high, and the ashwagandha reduced it. :)

PapiGirl profile image
PapiGirl in reply to greygoose

Thank you, I didn't know that about Brazil nuts, I only have one 👍

greygoose profile image
greygoose in reply to PapiGirl

You're welcome. :)

PapiGirl profile image
PapiGirl in reply to greygoose

I have my blood results, hope they upload ok? I have seven in total...

Thyroid levels
PapiGirl profile image
PapiGirl in reply to PapiGirl

Thyroid antibodies..

Thyroid antibodies
PapiGirl profile image
PapiGirl in reply to PapiGirl

Iron levels

Iron levels
PapiGirl profile image
PapiGirl in reply to PapiGirl

Vitamin D level

Vitamin d
greygoose profile image
greygoose in reply to PapiGirl

Could be higher but fine as it is.

greygoose profile image
greygoose in reply to PapiGirl

The antibodies are irrelevant because you no-longer have a thyroid. And in any case, you already knew you had Hashi's so no point in retesting them.

greygoose profile image
greygoose in reply to PapiGirl

FT4 22.5 (9-25) 84.38%

FT3 5 (3.5-6.5) 50.00%

So, that shows very clearly that you are a poor converter. A gap of over 30% is much too wide. If you were a good converter it would be 5 - 10% or even less.

But, the solution is not to add more levo. Your FT4 is quite high enough and taking it higher can make your conversion worse rather than better. If you look at your results from 21/03/23 the gap is 65.42%

FT4 31.2 (9-25) 138.75%

FT3 6.7 (3.5-6.5) 73.33%

And having an FT4 so high long-term can increase your risk of all cancers. As you've already had one cancer that's not a risk you want to take.

So, the solution is adding T3 to a reduced dose of levo. Quite how you'd convince your GP/endo of that, I don't know. But whether you get it prescribed or self-sourced, that is what you need.

PapiGirl profile image
PapiGirl in reply to greygoose

Yes I know it going to be hard convincing my Dr to prescribe T3 when my levels are 'in range' But I'm going to have a chat with her, I can't go on with feeling so exhausted!Thanks for replying, appreciate all your advise👍

greygoose profile image
greygoose in reply to PapiGirl

Yes, but she's got to understand that it's not just about being 'in-range'. It's about being in the right place within the range to make you well. And, whilst your FT3 is good, it takes far too much T4 to get it to that point. And that's not good. You absolutely need to reduce your levo. But, if you do that, your FT3 is also going to drop. And that's really not good because you're a poor converter. So, you need less levo and T3 added.

However, I fear that all that will go way above her head. :(

To find a good source of T3, write a new post asking people to PM you links to their trusted sources. We are not allowed to discuss sources on the open forum.

If someone replies with a link, check it out with an admin to make sure it's not a scam.

healthunlocked.com/thyroidu...

PapiGirl profile image
PapiGirl in reply to greygoose

Where do you get self- source T3 from?

PapiGirl profile image
PapiGirl in reply to greygoose

I posted my bloods, what do you think?

greygoose profile image
greygoose in reply to PapiGirl

There's nothing there that directly concerns thyroid. But your sodium is a bit low.

PapiGirl profile image
PapiGirl in reply to greygoose

My Sodium level is 139 (135 -145 mmol/L) I don't have symptoms of low sodium. Should I be concerned?

greygoose profile image
greygoose in reply to PapiGirl

Not concerned exactly, but the adrenals do need that sodium - well, salt, actually. So just try putting more salt on your chips! :D

PapiGirl profile image
PapiGirl in reply to greygoose

Ok, I can certainly do that😁

Indigourchin profile image
Indigourchin in reply to greygoose

Hello, just reading through these replies i notice greygoose you say magnesium should be taken with Vitamin D. Does that mean at the same time? i take Magnesium L-threonate and have found it beneficial but i take it in the evening and Vit D and K2 in the morning? Many thanks

greygoose profile image
greygoose in reply to Indigourchin

Not necessarily, no. It means that if you're taking vit D, you must also take magnesium at some point in the day, or the vit D will deplete your magnesium. And that's not nice! Taking it at night is fine. :)

Indigourchin profile image
Indigourchin in reply to greygoose

Thank you Greyhoose for the clarification, much appreciated

greygoose profile image
greygoose in reply to Indigourchin

You're welcome. :)

pennyannie profile image
pennyannie

Hello PapiGirl and welcome to the forum :

Just to add - a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.

T4 - Levothyroxine is a pro-hormone and needs to be converted in your body into the active hormone T3 that runs all your body's functions and the thyroid gland synchronises how the thyroid hormones T3 and T4 are used and metabolised within your body to support you physically. mentally, psychologically, emotionally and spiritually - and the controller of your inner central heating system and your metabolism.

When hypothyroid the body struggles to extract key nutrients through food no matter how well and clean you eat and we also need good calories for good T4 to T3 conversion.

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels - I now aim for a ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 - 500 ++ ) - and vitamin D around 125 :

Just being somewhere in a range is not optimal - and living without a thyroid needs maintaining yourself as the NHS generally only prescribe / comment when you are not ' in the range ' and some ranges NHS ranges are too wide to even be sensible.

We generally feel best if on T4 monotherapy - when the T4 is in the top quadrant of its range with the T3 tracking slightly behind at around 60/70% through it's range - and the conversion ratio of T3/T4 being around - 1/4 - T3 / T4.

Some people can get by on T4 monotherapy :

Others find that T4 seems to stop working as well as it once did - and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - their T3/T4 thyroid hormonal balance is restored, their metabolism ' kicks in ' again and their health improved.

Some can't tolerate T4 and need to take T3 monotherapy - Liothyronine.

Whilst others find their health restored taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids, dried and ground down into tablets, and referred to as grains.

So first off - in order to help you better we do need a full thyroid panel to include a TSH - Free T3 - Free T4 - inflammation, antibodies and ferritin, folate, B12 and vitamin D set of results and ranges.

If you doctor can't help you there are Private blood test companies listed within the Thyroid uk website - thyroiduk.org - and we can talk you through what it all means - the blood tests is around 10 analysis and called an advanced / full thyroid blood test .

It is a bit of a jigsaw but once you get hold of a corner piece or two things start to fall into place and this just the first of the stepping stones to be run in order to take back some control of your health and get back your ' you ' ;

PapiGirl profile image
PapiGirl in reply to pennyannie

Thanks for your reply, it's definitely a jigsaw puzzle trying to figure out what I should be taking to help my body cope with no thyroid.I live in Australia but originally from UK. I have had full thyroid panel bloods done which include those you mention. I'll post the results and ranges soon.

Ive always felt that if my levels fit in the ranges, whatever they are, that the drs are quite happy even when you feel crap.

I appreciate you taking the time to help me☺️

pennyannie profile image
pennyannie in reply to PapiGirl

Oh yes - anywhere in the range and it's job done !!

It's all so totally ridiculous as we need fine tuning of our body and T3 and T4 levels -

just as a car mechanic would fine tune a sports car -

though we are deemed ' good to go ' with no gears and worn out tyres !!

Ok then - no worries - I'll watch out for your next post and suggest a MOT service that you can do most of for and by yourself and doesn't need a spanner !!

PapiGirl profile image
PapiGirl in reply to pennyannie

I'm definitely a sports car that just needs a bit of adjustment 😁It's bedtime here in Australia so tomorrow I'll sort the blood results 👍

pennyannie profile image
pennyannie in reply to PapiGirl

Okey doke - parked up Porsche :

pennyannie profile image
pennyannie in reply to PapiGirl

Looking at the blood test without ranges which I forgot to comment on:

The accepted conversion ratio when taking T4 only is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best ,and metabolising, when they come in this ratio at 4 or under :

So if I divide your T4 by your T3 reading I'm getting your conversion ratio coming in at 22.50 ~ 5.00 at 4.50 - showing your conversion of T4 into T3 slightly wide of centre - it's not awful - I've seen a lot worse - including my own - so better start now looking into things before you slide further out and collecting more symptoms of hypothyroidism.

pennyannie profile image
pennyannie in reply to pennyannie

OK - so now looking at the blood test with the ranges :-

Your T4 is in the range at around 84% with your T3 coming in at around 50% through it's range :

You T3 has been dropping throughout these last few yearly blood tests - it has drifted down from 6.7 and slightly over range - to 5.60 and now this year 5.00 and likely you are struggling to keep up with everything - as now your metabolism is slowed a little too much - hence some symptoms of hypothyroidism creeping in.

So there is room to increase T4 - which in turn will hopefully increase your T3 a little - but I wouldn't suggest this as having a high T4 comes with its own health risks.

Your vitamin D is good, ferritin needs a little work to tip over 100 and have I missed / can't see a B12 and folate result ?

Once vitamins and minerals are optimal you may find your conversion improves -

but I think it logical since you have lost your thyroid, and lost that initial T3 that your thyroid once supported you with - that adding in a little Liothyronine to your thyroid hormone replacement prescription the next step.

What thyroid hormone replacement options do you have in Australia ?

I listed them all above in my initial reply ?

P.S. I can't see that these TPO antibodies have any bearing on your symptoms being experienced - you still have some circulating in your blood but I do not think this of any consequence as you have had a thyroidectomy and your thyroid now, not in situ.

PapiGirl profile image
PapiGirl in reply to pennyannie

Thanks for replying, I'll upload the B levels but I couldn't find my folate results. My TPO antibodies were done yearly for ten years, part of the protocol testing for TPC. They're all good now, which is good.

How do I increase my Ferritin levels?

I did ask my Dr about T3 once, might have a chat with her again, unsure what is available in Australia?

Vitamin B levels
PapiGirl profile image
PapiGirl in reply to PapiGirl

I also have some other blood results..

Other bloods
PapiGirl profile image
PapiGirl in reply to PapiGirl

More blood results..

More bloods
PapiGirl profile image
PapiGirl in reply to PapiGirl

Liver function tests, first time my Albumin levels have been within range.👍

Liver function tests
pennyannie profile image
pennyannie in reply to PapiGirl

So all in range - I think - but I can't comment as I do not have enough insight or knowledge on the above blood tests :

Just staying in ' my lane ' is enough !!

pennyannie profile image
pennyannie in reply to PapiGirl

OK - so that looks like a serum B12 reading at 689 -

and in the UK we aim for 500 ++ as our range is 200-900 pg/ml -

don't understand as the range given looks more like Active B12 than serum ?

Include some liver or more meat in your diet or if vegetarian look to increasing kidney beans, chick peas and lentils - dried apricots, and leafy dark green vegetables such as watercress, broccoli and spring greens.

Just out of interest we advise stopping all supplements around a week before having a blood test so we then measure what your body is holding - rather than that just ingested ?

Similarly when you have thyroid function test you should fast over night, just taking in water, have a blood draw by around 9.00 am and then take your T4 medication for that day - so taking the blood draw having left around a 24 hour window from your last dose of T4 :

Is this how these blood tests have been done - though looking at your results they seem to make sense as they stand, and it's also important to maintain the same routine year on year in order to read and follow the pattern emerging.

The difference being if taking the T4 within a few hours of the blood draw your T4 will be a false high reading which will likely show over range and a dose adjustment down is suggested - when not really called for.

PapiGirl profile image
PapiGirl in reply to pennyannie

The blood tests that were done in December 2023 and March 2024, I took my thyroxine and supplements, after the test. Before that, Id always taken thyroxine and supplements about four hours before bloods drawn. That's probably why Id felt so crap even though my results were within the ranges, false high results!!I'm a Pescatarian, so I eat fish, mainly salmon, tuna, mackerel and sardines are my go to. I eat eggs, pulses, good fats and some cheddar cheese and greek yoghurt. I'm no Saint and do have lapses but I pay for it!!

I do worry about the health risk of suppression treatment, bone thinning, heart palpitations, sweating to name a few. That's why I told my Dr I was reducing my thyroxine. And now Im coping with hypo symptoms, it's exhausting!!

pennyannie profile image
pennyannie in reply to PapiGirl

If you decide to take any other treatment option - it will contain T3 - and will likely suppress your TSH anyway.

Without a thyroid we need to balance the T3 and T4 readings and find our own set point of metabolism for ourselves.

We have no thyroid gland and now on manual daily dosing of thyroid hormone replacement and the automatic new daily production of T3 an T4 thyroid hormones that the thyroid once managed for us - now gone.

I believe there is a very big difference between running with a low/suppressed TSH when with a thyroid -

and running with a low/suppressed TSH when without a thyroid, and taking thyroid hormone replacement and wanting to be optimally medicated and have your life back and your body metabolising and regenerating itself ' as normal ' :

A revved up thyroid - running too fast indefinitely results in a revved up engine, going too fast, and using up fuel faster than normal - which will of course speed up every system in your body, including depletion of vitamins and mineral resulting in not being able to support good repair and regeneration of every bodily function that faces a continual process of repair and renewal.

Just as running a car in perpetual overdrive would damage the engine.

Hope that makes sense =

and as for research into low/suppressed TSH and bone density I think the jury now out - but can't find the links at this point in time.

PapiGirl profile image
PapiGirl in reply to pennyannie

Is just so complex!! I have read that TSH suppression does cause bone thinning. My Dr doesn't seem too concerned, she was ok with my Dexa scan results.It does make sense and I really appreciate all the information you have given me.

pennyannie profile image
pennyannie in reply to PapiGirl

Yes - you will read that - is there a caveat for people taking thyroid hormone replacement and without a thyroid ?

You are being well monitored and supplementing nutrients where necessary and with a Dexa scan so any issues will be picked long before anything untoward happens -

look at getting well and getting back to being that ' sports car ' and enjoying your life - rather than worry about what may or may not happen 20 years down the road :

No worries - park the Porsche - it's time you were in bed .

PapiGirl profile image
PapiGirl in reply to pennyannie

Thank you, I deleted my previous post, might have copyright or something. I've parked the Porsche, night💤

pennyannie profile image
pennyannie in reply to PapiGirl

Yes I replied and it wouldn't send :

No worries - sweet dreams :

gabkad profile image
gabkad

Are you on HRT?

I'm 66 years old, been on HRT since age 45 even though my LMP was at age 52. Both the HRT and eating quality protein (over 0.8 grams per kg per day) has ensured that I have high normal bone density. Bone cells have estrogen receptors. When estrogen levels fall after menopause, this predisposes to osteoporosis.

I think vitamin K2 ingestion should be higher than a few micrograms per day as what is available in D3/K2 combos. I use Jarrow K Right but have also used Carlson 5 mg Menatretanone which is the form used in Japan at 45 mg per day for osteoporosis.

PapiGirl profile image
PapiGirl in reply to gabkad

HiI'm on estrogel gel, one pump nightly which has helped and I take a Magnesium complex at night, which has improved my sleep.

I take Vit K, Caruso Brand, 90mcg daily, along with VitD3 1000iu and a Mega B complex too.

My GP is very good, she specialises in Womens Health. She explained that bone density reduces after menopause, then levels out. That's why I'm concerned that taking too much thyroxine will make the bone loss worse.

My Dexa bone scan was good as was my calcium levels. I do strength training three times a week and lots of walking!

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