which way now: I am not well and took myself for... - Thyroid UK

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weg1 profile image
weg1
11 Replies

I am not well and took myself for endo bloods, results as follows

February December October

Free T3 normal 4.9mol (3.7-6.6) 3.8mol (3.7-6.8) 1.8mol (3.7-6.8)

TSH 5.23mu/l (0.27-4.2) 18.13mu 57.15mu

Free T4 not measurable 3.5mol (11-20)

no further action required until, March,sorry that was cancelled now in April appointment as far as endo is concerned.

continue on lio T3 only 20ug morning 10ug afternoon and evening

came off levo October due to lupus symptoms and forced her hand to treat T3 only, not a good idea, but new I had bloods due at the time with endo.

I weight less than eight stone think a stone in the last month alone and have no appetite, I am physically and mentally drained and now not sleeping, work is very difficult as is personal life. thyroid is beating out of my neck and I've got classic for me ear ache, new to me tinnitus, shoulder/neck pain and thick head, boarder line head cold on and off.

A lot of this is down to too much going on, which I'm working on. lupus but with no joint pain, slight rash, and must eat more!

Tried to make this as short as possible, but really struggling and can't wait for this to get worse.

Think these bloods say have a little more meds too.

Endo wanted bloods done on full meds, I compromised this, all blood tests were done 4pm after taking the morning dose of T3 at 8am and deferring next dose. On the understanding I'd know they'd be a little high.

can someone confirm 20/20/10ug sounds like a good idea.

Thank you

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weg1
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11 Replies

weg,

Do you have Hashimotos?

I think because you have Lupus you should be thinking more nutrition.

Have you had Vit B12, Vit D, folate and ferritin levels tested ? These are commonly deficient in people with low thyroid hormone and are vital in good thyroid hormone synthesis.

It looks to me like to might require a dose increase but others who medicate T3 only will comment on your bloods.

Have you had adrenal function tested? All thyroid hormone need adequate cortisol levels for good conversion, a strong immune system, good gut health and blood sugar balancing.

Flower

This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.

thyroiduk.org.uk/tuk/treatm...

Good Thyroid Function Requires Iron, Cortisol and selenium.

tiredthyroid.com/cofactors....

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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weg1 profile image
weg1 in reply to

Hello

auto immune hypothyroidism this endo describes it as, but just checked and she hasn't tested antibodies. Will ask in April.

Am supplementing but only recently realised since telling them I'm supplementing no one has tested me again.

I had a short synacthen test a while back, results a verbal normal, but didn't see the results.

I am on the right path just find it hard to follow when not well enough.

x

in reply to weg1

Ask endo to test TPOAb & TGAb thyroid antibodies.

shaws profile image
shawsAdministrator

Different Endos might have different ideas and your bloods are also different to what mine would be.

I take my full dose of T3 as soon as I waken (around 45mcg) and wait around an hour but I am well. I follow a different protocol to your Endo's. That doctor's patients took NDT, or T3 only. He was also a scientist who took 150mcg of T3 himself for Thyroid Hormone Resistance, which enabled him to function and carry on his profession.

We recommend having blood tests at the earliest and fast (you can drink water)? We also leave 24 hours between our last dose of thyroid hormones and blood test?

Your TSH is too high and I think you cannot be feeling too well, your FT3 could be nearer the top of the range.

T4 will also be lower - first because we aren't taking any and liothyronine only reduces T4.

I take T3 only - I am fortunate I am well now.

I will give you two links to Dr Lowe's topic on T3 only. Modern Endos who do prescribe T3 don't really understand it's interaction in our bodies and they may make assumptions. Exerpt:

And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

If we split doses we might not be able to titrate to a dose which suits. Also we have to have an empty stomach when we take thyroid hormones as food can interfere with the uptake and we also have to wait about an 1 hour after taking T3. Being hypo means also that our food might pass through our stomach more slowly. Excerpt:

And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.

I started on 25mcg of T3 and after two weeks increased by 1/2 and then 1/4 and have gone up to 50mcg but dropped down slightly.

Also our vitamins/minerals have to be towards the upper range. Have you had your B12, Vit D, iron, ferritin and folate tested.

(p.s. I took levothyroixne first - then 10mcg of T3 added to it. I have tried NDT and one in particular suits me too. )

weg1 profile image
weg1 in reply to shaws

Shaws

Thank you for the info, been following this sight for a while/years and followed up all leads, interesting that you can split T3 into 4 and that this tiny dose increase is enough.

Have come to realise my thyroid doesn't like doing any work, for it to even acknowledge TSH means the need for T4, it jumps out my neck and ears in protest. Not sure my thyroid wants supporting it just wants to be out the loop! Hooray for T3.

Only come to these conclusions with help from others here, thanks

weg1 profile image
weg1

It has been difficult to juggle meds and eat. My weight is my biggest worry.

Have been nervous of one dose method as I tend to get tremors and palpitations if I take too much thyroid meds, pulling pints and shaking doesn't go well! I look like I've been on the source, not tried it with T3 only yet.

Also my days can be long and I notice if I'm late with second dose I flag, bed time dose I heard can help with the adrenals. Worry I'll use it all up too soon. will re read the info.

Thought this endo was good for nothing but blood tests, my Dr doesn't seem to be allowed to order the tests I need. Went with IBS and she tested me for STD's! Now I mostly look after myself but I did get the T3!

Will be looking into getting Vits re checked by nurse!

x

in reply to weg1

Weg,

Any time that you are not meeting your body’s needs for energy with adequate fuel, you will be stressing your adrenals forcing them to secrete additional amounts of cortisol and adrenaline. The hypothalamic-pituitary-adrenal axis will be compromised without adequate nourishment as high/low cortisol interferes with the HPA axis which in turn suppresses thyroid function and also weakens the immune system.

Therefore it is important to eat regular healthy meals three times a day with protein, carbs & fats.

Your thyroid test results indicate you are undermedicated and would (probably ) feel better with a dose increase. I don't medicate only T3 so can't comment on actual amounts but would say I dose three times a day at present and can't feel any difference to two times or even once.

I think it is more about eating well & getting sugar levels balanced so you don't get hungry (or dizzy) in between meals, and encouraging thyroid meds to work.

Having one autoimmune disease can predispose you to others.

Flower

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

……………………………………………………………………………………………………………………..............

weg1 profile image
weg1 in reply to

It seems my appetite is the first to go when under medicated.

and I've run out of reserves. Will increase T3 and hope the hunger returns.

Have been left hypo/hashi for years, breast cancer at 28 is not right and they let it come back 12yrs later with lupus in tow!

Seems from private testing high DHEA is to blame, who do I talk to about that?!

in reply to weg1

weg,

I am sorry to hear of your on going health problems.

To talk to an endo who knows what he is doing you can email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos/doctors that members have had positive experiences with.

Good luck,

Flower

shaws profile image
shawsAdministrator in reply to weg1

I'm sorry you have had much more to deal with than many of us and Flower is right that we can develop more than one autoimmune condition.

I do hope you can finally get really well.

shaws profile image
shawsAdministrator in reply to weg1

I was fortunate not to have any bad effects with T3 at all. In fact it calmed my whole system after levo which gave me awful palps, insomnia etc.just felt ill all day/night.

Our receptor cells have to be saturated with sufficient T3 to take us through the working day and the effect of one daily dose lasts for between one to three days. Of course, we have to do it slowly and not rush. So I found taking 1 dose to start off, then after 2 weeks increasing by 1/4 or 1/2 and so on until I felt much better and for me that wasn't very long at all.

I took my pulse/temp before starting and made a record several times a day until on an optimum. If pulse/temp rises too much or palps, drop back to the previous dose and stay on that. Hopefully you will then be on a dose which suits. If we split doses we cannot titrate properly - We have to concentrate on the dose alone and listen to our body and not blood tests.

It's not magic and some people have to try various methods. Sometimes the addition of T3 to T4 works well too.

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions

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