latest results

[1lolabear]

Hello to you all .

Would appreciate if you could look at my latest results . I am in NDT and left the 24hr window before testing .

My GP would like me to send my result to him , he’s not happy I’m on NDT. (I just wish I hadn’t told him)

He want to test my THS levels this week, should I refuse the test or would this complicate any future care?

thank you in advance.

[Brightness14]

It's a pity that you told your Doctor I never tell mine anything. You should feel well on your results, do you?

[SlowDragon Administrator]

personally I think we should tell dr otherwise thyroid treatment will never improve

I would give him copy of test results and explain you feel well and stable on NDT (assuming you do)

Explain MMH is NHS test lab and that it’s waste of your time and NHS money to repeat TSH test via GP

[1lolabear in reply to SlowDragon]

I think

I will opt out of the NHS testing . I can’t deal with the stress and negativity it seems to bring .

I’ll just manage myself , with the advice of this brilliant group . Thank you

[Jazzw]

Morning 1lolabear

You have my sympathy—my GP also isn’t happy about me taking NDT, however, we now have a note on my record that says “patient has capacity to make her own decisions about care”. That was after I put him straight on quite a few misconceptions he held:

It’s unregulated and you don’t know what’s in it—no, it’s not, Armour is made by a proper pharmaceutical company and they have to conform to normal standards.

Your TSH says you’re on too much—no, FT4 and FT3 show that’s not the case, my TSH has been suppressed for years because of the T3 and reducing my dose has little to no effect on that

You’ll develop goggly eyes if you take too much—no, pretty sure I won’t (I don’t have autoimmune thyroiditis. And secondly, after a decade of being on NDT, I think that would have happened already if it was going to!).

I think he still believes he’s right but he ran out of arguments, not least because when I asked for evidence of what he said he couldn’t actually provide any.

Anyway…

If you left it 24 hours before testing your FT3 is actually higher than it appears. We tend to recommend splitting the NDT dosage into 2 before testing—half in the morning, half 12 hours before the test—to get a better picture of FT3 levels.

How do you feel? That’s the important thing right now. Do you feel over-replaced? Just a note of caution that you might feel fine for now (I did for quite a while with similar levels) but you may find eventually that you develop symptoms of over medication (in my case palpitations). It might be worth experimenting with reducing just a smidge—say a quarter grain—to see how that feels.

How much NDT do you take?

[1lolabear in reply to Jazzw]

H , I am on 2 and quarter a day . I feel really good in myself . I’ve even come off antidepressants as a consequence of being on NDT and feeling better - I do not take any thyroxine .

I tried dropping the half a dose but I felt the symptoms coming back . Would you suggest me dropping to two and a half one day , then two the next ? Many thanks x

[pennyannie in reply to 1lolabear]

Hey there :

Pleased to see you have dropped your dose from 7 months ago when I last replied and glad you are still feeling good and managed to drop the anti depressants.

You need a consistent dose with NDT - so no you can't chop and change dose on a daily basis.

Is this dose split ?

If this was 24 hours from last - I'd suggest you maybe slightly over medicated -

and dose adjustments are by 1/4 grains - not halves.

[1lolabear in reply to pennyannie]

Yes I will drop the quarter dose and see how I go . Thanks for taking time in replying

[pennyannie in reply to 1lolabear]

If these are blood tests were at 12 hours from last dose I wouldn't be saying reduce -

but if this is after 24 hours your T3 would have been running much higher at the 12 hour interval and very over range -

Are you experiencing any symptoms ?

Have your tried monitoring yourself on blood pressure, pulse and body temperature - as that helped me when I started self medicating some years ago now ?

I found one dose works best for me that I take at a toilet break in the middle of the night so to dovetail in with circadian rhythm of the body.

[1lolabear in reply to pennyannie]

when I do my next bloods I will definitely use your advice.

I do my blood pressure very often , I have no symptoms at the moment .

[pennyannie in reply to 1lolabear]

My blood pressure and pulse remained stable but I found my temperature tracked up from 35.4 to 36.6 where it tends to hover most days 6 years on.

I find it strange that you had no symptoms of over medication when taking 3 + 1/2 grains and felt no different now at 2 + 1/2 grains - or have I got it wrong ?

Just wondering if you went up in 1/2 grains you could have ' missed ' your best dose - as it's advised to increase in 1/4 grains - I went up weekly - others suggest fortnightly -

The Levothyroxinne would have taken around 6=8 weeks to fully leave your body and in that time frame you slowly build up the NDT in 1/4 grains.

There should come a week when you feel just a little bit different - not 'as well ' -

I became edgey and just uncomfortable in my skin -

so you then just drop down to the previous dose - stay on that lower dose 6-8 weeks and then run a blood test - as this is likely your best dose on NDT at this particular time.

You compare this blood test to your bench mark readings -

likely your TSH is now suppressed with your T3 much higher and a T4 possibly much lower in the range to when taking synthetic T4. and this is ok - with hopefully relief from the symptoms which is, after all, the aim of any medication - relief of symptoms.

If you get to 2 grains you stay on this dose for 6-8 weeks and then run a blood test - if symptoms haven't resolved and your T3 not moved much maybe NDT is not the best treatment option for you.

If T3 is moving and you are feeling improved but not quite ' there ' - start again slowly increasing by 1/4 grains until you feel you've gone a bit backwards - as then you need to drop back down as you may have missed your ' best ' dose option.

either way your TSH will be suppressed and your T3 / T4 will not present similar as to when taking synthetics so your doctor will likely be out of his depth,confused and say something stupid and put the onus back on to you.

[1lolabear in reply to pennyannie]

Hi , I am currently taking 2 and a quarter split into 2 doses a day . It taken me nearly a year to get to where i thought my sweet spot is . ( yes I was definitely over doing it on 3 plus grains looking back )

I am now going to try and drop the quarter and see how I go . Unfortunately I do feel okay on that dose ,

[pennyannie in reply to 1lolabear]

Yes - I understand it can be a very fine line - but you have the power and can do this fine tuning yourself -

though as you also have Hashimoto's to contend with it's likely much harder than for someone like me - without a thyroid - as I haven't any other reason to question my dose -

as I haven't a thyroid misbehaving and giving me a irregular supplies of thyroid hormones - and you'll likely feel better once your thyroid ' stops ' trying altogether - which may of course be around now since you are feeling better with a full spectrum thyroid hormone replacement option.

[1lolabear in reply to pennyannie]

Thank you so much for taking the time out for me , very much appreciated.

Let’s hope the next bloods will be more in line without me feeling unwell .

[pennyannie in reply to 1lolabear]

With NDT its very much about feeling well - I self medicate and haven't seen a doctor for over 7 years now - as I am well - and am not going to put myself back in a firing line for having a TSH at 0.01 -

There are no guidelines specifically for Graves post RAI thyroid so now I've made my own - and considering the latest research - QOL 6-10 years post RAI - why not and why is this toxic substance still a first line treatment and described as a ' therapy ' in what we presume a health care setting ?

ncbi.nlm.nih.gov/pubmed/306...

[1lolabear in reply to pennyannie]

Hi pennyannie

I hope you don’t mind me reaching out again. This is now my third day of cutting a quarter out of my daily dose . I feel symptoms have come back ( horse throat, aches and pains etc ) Will this subside over the next few days ? Should I hold on in there until i hopefully wil level out ? Thanks

[pennyannie in reply to 1lolabear]

No - I don't mind -

So this is just day 3 of having dropped your dose by 1/4 grain :

I think I would stay put and see out a week on the lower dose - if your symptoms don't improve - you can always go back up and see if these symptoms were from dropping the dose a little.

It's more about fine tuning now - it could be a coincidence - we don't know yet - your dose looked a bit high to me - but if it needs to there to alleviate symptoms - so be it - listen to your body as you are now in the driving seat.

[1lolabear in reply to pennyannie]

Thank you so much . I’ll give it a week . Keep fingers crossed 🤞

[Sparklingsunshine]

Are you getting NDT via NHS? If not then frankly its not really any of your GP's business, we are adults with autonomy and can make our own decisions regarding what we put in our bodies.

If you aren't beholden to the NHS for your NDT and you aren't getting any Levo prescriptions then he can be as unhappy as he pleases, but you aren't there to keep him happy. It sounds as though you are doing well on NDT and that's the important thing.

I would maybe tell a white lie, say your private prescriber is happy with your results( even if they are imaginary). If a GP thinks you are under another medical professional that might get him off your back.

Or as you say opt out of NHS thyroid testing. You dont need it, its not required unless you get NHS thyroid meds. If its causing stress then just tell him you are looking after your own thyroid health from now on.

[1lolabear in reply to Sparklingsunshine]

Hi I think I will just opt out of the NHS testing completely . Thank for taking time in your message,

[Sparklingsunshine in reply to 1lolabear]

Probably the best option. You aren't gaining anything from having NHS tests.

[Milburn13]

That's great to hear you're well on thyroid. If it was me I'd give the GP the results and tell them you're feeling well on the NDT so they have a record of it. It's a waste doing the TSH test, as T3 suppresses it. It seems crazy that the NHS don't know this, my NHS Endochrinologist says she only goes by TSH and not symptoms even when she was giving me a little T3. My GP recently told me I'll never get better and that she could no longer help me and told me to go private. I've just gone private and started on Armour.

[1lolabear in reply to Milburn13]

I hope you’re starting feel better in it . Thanks

[Sparklingsunshine in reply to Milburn13]

At least your GP was honest and realised you werent going to regain your health on the NHS treatment regime. But not everyone can afford to go private, its a big assumption on her part, and it does make you wonder what our taxes are being used for.

Its a sad indictment on the NHS that more and more of us are having to turn to private medicine just to get basic care. And its also leading to a two tier system where those who can afford it are going private, and those who cant are becoming more unwell.

[1lolabear in reply to Sparklingsunshine]

It is awful how people are kept unwell . Fortunately I bit the bullet and self medicated with the help of this forum and another I use . I wouldn’t have been able to have done it it without the great advice.

[Sparklingsunshine in reply to 1lolabear]

I'm the same, I self source T3 and feel better for it. This forum is wonderful 😄