Advice on thyroid results

[Cbreeze1961]

Hello I would be grateful if anyone could pass any comments on my thyroid results. I am feeling really ill can hardly get out of bed and my mood really low, this has been going on for a long time now and struggling to know how to proceed. Had total thyroid and parathyroid removal in august 2022 found to have thyroid cancer, had radio active iodine treatment in feb 2023 given all clear in April 2023 just being monitored now. Thyroid levels being controlled by oncologist. Been on 175mg of Levothyroxin for about 3 months now wondering if I would get benefit from some addition of T3 supplement any advice would be gratefully received I’m getting desperate for help thank you

[SovietSong]

Hi, have you got your results and ranges for TSH, T3 and T4?

[Cbreeze1961 in reply to SovietSong]

Hi TSH 0.34 (0.35-5.5)

T3 4.8 (3.5. - 6.5)

T4 18 (9. - 23.)

Thank you

[SovietSong in reply to Cbreeze1961]

If I have calculated correctly your T4 is 64% through range and T3 43%.Others on here will be more clued up than myself but perhaps a slight reduction in T4 with a little T3 added might suit better.I myself am about to trial a little T3 as no matter what Levo dose I try my T3 levels more or less stay the same.

[Cbreeze1961 in reply to SovietSong]

Thanks for your reply c

[Buddy195 Administrator]

As your FT4 is well within range, I would try an increase in Levothyroxine as a first step, to see if these alleviates your current symptoms. Always retest levels 6-8 weeks after any dose change. I only increase/ decrease Levo by 12.5mcg doses, as I’m very sensitive to changes in medication.

Have you tested key thyroid vitamins recently? (Ferritin, folate, Vit D, B12)

[pennyannie]

Hello Cbreeze:

We generally feel at our best when the Free T4 is in the top quadrant of its range with the Free T3 tracking behind at around 60/70% through it's range.

Currently your T4 is at around 64% and your T3 around 43% through the ranges.

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH -

You haven't a thyroid and the TSH a very unreliable measure anything once taking any form of thyroid hormone replacement.

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.

Some people can get by on T4 only :

Some people find that T4 doesn't work as well as it once did for them and that by adding in a little T3 they feel better with their T3/T4 hormonal balance restored.

Others can't tolerate T4 and need to take T3 only - Liothyronine.

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

NDT was the original treatment used successfully to treat hypothyroidism for over 100 years before Big Pharma launched their synthetic T3 and T4 treatment options on the back of NDT and then went about gaining market share.

The thyroid is a major gland responsible full full body synchronisation from your physicality through to your mental, emotional, psychological and spiritual well being - your inner central heating system and your metabolism.

No thyroid hormone replacement works well until your core strength vitamins and minerals - those of ferritin, folate,B12 and vitamin D are up and maintained at optimal levels -

Do you have any readings for these essential co-factors ?

Do you take your T4 on an empty stomach and wait around an hour before eating or drinking anything ?

P.S. You my well need the addition of a little T3 to replace that lost when you lost your thyroid but both your T3 and T4 need to be higher and your core strength vitamins and minerals need to be at optimal levels anyway to help support you increasing your medication whether it be T3 - T4 - or NDT.

[Cbreeze1961 in reply to pennyannie]

Hi pennyannie

I really appreciate your detailed and informative reply, i have been asking for more help regarding thyroid levels for a long time but none forthcoming from NHS it’s just being put down to mental health problems following the death of my husband 4.5 years ago.

It was actually me who referred myself regarding removal of thyroid and parathyroid and that was only because I had done so much research on the subject, I didn’t know there was a parathyroid until I read so much about thyroid. It was a chance discussion with a consultant surgeon who I had been referred to regarding lumps in my breast which can be a symptom of problems with the parathyroid. I asked him if the lumps could be connected to an overactive thyroid problems. He checked my medical records and saw I had high calcium and a parathyroid reading that was over double what it should have been the surgeon couldn’t understand why my doctor or consultant Endrocrinologist hadn’t spotted it at least 18 months prior to that time. When the operation took place the consultant surgeon had to remove total thyroid and total parathyroid because they were suffocating me the operation took 3 times the length it normally would. After biopsy the thyroid had cancer and stray cancer cells were found. It cost me just over £7,000 to have this operation and I think if it hadn’t been done I wouldn’t be here today I would have suffocated as my breathing was so bad. I had been saying for about 2 years that I felt all the problems that related to my exhaustion and low mood related to my thyroid after the operation I was really well for 9 weeks but then the exhaustion and symptoms have returned. Again I have been saying that I feel that a lot of my exhaustion and depression relates to my thyroid but I am not under an Endrocrinologist now as the oncologist is in charge of the levels of thyroxine, he just keeps saying you had emotional problems before the cancer was found. I say yes because the calcium, parathyroid and thyroid were all overactive. But I get nowhere.

I have to do something now I feel I don’t have a life anxiety and fear in my life and the exhaustion that comes along with it are wearing me down.

Plan in 2024 is to get relevant blood tests done and pay to see a private endocrinologist to try and sort my health problems out.

I am unsure how the testing works I would be so grateful if you could let me know exactly what tests I need to ask for. If I send for tests do I do it online and send the tests back in the post so they receive them on a Monday or Tuesday. I presume you have to do the tests as usual around 9 am in the morning on an empty’ stomach with water and nothing to eat or drink for an hour afterwards. Do the results get r mailed back to you and how long do they take?

I am sorry this has been such a long thread but I feel I am having to fight once again from my own corner. But I’ve got to believe things will get better.

I appreciate any help you and anyone else can give Cbreeze1961 xx

[pennyannie in reply to Cbreeze1961]

I found the hardest bit writing things out on the forum - so in my book you are already focused and on your way to better health and the Private Blood test the easy bit !

I arrange a full thyroid blood test to include a TSH, Free T3 , Free T4 , inflammation, antibodies, and ferritin, folte, B12 and vitamin D - commonly packaged as the thyroid 'ultra 'or ' extra ' package/bundle.

Between them I think Medichecks and Blue Horizon - both listed within the Thyroid UK website - thyroiduk.org - cover the whole country offering a Nurse Home Visit option at an extra charge -

and this is the least stressful way to get the venous blood test taken -

You buy online and the little box pops through your letter box and you get a phone call from the nurse to arrange a visit to draw your blood.

Make the appointment for a Monday or Tuesday by around 9.00am and you should receive back the results by the weekend and just post then back with the ranges on this forum in a new question and you will be talked through what it all means and your next best steps back o better health.

The NHS work to ranges - and just being in a range somewhere is not ' job done ' as some ranges are too wide to be sensible especially when considering the patients medical history - which I don't think happens anyway -

We work to optimal levels for optimal support and well being - and a strong core strength makes a massive difference to how one is able to use and metabolise thyroid hormone replacement.

OK - looking around it seems you know the routine is afasting blood test - and you take your T4 for that day after the blood draw so leaving around a 24 hour window from your last dose -

and stop any supplements a week beforehand so we measure what your body is holding rather than that just ingested.

If you take anything containing biotin this needs stopping as well as it can interfere with the assays used in some labs in the analysis of the bloods

This is where we all start off - once with the full thyroid panel we can support you through the next stepping stones back to better health - whether that includes seeing someone privately or not remains to be seen.

Hope that clears up the question - but ask away if I've missed anything :

[Cbreeze1961 in reply to pennyannie]

Thank you pennyannie for your help c x

[pennyannie in reply to Cbreeze1961]

Just seen SDragon has replied and that Medichecks has 20% off until the 31st -

so there you go - just order before that date - save 20% -

and you'll receive the little box and follow up nurse phone call in due course -

and relax :

[SlowDragon Administrator]

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you did your test

Next step

A) increase Levothyroxine dose a little. Perhaps 200mcg 3 days per week

Which brand of levothyroxine are you taking and is it always same brand

B) ESSENTIAL to test vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

When were vitamins last tested

[Cbreeze1961 in reply to SlowDragon]

Hi Slowdragon thank you for reply

Yes bloods done 9.10 on empty stomach 24 hrs after last levothyroxine doze and taken with water.

Not sure if all same brand as put in weekly dispenser,

I have had vitamin D, B12 and I think it was folate and told all ok, they don’t do ferritin or it could be folate at my doctors surgery.

I’m not taking any vitamin supplements

[SlowDragon Administrator in reply to Cbreeze1961]

I have had vitamin D, B12 and I think it was folate and told all ok,

You need to get printed copies of actual results and ranges

[Cbreeze1961 in reply to SlowDragon]

Thanks fir reply slowdragon

I plan on getting private blood tests done early Jan and then paying to see a private Endrocrinologist

As well as TSH, t3, t4, vitamin D , B12, folate, ferritin

Should I also get cortisol checked

Are there any others you would advise doing and are they usually done under a normal blood testing package for thyroid

Thank you any advice most gratefully received cbreeze1961

[Cbreeze1961 in reply to Cbreeze1961]

Hi SlowDragon also do I need my calcium checking x

[SlowDragon Administrator in reply to Cbreeze1961]

The two most popular test options are Medichecks or Blue Horizon

Blue Horizon is usually more expensive. It does include a cortisol test

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

Currently has 20% off if order before 31st Dec with this code

EARLY20

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early on a Monday or Tuesday morning and post back immediately

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

No point testing calcium at this stage

[Cbreeze1961 in reply to SlowDragon]

Thank you SlowDragon for all your help x