High Free T4 with hypothyroidism?

[Ripley59]

I've had hypothyroidism for about 15 years and been on levothyroxine all that time. It's never really got me back to feeling great but this year I'm dreadful. They raised my levo to 200mcg in July and the effect has been a disaster. I lost 50% of my hair and bedridden on too many days. Gradually reducing my levo I'm about to go to 100mcg because my free T4 is at 51! I'm a wreck. How can I have high Free T4 with hypothyroidism? My TSH is 6.3.I'm very concerned, my mum legs are weak. I'm exhausted, sleep is a problem and it takes ages to get going to do anything.

[pennyannie]

Hello Ripley and welcome to the forum :

Your bio states you have been hyperthyroid and now hypothyroid - do you have a thyroid - or has it been surgically removed or you have had RAI thyroid ablation for Graves Disease ?

It sounds as though you are not absorbing nor converting the T4 Levothyroxine - has your surgery considered trialling you on liquid T4 ?

You are on a decent dose but your TSH much too high as this should read below 2 when on thyroid hormone replacement and most of us feel better still under 1 and towards the bottom of the TSH range.

Do you take the T4 on an empty stomach and wait around an hour before you eat or drink anything ?

When you have a blood test do you take your T4 before or after the blood draw ?

T4 - Levothyroxine is pretty much inert and a storage hormone that the body converts into T3 as and when needed with your brain and heart taking the lions share of the T3 - and your thyroid responsible for full body synchronisation of your physicality through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Taking any form of the active hormone T3 will likely have improved your health and well being- no question.

No thyroid hormone replacement works well until the core strength vitamins and minerals of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - have these ever been run ?

If your doctor is unable to help with these blood tests you can arrange them for yourself - details of Private blood companies are listed within the Thyroid UK website -

thyroiduk.org - who are the charity who support this forum :

You need to order a full thyroid panel to include TSH, Free T3 .Free T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D -

sometimes packaged as a Thyroid Advanced blood test and between them I think Medichecks and Blue Horizon offer a nurse home visit to draw your blood which is the least stressful way - though at an additional cost - but my treat to myself - once a year.

You need a fasting blood draw with an early morning appointment and take your T4 for that day after the blood draw - so leaving around a 24 hour window from your last dose of Levothyroxine.

If taking any supplements leave these off for around a week before the venous blood draw so we measure what your body is holding rather than that just ingested - and leave off anything containing biotin as this can negatively affect the lab assays used in the blood test analysis.

Then you simply post the results and ranges back on here in a new question and you will be advised of your next best steps back to better health.

This is how we all need to start of and forum members will work with you going forward as to what you can do for yourself as this is a patient to patient forum and we have all been ' there ' in some shape or form before you and come back on to help others as the NHS knowledge and treatment of thyroid health issues quite dire and we need to help ourselves.

[Ripley59 in reply to pennyannie]

Thank you for reply. I'm actually hypo not hyper. I have been for years. I seem to have nose dived into hyper. I take supplements, b12, folate, vitamin d3, vitamin c. I still have a thyroid, I went gluten free at the start of the year. I take my levothyroxine in the evening 2 hours away from food or coffee because I thought I had an absorption problem. I've been given an urgent referral to the hospital because my results are so unclear and odd. I'm just worried that my health is suffering so much and my T4 and free T4 are so out of whack without explanation. I'll see what the hospital says and order my own blood checks. I was called in for a very quick GP appointment this morning when they saw my latest results were worse than 4 weeks ago and my GP called the hospital today after my appointment because she's concerned, so am I!

[pennyannie in reply to Ripley59]

What makes you think you have dived into hyper - symptoms of under medication are very similar to those experienced when hyper - it can be very confusing - as some symptoms sit in both over and under active thyroid camps.

Thyroid uk website thyroiduk.org has a very thorough list of both hyper and hypo symptoms - might help to print this out and box tick in preparation for your appointment.

Do you have any readings and ranges there you can share with forum members so we can try and advise you of anything ?

Ok - please keep us in the loop - are you now waiting for an urgent appointment or have a date already ?

[Ripley59 in reply to pennyannie]

I’ll post results as soon as I get them. My go just does thyroid function and serum TSH. I’m waiting for the referral, I only had the call from my GP today following my appointment this morning at the surgery. I’ll do as you kindly suggested and print out the symptoms in preparation and see how things go. Thank you for all your suggestions it’s really helpful.

[pennyannie in reply to Ripley59]

That's ok - glad to be of some help -

Did Levothyroxine alone ever work well for you and do you know if your hypothyroidism is caused by an Auto Immune thyroid disease ?

Some people can get by on T4 only :

Others find it seems to stop working at some point in time and find by adding in a little T3 - Liothyronine - that restores their T3/T4 hormonal balance.

Some can't tolerate T4 at all and need to take T3 only :

Whilst others find their health restored better taking Natural Desiccated Thyroid - which contains all the same known hormones that the thyroid supports you with - namely trace elements of T1, T2 and calcitonin + a measure of T3 + a measure of T4 and derived from pig thyroids dried and ground down into tablets referred to as grains.

NDT was the original treatment for hypothyroidism and successfully used to treat hypothyroidism for over 100 years and then Big Pharma launched it's own synthetic treatment options of T3 and T4 and went about claiming market share monopoly.

Up until around 2000 your doctor had all these treatment options in his box of tricks if T4 - the cheapest option - didn't work for you -

Sadly, now , doctors in primary care have just anti depressants as a second line treatment option, and we need a referral to an endocrinologist to assess our health needs further -

and it has become a bit of a post code lottery with CCG/ICB financial constraints imposed rather than medical need acknowledged on certain thyroid medications in some areas of the country.

Obviously we still need the strong core strength co-factors of ferritin, folate, B12 and vitamin D maintained at optimal - whatever treatment option is prescribed.

When with any new information it's best to start a new question / post - as this forum gets very busy and we try and offer as full a reply as possible within around the first 24 hours of posting as all forum members can read everything that is being written and support you accordingly.

Make sure you always reply to a named person as they get notified they have a message waiting - otherwise - without a named recipient in your reply - you could think you are being ignored - and that is not who we are o what we are about :

If you get lost reading around - just press your Profile icon - top right on my laptop and bottom left on my phone and that takes you back to everything you have written and all your replies.

If you want to read anybody else's Profile and all they have ever written on this patient to patient forum simply press their icon alongside their name where they have written something.

Hope that makes some sense - ask away if it doesn't -

[Ripley59 in reply to pennyannie]

In the early days I improved but not for the last 15 years. I tried NDT buying it myself and adding T3 a bit at a time but my health took second place for some time because of other things going on and in the last 5 years I've just got worse. During COVID my health really got worse and I feared it was CFH. It's only now I'm really ill that I've pulled my finger out and refuse to continue this way!

[pennyannie in reply to Ripley59]

Yes, I get it - very often other people's issues get in the way and we tend to support others before sorting ourselves out :

So - lets make this your New Years Resolution and this year - your year - to work on getting better thyroid health care and improving your overall well being and future.

[Ripley59 in reply to pennyannie]

Most definitely, 2024 is time to resolve my health. The thought of living this half life, never able to make plans because I have no idea how I'll be is just a pain. Your support and upbeat post is most welcome. Wishing you everything you hope for in 2024.

[pennyannie in reply to Ripley59]

Ditto :

[jimh111]

Have you always had these unusal results? Do you know what your blood test results were when you were diagnosed? It would help to post the latest results again with the units and reference intervals (numbers in brackets).

[Forestgarden]

A free T4 of 51 is very high, assuming an upper normal range of 22. But what is your free t3? Has it been measured? If your free t3 is low, it means you're not converting well. High free t4 gives me some hyper symptoms (I get tremor, anxiety, racing mind, thumping heart) even when my free t3 is low. And lowering my levo slightly is enough to stop these symptoms, so its not the low t3 causing them.

[Ripley59 in reply to Forestgarden]

My GP won’t do T3. I’m ordering private testing. In the meantime I’m ordering private testing and waiting for the “urgent referral “ my GP made this morning whenever that may be! Thank you

[humanbean]

This thread might be helpful :

healthunlocked.com/thyroidu...

[McPammy]

you definitely need to lower your levo T4 and check your t3 level. That is a hugely high result for T4. With that much t4 I don’t know how you are functioning. You need to get all your levels in range. tSH around 1.00 and T4 mid range with T3 also mid range. Your body is flooded with T4. But the confirm that you need latest bloods and reference ranges.

I’m very sorry you are in a bad way. You need some medical attention.

[Ripley59 in reply to McPammy]

Some days I simply don't function. I've never felt so crap and it's been going on for months. I've reduced down slowly from 200mcg levo and I'm furious it caused so much damage to my health. I've just started 100mcg levo but that won't take effect for a while. I'm really up on my vitamins but I need to get private blood test soon. No idea when my urgent endo appointment will happen, there's a junior doctor strike for 6 days next week so that will knock loads of appointments back. I might have to turn to a private one if I don't improve. It's miserable that our hormones can create such a dramatic effect and the GPs seem clueless!

[McPammy in reply to Ripley59]

If you’d like details of my private only endocrinologist just private message me. He is in Oxford but you don’t need to travel as he does telephone and zoom as well as face to face. You’ll need a GP referral letter and latest bloods if you want a consultation privately.

[Hectorsmum2]

I have seen this before with TSH led treatment, when doctors increase because the TSH is on the high side and ignore the high T4. Reduce your levo and as other have suggested get your T3 tested. How is your ferritin?