Latest results: Hello would be grateful if... - Thyroid UK

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mcooper profile image
40 Replies

Hello would be grateful if someone could comment on my latest bloods , Gp surgery called me in for bloods not sure why but suspect it’s the next step in trying to stop my t3 I take 75 mcg levo plus 5mcg in the morning and 5mcg lunchtime. I don’t have any other vitamin levels at the moment. Generally feel ok , never brilliant but so much better since intro of t3. Serum free t3 level 4 pmol/l range 3.10 -6.80 pmol/l Serum tsh level 0.04 mlU/L range 0.27 -4.20 mlU/L would be grateful for any advice as to whether these results are ok? Got got Gp appointment Wednesday. He is great but unfortunately bound by the ccg who have already sent me to their nhs endo and is but retiring soon so expect resistance from his successor. Many thanks

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SeasideSusie profile image
SeasideSusieRemembering

Mcooper

I expect your GP is freaked out by your low TSH, but taking T3 will lower, even suppress, T3 which even doctors who prescribe it don't seem to understand.

Your FT3 is still very low in range and you could probably do with an increase in your dose of T3.

Was FT4 tested as well?

mcooper profile image
mcooper in reply toSeasideSusie

Thanks for replying no Ft4 tested, I think he would have a heart attack if I suggested more t3 but am resigned to the fact I will probably have to source my own soon. What would you suggest upping the t3 to 10 mcg in the morning or just having a third 5mcg dose later in the day?

SeasideSusie profile image
SeasideSusieRemembering in reply tomcooper

I think that’s a case of experiment. I know that SlowDragon divides her dose into 3, I divide mine into 2 and that suits me.

mcooper profile image
mcooper in reply toSeasideSusie

Thanks Susie and Slowdragon for your replies, I will try slowdragons approach below. I might get the D1o2 test done privately to check my conversion the NHS professor I was sent to says NHS don't accept it as its flawed. I have male cousin on my fathers side who is also Hypo too.

SlowDragon profile image
SlowDragonAdministrator in reply tomcooper

We are all different...some people can take full daily dose all in one go

Some need to split into 2 doses roughly 12 hours apart

personally I find 3 doses at equal 8 hour gap works for me. 7am, 3pm and 11pm (After much experimenting)

On endo advice initially start on 2 x 5mcg....7am and 5pm

And 25mcg reduction in levothyroxine (from 125mcg down to 100mcg);

After 6 weeks and blood test....third 5mcg dose T3 added and no further reduction in levothyroxine (endo advised T3 at 6am, noon and 6pm)

Then had positive Heterozygous DIo2 result

After this 7am dose T3 increased to 10mcg (so total of 20mcg per day)

Like SeasideSusie i found I need good Ft4 and Ft3 Levels. On just 100mcg Ft4 was dropping at each test

After several months being able to be far more active after T3 added, increased Levo up slowly. Initially to 112mcg. Then 125mcg

More on my profile

Discovered by accident that taking last dose nearer bedtime improves sleep. (Doesn’t help everyone)

greygoose profile image
greygoose

I think your doctor will probably want to talk to you about your low TSH. It scares them to death! lol

Just tell him that a) that's what happens when you take T3 and b) it doesn't matter anyway, it's low because you don't need it anymore. Suppressed TSH does not cause osteoporosis or heart attacks! :)

SlowDragon profile image
SlowDragonAdministrator

You need to know Ft4 as well

Many of us need good Ft4 and Ft3

75mcg levothyroxine may be too low

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last 5mcg dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

mcooper profile image
mcooper in reply toSlowDragon

Thank you will ask for this to be tested when I see the doc

SlowDragon profile image
SlowDragonAdministrator in reply tomcooper

Obviously you need TSH, Ft4 and Ft3 tested together at same time

If GP won’t then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Very important to test vitamin levels regularly, at least annually, ideally twice year

What supplements do you take.

mcooper profile image
mcooper in reply toSlowDragon

Thank you for the link From

Past experience I struggled trying to do the finger prick test but will ask the gp to do a full set of thyroid and vitamin tests. I take vitamin d and magnesium and selenium at the moment ( when I remember)

SlowDragon profile image
SlowDragonAdministrator in reply tomcooper

Yes it can be hit or miss doing DIY finger prick

Medichecks or Blue horizon offer private blood draw, at lots of different locations (for a fee)

Tips on how to manage Finger prick test here

healthunlocked.com/thyroidu...

Ask GP to do ultrasound scan too

mcooper profile image
mcooper in reply toSlowDragon

Thank you I will bear that in mind, I had an ultrasound 4 years ago when I had a huge lump in my neck , the scan was done through private healthcare following gp referral, it was benign and it was those private bloods that showed up the hashimotos antibodies. This was after years of feeling unwell but NHS do not test for the antibodies hence I slipped through the net for a long time. ( I now know these antibodies could have been a part of fertility problems ( one child conceived normally in 2000 but after this failed to conceive for a second time, spent thousands on failed IVF and a couple of years later a private test showed the thyroid antibodies)

SlowDragon profile image
SlowDragonAdministrator in reply tomcooper

Very sorry to hear this. NHS testing of thyroid problems is totally inadequate

I lost 26 years on inadequate treatment...before joining here

First step is to get FULL thyroid and vitamin testing

Ft3 is on low side.

Good vitamin levels are essential

Vitamin D at least around 80nmol and around 100nmol may be better

This Vitamin D test is just 4 drops of blood

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator in reply tomcooper

With hashimoto’s you also need B12, folate and ferritin tested regularly

Phoenix605 profile image
Phoenix605 in reply tomcooper

I used to get a blood draw kit from medichecks for the bits the GP wouldnt order and ask the nurse to fill it when they did the GP ones, they never quibbled as it takes 10 seconds and they already had the needle in my arm - worth a try as they were always sympathetic to the fact the GP wasnt willing/able to order the tests i wanted

mcooper profile image
mcooper in reply toPhoenix605

That is a good idea, thank you, might try that.

SeasideSusie profile image
SeasideSusieRemembering

Thanks Squeezie. Edited it now. I really must stop doing 2 things at once, brain can no longer cope 🙄 (Eating and responding on forum, obviously the eating was taking precedence 😂 )

martinpatrick profile image
martinpatrick

Your ft3 is far too low you should take another 5 in the am would not bother multi dosing some take t3 all together. If you feel worse as day goes on but not all do. After a week take another t3 5. Make sure you have not taken any t3 for at least 8 to 12 hrs before test. Tsh means nothing when on t3

martinpatrick profile image
martinpatrick

Also lower levo to 50. When you add t3 5 mg

martinpatrick profile image
martinpatrick

And down to 25 when you add another 5mg on top so you would be on 25 levo and 20 t3 or 50 levo depends how you feel. Some people just stop t3 altogether. Basically 10 t3 is same as approximately 30 levo

SlowDragon profile image
SlowDragonAdministrator in reply tomartinpatrick

Some people actually need GOOD levels of Ft4 and Ft3

martinpatrick profile image
martinpatrick

Also make sure your vit d iron and cortisol are ok

martinpatrick profile image
martinpatrick

First add 5 mg t3 for 2 weeks but definitely only take 50 levo or you could overdose. Y

Then down again by 25 and take another 5 t3. See how u feel. If after first t3 increase you feel ok leave it at that so you would be on 50 levo plus 15 t3

SlowDragon profile image
SlowDragonAdministrator in reply tomartinpatrick

That regime wouldn’t work for every

martinpatrick profile image
martinpatrick

In earlier post I meant some people stop t3 altogether. Ft3 can be bought in Greece over the counter . You would need to go to Athens or large city to get them and they are dirt cheap or you can buy metavivmetavive 1 is equivalent to 25 levo plus 5 t3.metavive 2 50 levo and 10 t3. No prescription needed. It has fillers either. They cannot say how much t3 or t3 is in it as sold as supplement and legally cannot say. Many people do brilliant on it not too expensive order on line. You could stop what u take and take metavive 2 twice a day. Sold online by precepts. Metavive 2 twice a day is 100 levo plus 10t3

martinpatrick profile image
martinpatrick

Omg some people stop t4 I meant

mcooper profile image
mcooper in reply tomartinpatrick

Hi Martin thank you very much for your replies. I am also considering moving to metavive it was suggested by dr Peatfield who I saw before he retired suddenly so I never got a follow up appt. my cortisol is ok dr p checked this via Genova test and cut D is good I take 1hux d3 tablet once a week.

Batty1 profile image
Batty1

It’s the low TSH most likely they will try to remove your T3 meds .

mcooper profile image
mcooper in reply toBatty1

Hi Batty1 yes that is what I’m worried about my tsh was borderline when I was first given a trial of t3 but that was Via a private endo. It made life worth living again.The ruling then was if an endo prescribed it the nhs would honour it. Now the goalposts changing so me and any others at the practice on t3 have been sent to see nhs endo- the one who wrote the edict stopping t3 .This professor thinks I can be weaned off t4 and t3 despite me having hashimotos antibodies! I have said no I do not want to tamper with my existing meds . Am waiting a follow up appointment with this nhs endo,during which time my gp will continue to prescribe. Go retires end of March and I expect the fun to start then with his replacement. ultimately may have to go down the self medicate route but that comes with its own worries.

Batty1 profile image
Batty1 in reply tomcooper

I feel bad for NHS users when it comes to battling for thyroid medications, sadly I think all of us no matter where we are in this world have similar issues when prescribed thyroid meds that help us to only have our doctors pry them out of our hands weather its because of lab results or funding and if you grump to much your labeled a difficult patient that needs mental help. It’s a sad situation health wise.

mcooper profile image
mcooper in reply toBatty1

Totally agree, I have gone private initially through work healthcare provider, but they don’t cover medication costs. For the initial trial I paid 280 for a trial of T3 and then got it on nhs as the private endo wrote to my gp. It’s a vicious circle I need to be well to work. Thanks to this site at least I know of other options such as metavive and have been recently given a contact to source T3 privately.

Tythrop profile image
Tythrop

Don't have any advice but read professor Toft's article he is based in Edinburgh. Just Google "thyroid. Toft. Edinbrough. Medical publication. Might be Tofft with 2 f's

mcooper profile image
mcooper in reply toTythrop

Thank you Tythop

vocalEK profile image
vocalEK in reply toTythrop

This is the most recent of his writings. Back in 1990s he was following the strict company line. ncbi.nlm.nih.gov/pubmed/309...

BMC Endocr Disord. 2019 Apr 18;19(1):37. doi: 10.1186/s12902-019-0365-4.

Time for a reassessment of the treatment of hypothyroidism.

Midgley JEM1, Toft AD2, Larisch R3, Dietrich JW4,5, Hoermann R6.

SlowDragon profile image
SlowDragonAdministrator in reply toTythrop

It’s Prof Antony Toft

But has now retired completely

There’s a new endo taken over his private patients

Tythrop profile image
Tythrop in reply toSlowDragon

What about Prof Colin Dynan Cardiff University?

SlowDragon profile image
SlowDragonAdministrator in reply toTythrop

Is one of leading exponents of T3 combination therapy

thelancet.com/journals/land...

mcooper profile image
mcooper

thanks vocalEK, I will be printing this off and adding it to my evidence pile for next docs visit!

AlasdairM profile image
AlasdairM

Hi

Your results look like mine at 9am or about 1.5 hours after taking t4+t3. But if I'm tested 10:30, my FT3 will be mid range and I'll have stopped feeling cold. I'm fortunate in having an informed GP - we came to understand that if my TSH was in range that I'd lost further thyroid gland function and needed increase in medication. We either added 25mg T4 or tried adding an extra T3 (starting on alternate days).

Remember this re levels; no one knows on that test day, how fast your digestion got oral T3 into your blood - it's a snapshot of constantly varying levels.

If you're in England, then provided your need for T3 has been confirmed in the last few years by a consultant Endo., prescribing should continue, supported by annual test results, unless your symptoms decline. There is not a requirement for clinical need to repetitively proven. GP would have only to satisfy NHS-England regulation for continuing T3 prescription to be permitted; not be bound by funding driven policy "choice" by a local CCG.

mcooper profile image
mcooper in reply toAlasdairM

Morning Alasdair, thanks for your reply. I am in England (Harrow) You are lucky to be getting the support you need from your GP practice. My GP is great but retiring soon and its the local CCG that are on his back to get people off T3. It was a private NHS that prescribed to me in 2015 and I believe that it has to be prescribed by an NHS endo now in order for NHS to prescribe it. That is what I have been led to believe in any case but the NHS seem to cherry pick the rules. They have sent me for bone scan all ok, and I have said that the positives taking T3 far outweigh any risks. Many thanks

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