any tips to help with conversion?: I have all the... - Thyroid UK

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any tips to help with conversion?

Goinginsane1 profile image
24 Replies

I have all the symptoms of too much levo, but also symptoms of not enough.

What can I do to help improve the conversion please?

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Goinginsane1
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SeasideSusie profile image
SeasideSusieRemembering

What can I do to help improve the conversion please?

Optimal nutrient levels:

Vit D: 100-150nmol/L

B12: top of range for serum B12, if testing Active B12 then 100 plus

Folate: at least half way through range, if no range and just says >2.89 or >3.89 then aim for double figures of high teens

Ferritin: some experts say the optimal level for thyroid function is 90-110 ug/L

Selenium is said to help conversion.

Goinginsane1 profile image
Goinginsane1 in reply to SeasideSusie

thank you.

DippyDame profile image
DippyDame

I'd suggest your problem is low FT3 caused by poor conversion.

For good health every cell in the body needs to be flooded with T3....so an adequate and constant amount is essential.

Your FT3 is sitting at only 32.43% through the ref range.

For good health both Frees need to be approaching 75% through their respective ranges

in contrast your FT4 is sitting at 139% so clearly overmedicated!

High FT4 with low FT3 = poor conversion

Little wonder you feel unwell

Firstly work to optimise essential nutrients as SeasideSusie explains

But, you need to ask to be referred to an endocrinologist who should ( if they are on the ball!) prescribe T3

Medics are possibly only checking TSH which is not a reliable marker.

It is a pituitary, not a thyroid hormone. It reflects the overall hormone level in the blood....not the level of each Free i.e FT3 and FT4.

That high FT4 is very likely just metabolising into reverse T3 and doing next to nothing to improve your health

In their ignorance medics often refuse a med change based only on TSH.

Answer to your question above...

You need less levo with initially, the addition of a little T3.

You may need to argue your case with medics....but be ready by making notes as to why you need T3

thyroidpatients.ca/2018/09/...

Good luck!

Goinginsane1 profile image
Goinginsane1 in reply to DippyDame

thank you. I have been asking and asking to be referred to an endocrinologist for months if not a year or 2 now coz I’m saying it’s not been right all that time. But because the TSH has been within normal range and they won’t check anything else they refuse. Even after my private blood results as seen here, they have refused to refer me. Causing me even more anxiety!

They say I need to address my anxiety first before anything else. So I am being forced to take some sort of medication for anxiety now although haven’t started any yet.

How can I get T3? Does it have to be an endocrinologist to prescribe it?

What am I to do? 😐

I feel so unwell. I have all the symptoms of too much thyroxine and now I have symptoms of not enough including hair loss and my heart doesn't feel right either since lowering it from 75 to 62.5.

Now I am thinking I have to put it back up to 75, but then a whole range of issues will return, that went when I lowered it to 62.5 including swollen fingers, downstairs area, a constant bad middle back, weeing in the night and more.

I keep saying to drs I am stuck between a rock and a hard place. I am so unwell and so fed up as it’s been almost 2 years now since having my baby.

DippyDame profile image
DippyDame in reply to Goinginsane1

Suggest you speak to your GP practice manger and make a complaint about your treatment....or lack of it!

Politely but firmly repeat your request to see an endo.... or they may have a very ill patient on their hands.

Can you take someone with you while you discuss this or see a GP... husband maybe?

Say you are not being listened to, according to the rules of good medical practice that follows...

gmc-uk.org/ethical-guidance....

Point out that you can provide evidence that shows you need to be medicated with T3 including the following and the link I gave you above.

The authors are eminent in the field and not to be brushed aside!

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

Symptoms are supposed to be considered during diagnosis....I doubt yours are given cognisance!

Anxiety is a text book example of a symptom hypothyroidism

This list gives the many symptoms resulting from the condition...tick them off. It's all there as evidence!

...including palpitations

thyroiduk.org/if-you-are-un...

The heart needs a good supply of T3......yours is not receiving this

thyroidpatients.ca/2018/07/...

You are being patronised by medics who are clueless...or lazy

There's a lot of reading here but knowledge ( that can be verified) is power!

You ask...What am I to do?

This is my suggestion!

The whole system of thyroid care is in a monumental mess.

Keep at them, you deserve much better than this!!

Goinginsane1 profile image
Goinginsane1 in reply to DippyDame

I have been telling them and telling them for months going on 2 years that I need a referral to endocrinology but they refuse and say I need to address my anxiety. I am talking to a brick wall and when I say I have anxiety because my thyroid is not right they just ignore me. I’ve even changed surgeries to see if they will help me but they are refusing to refer me too 😡 I am going to contact them again this week I think and see if the dr at a&e week before me last told them to refer me and see if they have actually done so.

Is taking T3 a good option for me (does that come with its own issues?) or should I try and increase vitamins and see if that helps? And should I start anxiety medication or will this mess it up even further? I really don’t know what to do for the best and I am really not well and haven’t been for almost 2 years now 😞

DippyDame profile image
DippyDame in reply to Goinginsane1

I could barely function at my worst, so I sympathise....took me decades ( yes, decades) to get to the bottom of my thyroid problem.

As I suggested, speak to your practice manager asap...they have considerable clout...and they will be able to tell you if there has been communication from A&E.

Optimising nutrients is essential but unlikely to resolve this misreably low FT3

In your shoes I certainly wouldn't start anxiety medication ....but that is your choice to make

I'm not a doctor so not in a position to advise ...I can only relate to my own experience....but in your shoes I'd be looking for T3.

Some of us have a genetic variant which impairs T4 to T3 conversion, this can be tested. If positive, particularly if homozygous ( inherited from both parents) this can add weight to achieving a T3 prescription

thyroiduk.org/deiodinase-2-...

I'm afraid there is no quick fix but given time and correct medication it can be resolved.

Bearo profile image
Bearo in reply to DippyDame

I’m confused by the blood results……why does Goinginsane have both high TSH and over range FT4?

Goinginsane1 profile image
Goinginsane1 in reply to Bearo

this is my question too. I doesn’t make sense does it

DippyDame profile image
DippyDame in reply to Goinginsane1

why does Goinginsane have both high TSH and over range FT4?

TSH is a pituitary, not a thyroid, hormone

For some reason your pituitary may be failing to respond to the high FT4

Your TSH, though higher than we would advise is, as far as NHS medics are concerned, not excessively high at 4.67. Some consider that level to be 10.

This is an example of why FT3 and FT4 should be tested and used as markers rather than TSH which is unreliable because it can fluctuate during the day.

Was the test done before 9am when TSH will be highest?

High FT4 with low FT3 indicates poor T4 to T3 conversion.

And , or, overmedication will raise FT4

So more than one thing may be affecting results

Just a few thoughts

Jaydee1507 profile image
Jaydee1507Administrator

When did you take your last Levo before this test and what time of day was it?

Are you taking a PPI or anything else that might affect absorption?

Goinginsane1 profile image
Goinginsane1 in reply to Jaydee1507

I took it the morning before around 10am.

I hadn’t eaten or drank anything that morning and the blood was drawn at approx 9am.

I was taking propranolol for a week or 2 prior to it but stopped that day as it was causing my severe chest pain and breathing difficulties. I am still struggling with my heart not working properly especially every late afternoon/evening. This is making think I have to go back up to taking 75 again and not doubt have a whole load of other issues again.

It seems like T3 is what is needed, but I don’t know how to get it?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Goinginsane1

So long as you remembered not to take Levo before the blood draw.

Are you taking your iron 4 hours apart from your Levo as that will have an effect on absorption?

I don't think you've tested B12 & folate so that would be a good step. often if nutrients are low or just not optimal then thyroid hormone wont work well.

If you want to try T3 then you also need optimal nutrients and it takes a long time to raise ferritin.

If you want to see an Endo about adding T3 then email info@thyroiduk.org for a list of Endo's. Pick one or two then post here asking for expereinces of them. Your post will be locked and people will message you privately their feedback.

Goinginsane1 profile image
Goinginsane1 in reply to Jaydee1507

yeah I definitely didn’t take it that morning.

I am waiting at least 4 hours before I take the iron tablet after levo.

I have just ordered a b complex and selenium (100). Am I right in saying I need to stop the b complex a few days before any blood test?

I feel like I am having to increase my levo in order to stop my heart from doing what it’s doing but then I will have a whole range of other issues of over medication once more.

I spoke to one of the endocrinologists on the list based in Cardiff last year and I have emailed him again asking for an appointment but he hasn’t got back to me.

Is it possible to increase conversion by increasing vitamin levels? And by treating anxiety do you think? Is T3 not the best option?

Goinginsane1 profile image
Goinginsane1 in reply to Jaydee1507

these were my results approx 1 month ago. I have been taking iron and vitamin D since though, but Levothyroxine has stayed the same at 62.5.

Maybe I should get another blood test again as I was taking propranolol before this test.

And add selenium and b complex supplements and continue to eat healthy and enough. I wasn’t eating much priory to this test either due to anxiety. I have been eating a bit more the last week or so.

It’s the heart issue that is causing me problems right now more than anything else 😞

Goinginsane1 profile image
Goinginsane1 in reply to Goinginsane1

Results

.
Barfida profile image
Barfida in reply to Goinginsane1

Can I ask what brand of Levi you are on? I get more palpitations on eltroxin I also feel over medicated and I have water retention through out my body tsh 0.72 . Was thinking of speaking to gp to reduce dose.

Goinginsane1 profile image
Goinginsane1 in reply to Barfida

accord. I can’t have TEVA brand. That caused me all sorts of issues.

I feel over medicated due to symptoms and now I feel under medicated too but I don’t know how that can happen 💁

Jaydee1507 profile image
Jaydee1507Administrator

You have a lot of work to do on your vitamins and no wonder you feel

Drink orange juice with your iron tablet to help it absorb better. Try eating chicken livers a few times a week.

Low iron/ferritin can cause chest pain and heart issues.

Your folate is low and B12 not great. A good methyl B complex will help like this one.

amazon.co.uk/Liposomal-Soft...

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

It's going to take you quite a few months to get vitamins better, more for ferritin. You need optimal vitamins to tolerate T3 so they are the first things to set to work on.

Goinginsane1 profile image
Goinginsane1 in reply to Jaydee1507

thank you

SlowDragon profile image
SlowDragonAdministrator

Propranolol would have significantly affected uptake and conversion of levothyroxine

How much propranolol were you prescribed

Anxiety is a symptom of high Ft4 and low Ft3

Improving low vitamin levels essential

Only make one change at a time

Have you had ultrasound scan of thyroid

Other things to try

Suggest you try splitting levothyroxine. Taking half dose waking and half dose at bedtime

Strictly gluten free diet might help

Request referral to psychiatrist. They can prescribe T3

Goinginsane1 profile image
Goinginsane1 in reply to SlowDragon

a psychiatrist can prescribe t3?

SlowDragon profile image
SlowDragonAdministrator in reply to Goinginsane1

Yes

Low T3 recognised as cause of depression (and anxiety)

ajp.psychiatryonline.org/do...

Alternatively can you afford to see thyroid specialist endocrinologist privately

Initial consultation £250 Approx

List of thyroid specialists and endocrinologists who will prescribe T3

Roughly where in U.K. are you

Some are doing consultations on zoom

healthunlocked.com/thyroidu...

You might find my profile helpful. Was stuck on propranolol for almost 20 years until went gluten free and got all vitamins optimal

Goinginsane1 profile image
Goinginsane1 in reply to SlowDragon

ah okay. I see. I am seeing a top private mental health dr next Wednesday and I have done another medichecks bloods test today to get the latest/up to date results to take with me too. I am in south west wales.

I have contacted an endocrinologist but I think he thinks my anxiety needs to be addressed first. I agree but I need both to be addressed. Maybe the psychiatrist will be able to help with both 🤞🏻

I am taking prescribed iron as ferritin was low a month ago and vitamin d and just added a b complex. I am eating healthy and well now too. Wasn’t eating enough for a long time.

I was only taking propranolol properly for around 2 weeks. It caused severe chest pain and burning up into my shoulder and ear which lead me to a&e. When I stopped it that went away so I’m pretty sure that was making things even worse.

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