Newbie needing help! : Please can someone give me... - Thyroid UK

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Newbie needing help!

Earth-Angel profile image
11 Replies

Please can someone give me some advice and information on my test results? Thank you.

...

I am hypothyroid and was diagnosed in 2008. I currently take 125mcg Levothyroxine per day, this has never made a difference apart from stopping the thumping heart and palpitations. I am continuously tired, always too hot, have pain in my joints, headaches, neck pain, increased weight, recurrent viral infections/coughs, rhinitis, hair falling out, plantar fasciitis, eye sight is deteriorating, IBS, need I go on... LOL Never seem to get anywhere with the drs or endocrinologist. Really is affecting me now. Have no energy and feel really low in myself. Would just like some help and advice. Thank you

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Earth-Angel profile image
Earth-Angel
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11 Replies
ShinyB profile image
ShinyB

Hi Earth-Angel and welcome :) Have you been diagnosed, and for how long; are you on levothyroxine and how much; and what are your symptoms. It will help other people if you include more detail :)

Earth-Angel profile image
Earth-Angel in reply to ShinyB

Thank you ShinyB, have added more info above

Kell-E profile image
Kell-E

T4 looks to be near the top of the range, but fT3 looks a bit low and rT3 is high. How is your health in general?

SlowDragon profile image
SlowDragonAdministrator

Your vitamin D is severely deficient

GP should prescribe loading doses

Look up your local CCG guidelines on vitamin D deficiency and how to treat

Eg Oxfordshire guidelines

oxfordshireccg.nhs.uk/profe...

Your active B12 is very low and further tests needed

This link says any active B12 under 70 is suspicious

viapath.co.uk/our-tests/act...

Do you have any Low B12 symptoms?

b12deficiency.info/signs-an...

Folate is on low end and works with B12

Suggest you ask GP to test for Pernicious Anaemia and perhaps testing homocysteine and MMA too

Ferritin is also low

Detailed supplements advice on Low vitamins due to under medication and how to improve

healthunlocked.com/thyroidu...

How much Levothyroxine are you currently taking

Your FT3 is on low side and you may need addition of small dose of T3

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

But you really need to improve dire vitamins first

Kell-E profile image
Kell-E

Yeah, it looks like you have plenty of ft4 and not enough ft3. You seem to have hypo symptoms. You do have some issues that may be affecting conversion, like lowish iron.

You are converting to a lot of rT3. Your doctor should be acting on your low iron, vitamin D, and B12. Also, many people do better on less levo and T3 added in. You doctor likely will not hear of this, so you may need to do it on your own if you are to feel better.

ShinyB profile image
ShinyB

From what I understand, hypothyroidism goes hand in hand with poor absorption. So hypothyroidism means we don’t absorb nutrients very well, and those very nutrients are essential to good thyroid function. Vicious circle! Ferritin, for instance, apparently needs to be at least 70, for your body to be able to manufacture thyroid hormones well.

Hopefully, with your Vit D level being deficient, your GP will not only give you loading doses of Vit D on the NHS, but will also consider prescribing treatment for the other nutrients that are very low, even though they are just in range. I would emphasise to the doctor all your symptoms and the severity of them, and ask for treatment to get your levels optimised. If the doc will only treat the Vit D, then come back and re-post, and get some pointers on self-treating.

Most doctors seem to only go by your TSH and, at a push, your fT4 level. But it’s clear from your full results that your conversion of T4 to T3 is poor. ft4/ft3 should be no more than 4 really, and yours is over 4.9.

So, it’s important to try to get your vitamin levels up, but important to also start trying to get your fT3 level up and your rT3 level down.

Levothyroxine is a T4 replacement. T4 is a storage hormone, which then needs to be converted to the active hormone T3. Some people can’t convert T4 to T3 very well, which is why there are so many people being told their hypothyroidism is responding to treatment, according to lab results, but who are still feeling horrendous like you are. Taking some T3 is a solution.

I think you need to start reducing your levothyroxine, as it would appear your body is converting a lot of the T4 to reverse T3. Taking T3 also helps to reduce rT3. I found this article reasonably easy to follow, re rT3 - restartmed.com/reverse-t3/

You’re unlikely – very! – to get a GP or Endo in the UK to prescribe T3 now (long story) so a lot of people source it privately and self medicate.

Your inflammation is likely to be a factor too, as it can reduce T4 to T4 conversion (according to article in the link I just gave you). I need to get some sleep now as my off button has just detonated lol, but there are ways to reduce inflammation. Hopefully someone will comment, or I’ll come back to it tomorrow.

StelAnd profile image
StelAnd

I got a print out yesterday & it doesn’t show anything for reverse t3, free t3

helvella profile image
helvellaAdministratorThyroid UK in reply to StelAnd

rT3 is never done in the UK (except, possibly, in some research). T3, whether FT3 or TT3, is not usually done - even if a doctor requests it. Quite often, only endocrinology consultants are allowed to request it and even then, it is not always actually tested.

Clare0116 profile image
Clare0116 in reply to helvella

I agree with the above. After 20yrs since myxodoema total thyroid loss diagnosis and reduced dose of thyroxine only, my request to see an endo and have t3 tested was allowed. They agreed with my Dr to continue with 125mcg of thyroxine (used to be 150) and do nothing else about my chronic hypothyroid, weight gain, fatigue and depression. Its an NHS conspiracy to keep costs down and keep the patient in ignorance! Many Drs have only a general interest in thyroid failure and god-like consultants arrogantly insisting on only basic tests and dosing to mid-range of blood levels. Most of us are not being properly diagnosed and treated. Rant over, I feel better now.

ShinyB profile image
ShinyB in reply to StelAnd

Sadly I think it's very difficult to get a full thyroid profile on the NHS. The most my GP will do is TSH. The endo eventually agreed to test FT3 but not rT3. I had my full check done through a private test from medichecks.com.

StelAnd profile image
StelAnd

Your rant Clare0116 is justifiable and it’s a disgrace that us patients have to be fobbed off with minimal thought about how important the thyroid use is to human bodies along with feeling debilitating to boot.

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