TSH &T4 levels after total thyroidectomy

[Saintsman]

I’m 6 years post TT and generally all TSH and T4 tests have been broadly in range and I’ve been feeling quite good. This time(6 months ) things seem different and I wonder if others have the same experience? TSH has reduced below normal levels and T4 are normal but my symptoms are as if TSH is too high. I’m expecting a reduction in thyroxine prescription but worried symptoms will worsen. I’d prefer a small increase but that is likely to worsen TSH.

[SlowDragon Administrator]

welcome to the forum

Do you always get the same brand of levothyroxine at each prescription

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Always test

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when thyroid levels not optimal

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

TSH has reduced below normal levels and T4 are normal but my symptoms are as if TSH is too high.

Please add actual results

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Only do private testing early Monday or Tuesday morning.

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

Just TSH, Ft4 and Ft3 test - £32

monitormyhealth.org.uk/thyr...

10% off code here

thyroiduk.org/testing/priva...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

[Saintsman]

Thank you, that’s fantastic info ehich I’ll work through. In the immediate meantime I’ve entered answers below :

Do you always get the same brand of levothyroxine at each prescription

Normally but not always I’ll talk to the pharmacy

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Interesting mine are tested 6 monthly change or no change I’ll pick that up with the consultant I see next Wednesday

Always test

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

All but FT3 I’ll pick that up next Wednesday thank you

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Not done Same as before- next Wednesday

Low vitamin levels are extremely common when thyroid levels not optimal

thank you that might explain it

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

I don’t select timing of bloods but I will in future make it 24 hours and water only

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

Brilliant!

is this how you did your test

No

TSH has reduced below normal levels and T4 are normal but my symptoms are as if TSH is too high.

Please add actual results

125 mcg daily except weekends when it’s 100 each day

6 months ago when I felt better it was 125 daily

TSH 0.26 but 6 months ago before weekend reduction was 0.2

FT 4 14.6 but 6 months ago before weekend reduction was 16.1

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Thank you so much this has been hugely relevant and helpful prior to next Wednesday’s appointment

[pennyannie]

Hello Saintsman and welcome to the forum:

We generally feel at our best when on T4 monotherapy when the T4 is up in the top quadrant of its range with the T3 tracking just behind at around 60/70% through its range.

T4 - is a prohormone and needs to be converted by your body, in the liver, into T3 the active hormone that runs all your bodily functions and it is too low a T3 for you that gives you the insidious symptoms of hypothyroidism.

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 and just being in a NHS range is not optimal with some NHS ranges being too wide to be sensible.

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

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. with T3 said to be around 4 times more powerful than T4.

Some people can get by on T4 only medication - Levothyroxine :

Others find that at some point in time T4 seems to not work as well as it once did and need to add in a little T3 - likely to replace that little bit ' lost ' when they lost their thyroid and find once their T3/T4 hormone balance restored they feel much better.

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

Whilst others feel better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived by pig thyroids dried and ground down into tablets referred to as grains. NDT is the original treatment for hypothyroidism and used successfully for over 100 years before Big Pharma launched it's T3 and T4 treatment options on the back of NDT and then went about gaining market dominance.

Can I ask the reason for your thyroidectomy please ?

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH - though fully understand that in primary care this is all most doctors tend to do:

You haven't a thyroid - and the HPT axis - the Hypothalamus -Pituitary - Thyroid feedback loop - on which the TSH relies on as working well - now does not work well - as it is missing an end - the thyroid -

so this feedback loop is now broken and this circuit open ended as there is no longer a thyroid in situ to complete this feedback loop and the TSH a totally misleading reading of someones thyroid hormone replacement status.

[Saintsman in reply to pennyannie]

Thank you Pennyannie. That s very helpful. My TT was due to medullary thyroid cancer and until the last few months T4 mono therapy via Levothyroxine has been remarkably good. The small reduction prescribed from 125mcg daily to 125 for 5 days and 100 for two seems to have had a big effect on my feeling generally , cold hands, some weight gain and bowel movements 2x weekly from 3-4 weekly. So all the usual signs of hypo. I was told in my early days that T3 was not an NHS prescribed medication. Is that correct please and have you any idea of the price of T3 privately if, once tested, I do need it?

[pennyannie in reply to Saintsman]

Hey there -

T3 is available on the NHS as is NDT - but I'm afraid it is a post code lottery with some areas of the country prescribing - whilst other CCG / Intergrated Care Boards not :

If you go into openprescribing.net and then analyse - you can see by surgery and CCG / ICB area what's going on in your neck of the woods :

and whether financial constraints rather than medical need is being implemented -

For the drug - enter Liothyronine for T3 and Armour for NDT in the analyse section of Open Prescribing search engine

I now self medicate with NDT having been refused both T3 and NDT by my doctor and hospital in late 2017 and am much improved.

You may well be well with a dose increase in T4 back to where you were and optimal vitamins and minerals as previously detailed - but we need to see a full thyroid panel to include these co-factors to help you further understand what's going on.

Thyroid UK - the charity who supports this forum holds a list of recommended endos and thyroid specialists - both NHS and private - so this might be useful to have - just email admin @ thyroiduk.org - and you can always ask for recommendations should you find someone you wish to consult - many still offer video consults so distance does not have to be an issue -

We are not allowed to openly discuss and medical professional - replies will be through Private Message - and then the Chat Icon - looks like a paper plane - lights up if anyone replies to you privately.

[Saintsman in reply to pennyannie]

That’s brilliant thanks again. I’ve found that in the South East region the prescribing of T3 seems high which if needed is very helpful. My oncologist specialist is private now and I will ask about getting bloods for T3 and vitamins mentioned when I talk on Wednesday. Outstandingly helpful. I’ll let you know what is said on Wednesday!

[pennyannie in reply to Saintsman]

Okey doke -

I read that post surgery for cancer the TSH is initially kept suppressed by prescribing T3 - did you also have Radioactive Iodine ?

Yes, some counties are not prescribing T3 at all -

others only prescribe up to 10 mcg -

some are actively trying to switch patients who are improved on a T3/T4 combo - back to T4 monotherapy -

whilst others embrace T3 and treat to relieve symptoms :

NDT appears much harder to get prescribed on the NHS - probably because it is the most expensive options :

Obviously if you can afford to go privately the options are there :

But I have to say through the support of this amazing forum and a couple of books I've managed to turn things around for myself.

[Saintsman in reply to pennyannie]

Thanks again. Supression of TSH is only appropriate for some forms of cancer but defo not for medullary thyroid cancer so I’ve always been in the low to normal TSH range until recently reduced.

[Hennerton]

I had a thyroidectomy on 2006 and managed well on T4 only for six years. After that I struggled with innumerable health issues but did not know of this site and had never heard of T3. By chance I got talking to someone who had just started taking T3 under her private endocrinologist and she also had no thyroid. I asked my GP for a full blood test and unsurprisingly my T3 was under range. He said he could not prescribe T3 so I went privately, got my prescription and then persuaded my GP to pay in the future. I have been on it ever since and it has changed my life. Do get blood tests and then if under range, ask your GP if they will pay.

[Saintsman in reply to Hennerton]

Thank you. I will do that. Can you recall approx price of T 3 privately. I mean was it huge or not too bad.

[Alex_p]

I have a similar experience, I had a total thyrodectomy 5.5 years ago. Mine was because of cancer and they told me I need to keep the TSH supressed for the first 5 years, so I’ve had it like this so far. I don’t think it has anything to do with how I feel, since that tends to change. For the first couple of years I was fine but then I started to have symptoms, to which doctors said that since TSH looked like it always has, I should be fine. It’s thanks to this wonderful group that I learned about the importance of FT3 and FT4 and noticed that I was not converting well T4 to T3. They also told me to look at my vitamin levels and I had vitamin B12, folate and iron all low, so I started supplementing. My point is that TSH is less important when you don’t feel well (except if it’s high), so best to look at other values listed above.

[Saintsman in reply to Alex_p]

Mine too was cancer but I am not required to be TSH suppressed because it’s medullary. However that apart I’m much the same. I do see the specialist oncologist privately so will ask on Wednesday. I’m really much more hopeful now so thank you again. The problem has been lack of information because though many people have thyroid cancer it takes groups like this to gain useful information as opposed to internet gossip.

[Batty1 in reply to Saintsman]

Do you get a yearly scan and Thyroglobulin and antibody testing to make sure you don’t have recurrent thyroid cancer?

[Saintsman in reply to Batty1]

Yes. I do, calcitonin and scanning. I think it’s a medication issue.

[Hennerton in reply to Alex_p]

it has changed hugely since I first started and I am sorry but as it is on prescription, I have no idea. Others here will know but you need to ask them to send you a private message if you are thinking of obtaining it yourself, or ask your pharmacy the current price in the UK.

[Alex_p in reply to Hennerton]

I got a private prescription for liothyronine this week, generic brand. I asked the pharmacy how much 84 tablets would cost and they said around £190, so it’s definitely expensive.

[Saintsman in reply to Alex_p]

Wow! Thank you.

[annnsandell]

I was in a similar position a few months ago and spoke to my GP. It was agreed to retest and it was back to usual levels, just a blip.

[connyankee]

Add this book to your library: Paul Robinson's, The Thyroid Patient's Manual, and Janie Bowthorpe's, Stop The Thyroid Madness. Both have FB pages and websites.