Advice please on ridiculous blood results - Thyroid UK

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Advice please on ridiculous blood results

Blanche1960 profile image
20 Replies

Hi guys, back story.. thyroid removed 4 yrs ago (due to malignant cancer) started on Armour thyroid a while ago, after not tolerating T4 and T4/T3 combo…. built up slowly, these are results taken 4 wks ago on 1 and quarter (1 grain (60mcg)

TSH 75(0.27-4.2)

T4 7.1(12-22)

T3 3.8(3.1-6.8)

On last telephone appt day after above bloods… Endo said results were “ ridiculous” (his words) so needed to increase to 1 three quarters which I did over two wks… just been for new bloods for telephone appt tomorrow hopefully results better!

Looks like from what he said last time he may take me off armour and go back to just oral Levo with results like that, sounded surprised as said the dose of armour 1 1/4 is not far off same dose of 150 oral Levo(when results were T4 just out range and low TSH) on his letter to GP said T3 was only just low… surely T3 should be higher on Armour NDT

I’m totally confused and just had enough, would appreciate some advice from you great people on how results should look ( know we all different) on NDT and how to proceed if he wants me to stop Armour and go back on t4!

In some respects I was feeling positive as only baby steps but was feeling little bit better, IM bit more motivated and sleeping better but not as long… 5 hours most instead of 10/12 before (got ME/CFS/FIBRO

Take first dose 10am ish but4/5 hours later feel a bit strange not sure if it’s surge or a drop! Second dose 11pm ish so go to sleep easily now, (terrible insomnia before) but do wake up 5 hours after taking it and don’t get back to sleep properly but do doze!

I think I’d like to continue on Armour with increased dose if needed to see if there’s any more improvements but frightened to death to talk to endo as he’s quite brusk and straight to the point, really quick phone calls too, feel like I have to butt In as he’s trying to wrap phone call up before getting my points across, which I find difficult despite writing it down , all goes to pot… be worse this time as voice been terrible for wks and getting worse, struggling to speak, people asking me to repeat everything, throat voice/box feels strange so see how I go on tomorrow with the new results! Asked endo if it could be the NDT affecting voice last time he said it’s not that it’s the Hypothyroidism!!

I don’t think 2 grains of armour would be too high( depending on new bloods) as lot overweight (endo comparing NDT to Levo dose) lost 4 stone 4 yrs ago before thyroid cancer but put a lot back on since thyroid meds can’t loose for trying, put 4kgs on since NDT despite eating less!

So sorry for long post could anyone please advice on how results may look to feel ok on NDT and how to proceed if Endo wants to stop it!

Many thanks Guys

Blanche

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Blanche1960
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tattybogle profile image
tattybogle

if previous test was only 4 weeks ago , and you increased slowly over two weeks , then its only been 2 weeks on full new dose of 1 and three quarter grains .. which was too soon to test again . Testing should be done after 6 weeks on stable dose, as TSH can take quite a long while to change to new dose . (and T4 and T3 levels can still change too as dose settles in) . If he's in the habit of making decisions after just 2 weeks on settled dose, then finding the right dose will be problematic .

"sounded surprised as said the dose of armour 1 1/4 is not far off same dose of 150 oral Levo" ... where does he get that idea from ?,

unless my brain has gone to sleep here (possible ).... i thought one grain NDT contained approx 38 mcg T4+9mcg T3.

If we say that T3 theoretically has the effect of about 3x T4 ,then 9mcg T3 would be roughly equivalent in effect to 27mcg T4

So presumably 1 grain would be equivalent about (38mcg T4 + 27mcg T4) = 65mcg Levo

1 and a quarter grain is equivalent to about 81mcgLevo

1 and three quarter = 113mcg levo .

Unless i've got my knickers in a twist and remembered that bit wrong ?

humanbean profile image
humanbean in reply to tattybogle

I think "over-valuing" both NDT and T3 is very common in the medical profession. Several companies producing NDT have stated that 1 grain of NDT is equivalent to 100mcg Levo, and I think this is utter nonsense. I would agree with your arithmetic - 1 grain of NDT is "worth" 65mcg Levo.

I also watched a debate several years ago on Youtube (and it is still there) filmed in 2016, by an endo (who shall not be named) who claimed that 1 mcg T3 was 14 times (!!!) more powerful (?) or active (?) than 1mcg Levo. The endo is still working in the NHS. [It may have been 16 times, not 14.]

greygoose profile image
greygoose in reply to tattybogle

It's stupid trying to work out an equivelant, anyway, because, in practice, it depends on how well you convert. Not to mention how well you absorb. At best it can only be used as a very rough guide when changing from one to the other, and then titrate up or down - usually up! - from there. This man seems to think that, according to his 'calculations', the OP should only need 1.25 grains. But, then again, it depends how well she felt on 150 mcg levo, and it would appear she didn't feel well, and that's why she's changing. So, what on earth is the point of that statement! As I said below, I wouldn't put much faith in this endo, personally.

Blanche1960 profile image
Blanche1960 in reply to tattybogle

Thankyou for your reply, yes I queried the T4 and armour conversion, I thought it was equal to 65 mcg after reading the label but Endo said equal to 100 … read both theories on the site so no you've not got your knickers in a twist haha! I’m sure I need increase still so see what tomorrows appt brings with new results too!

As explained to grey goose never done 4 wkly testing before…he was concerned at “ridiculous” results, said I couldn’t carry on much longer if not in range again will put me back on T4… I have put when I had bloods done on my reply to grey goose.

Thankyou for helping

greygoose profile image
greygoose

OK, some questions here:

* Do you always take your Armour on an empty stomach and wait at least an hour before eating or drinking anything other than water? And at least two hours before taking any other medication of supplements?

* What supplements do you take, if any? Do you take any biotin?

* How long was the gap between the last dose of Armour and the blood draw? What time of day was the blood draw?

* How long have you been on 1 3/4 grains Armour? Seems to me you've tested too soon! A TSH that high is unlikely to come down in two weeks even if you were on the right dose - which you obviously aren't. The TSH takes a long time to react. And we should wait at least six weeks before retesting after an increase in dose. So, don't expect too much of these latest labs.

When on the right dose of Armour, the TSH is very likely to be suppressed. But, impossible to say where the FT4/3 should be, because the right level is different for everyone - we all have our individual sweet-spot. But, one would expect the FT3 to be at least over mid-range. Possibly a lot higher.

Asked endo if it could be the NDT affecting voice last time he said it’s not that it’s the Hypothyroidism!!

Well, he's right on that point. NDT wouldn't affect your voice, but being hypo can affect all sorts of things to do with throat and voice - especially as you've not long had surgery. But, all in all, I'm not confident this endo really knows what he's doing. Keep that in mind, and you might feel a little more confident talking to him. I think he probably hurries through the appointment because he's afraid you're going to ask awkward questions that he knows he won't be able to answer.

I don’t think 2 grains of armour would be too high( depending on new bloods)

Rather looks like you're going to need quite a bit more than that. I think 3/4 grains is an average dose. But, as I said, don't expect your new bloods to give you much information, because it was too soon to test.

Endo may want to stop the Armour, but it's not really his choice, is it. It's your body, your life and your health. And, he's supposed to advise you, not dictate to you. So, it you want to stay on Armour, say so. Make your feelings felt. You should be giving informed consent to any changes in your treatment. Tell him you won't consent to going back onto levo, if Armour suits you. :)

Blanche1960 profile image
Blanche1960 in reply to greygoose

Hi grey goose thanks for your replyMy blood test was at 9am last dose of Armour 11pm night before… don’t eat 4/5 hours before taking and nothing for least hour after!

Stopped multi Vit with biotin in one wk ago Learnt all this valuable info from this site!

I never usually have bloods done after 4 wks but because TSH so high he wanted to check again, been on this dose three wks, he did tell me to go straight on to 1 3/4 from 1 1/4 but couldn’t tolerate so did 1 1/2 for a wk then been on 1 3/4 three wks…usually Endo only tests every 2/4 months but since starting Armour had last three appointments a month apart:

1st appt March 1 grain ( no bloods before starting, had them done in Jan

2nd appt April increased to 1 1/4 (no bloods)

3rd Appt May upped to 1 3/4 as bloods ridiculous… results on first post!

Next appt tomorrow, bloods done this morning 9am!

Thanks for your helpful advice as always will try and stand my ground!

greygoose profile image
greygoose in reply to Blanche1960

As we're always saying on here, taking a mult-vit is not a good idea, anyway. It is highly unlikely to help you in anyway, for many reasons, and could even do you harm by containing things your really don't need, like iodine, calcium, etc. Have you had your main nutrients tested: vit D, vit B12, folate, ferritin? The only things that will help you are the things you need, taken correctly. In a multi-vit, by definition, they cannot be taken correctly.

Blanche1960 profile image
Blanche1960 in reply to greygoose

Hi Thankyou doesn’t have calcium or iodine it’s wassen magnesium b with no additives etc but still probably not right do will get tested again and buy separate! My gut does seem to be better since stopping Levo, used to get lot stomach pains, bloating etc!

Have stress/anxiety/inflammation going on so probably not absorbing any thyroid hormones very well tbh!

greygoose profile image
greygoose in reply to Blanche1960

OK, so in other words, it's a B complex with magnesium. Not worried about additives. It's other nutrients that make multis a bad idea - like iron, which will block the absorption of all the vitamins. So, it's not really a multi at all, then.

But, it's a very bad B complex. It contains cyanocobalamin (B12) and folic acid, the least bio-available forms. A good B complex contains methylcobalamin and methylfolate. Thorne Basic B is a good one. It also contains vit C, which will block the action of B12 - which you won't be getting much of, anyway.

And, it contains magnesium oxide, which is one of the least bio-available forms of magnesium. So, all in all, total waste of money.

Blanche1960 profile image
Blanche1960 in reply to greygoose

Ah Thank you for this info, sorry if I mislead you, wrong choice of words again haha brain fog 😫 This is very useful info I will try your recommendations, always took magnesium and had folic acid tablets from dr before so thought this might help, such a minefield with so many products available… but slowly learning from great knowledgeable people like you on here! Thanks again

greygoose profile image
greygoose in reply to Blanche1960

Yes, with supplements you have to know what you're doing - and I wouldn't pretend to know all the ins and outs.

But doctors know nothing about nutrients. They don't know that just taking one B vit in isolation just isn't going to do very much - even though it may raise your levels - because all the Bs work together, and need to be kept balanced. So, a B complex is good, but with the methyl form, and no vit C.

Magnes itself is complicated because there are so many different forms, and you need to know what you want it to do for you:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

Blanche1960 profile image
Blanche1960 in reply to greygoose

Ah that’s great info Thank you so much will look for the more suitable products, maybe try the magnesium chloride as kidney function not been very good for 7 yrs after surgery! Not sure if this will help or not but worth a try, instead of wasting money on wring stuff!Thanks grey goose you’ve been great as usual!

greygoose profile image
greygoose in reply to Blanche1960

You're very welcome. :)

SlowDragon profile image
SlowDragonAdministrator

There’s no point testing thyroid levels until 6-8 weeks after any dose change

TSH is very slow to respond

We have some members on here on 3, 4 or even 5 grains of NDT

You need what you need

Once you get to optimal dose and body starts to heal, especially your gut….you may find you can reduce a little over time

Essential to regularly retest vitamin D, folate, ferritin and B12

Multivitamins never recommended on here

Too little of what we need, cheap poorly absorbed ingredients and most contain iodine not recommended for anyone on replacement thyroid hormones

Blanche1960 profile image
Blanche1960 in reply to SlowDragon

Thankyou, will take this on board, sorry should have explained better it’s Wassen magnesuim b tablets I’m taking at mo, it’s got magnesuim, b vits, folic acid and biotin, stopped wk before bloods… will get separate ones next time! Take better for you vit d spray too!

Will get all these checked!

Many thanks

adin profile image
adin

As the tests shows, I think your dose will be around 3 grains. You definitely need a dose increase as soon as possible

Blanche1960 profile image
Blanche1960 in reply to adin

Thankyou so much!

Brightness14 profile image
Brightness14

You just have to wait and adjust slowly to get the best result. I have no thyroid either and take NDT Thyroid s. I did try Amour but it never worked for me. I take 2.25 in the summer and 2.5 in winter, I feel well and my blood tests are perfect. I just takes time. I split the dose 6am and 2pm.

Blanche1960 profile image
Blanche1960 in reply to Brightness14

Thank you, sorry you no thyroid too, good to hear your doing ok on your doses… I’m going to ask to increase it today at my appointment to 2 grains and see how I go, know I’m still under medicated before he tells me my results! Thanks again really appreciate this!

Brightness14 profile image
Brightness14

I forgot to mention I treat myself and take a yearly private blood test.

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