NEW BLOODS TAKEN 4TH LOT PLEASE ADVICE .๐Ÿ˜Š - Thyroid UK

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NEW BLOODS TAKEN 4TH LOT PLEASE ADVICE .๐Ÿ˜Š

Rmichelle profile image
Rmichelle
โ€ข35 Replies

Hi guys these are my 4th lot of bloods since July, hyperthyroid/hashis.on 5mgs of carbimazole one daily and i see endoc on Tuesday 12th. My tsh has risen again since November where it was 3.77. Please tell me what you think and also doesnt t3 and t4 have to be in mid range, this is why i still dont feel great.thanks all in advance my friends.xx๐Ÿ˜Š what do they mean with the mro-under hospital?

Hope you can all read if not i can type out.

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Rmichelle
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35 Replies
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Nanaedake profile image
Nanaedake

Eyes are not what they used to be, I can't read pic on phone.

Rmichelle profile image
Rmichelleโ€ข in reply toNanaedake

Can you enlarge?

Rmichelle profile image
Rmichelleโ€ข in reply toNanaedake

Tsh 5.27 lab-0.30 -4.20

Ft3 4.4 lab 3.1 6.8

Ft4 12.8 lab 12.0 22.0. Xx

Nanaedake profile image
Nanaedakeโ€ข in reply toRmichelle

So you still have no confirmation as to which thyroid condition you have - Hashimotos or Graves disease? Still no antibodies results?

Rmichelle profile image
Rmichelleโ€ข in reply toNanaedake

No i am definitly hashis as i was tested for tpo back in september 865 lab 0.00-60.00. But endo refuses to do tsi as he said ALL hyper patients have graves and said i do but i disagree that i have that.

Nanaedake profile image
Nanaedakeโ€ข in reply toRmichelle

Oh, at least you got the TPO test back then. That's one step forward. So is your Endo now going to get you off carbi if you're Hashi's rather than having Graves disease?

He says, 'ALL hyper patients have graves disease', but you're not a hyperthyroid patient if you have hypothyroidism. You can't be hypothyroid and hyperthyroid at the same time. It doesn't make sense does it?

Rmichelle profile image
Rmichelleโ€ข in reply toNanaedake

Your guess is as good as mine about what endo will do, my last one i have got rid of as he was useless, so im seeing someone different on tuesday, when i challenged him about 3 weeks ago about meds he said the meds will be the same regardless!!!em.๐Ÿ˜Š

Nanaedake profile image
Nanaedakeโ€ข in reply toRmichelle

If possible, write down your questions before the appointment.

You could ask new Endo what he thinks your diagnosis is.

You could ask how Graves patients are normally diagnosed.

You could ask for a copy of results that informed your diagnosis so you can discuss them with him.

Rmichelle profile image
Rmichelleโ€ข in reply toNanaedake

Yes i have already started a sheet with questions on as i think i need answers about thyroid scan aswell ad i have thyroid nodules and a thickening of the isthmus.

I have alot of questions and eill post anything he does say on here with regards to meds as im not being fobbed off nanaedake.x

Clutter profile image
Clutter

Rmichelle,

I thought you were overmedicated in November with TSH 3.77 and now TSH is over range and FT4 almost bottom of range and that may be why you are not feeling great. However, if FT4 12.8 is 30% higher it will be 16.64 which is mid-range, and FT3 4.4 is respectable.

There's no point in conflating advice given to hypothyroid patients taking Levothyroxine with your results while taking Carbimazole. I don't know that there exists guidance on what are optimal FT4 and FT3 levels for patients on Carbimazole titration. I've certainly never seen any.

Rmichelle profile image
Rmichelleโ€ข in reply toClutter

Hi clutter with them results im hypothyroid yes? Im on 5mgs do you think he will reduce to 2.5 mgs or lower or even do abit of block and replace? Bit confused at moment and dont want the wool pulled over my eyes by endo on tuesday. ๐Ÿ˜Š

Clutter profile image
Clutterโ€ข in reply toRmichelle

Rmichelle,

You aren't hypo because FT4 and FT3 are within range. I think TSH is too high now though and possibly FT4 too. I should think he will reduce dose.

I very much doubt he will be doing B&R which involves high dose Carbimazole to block thyroid production and Levothyroxine to replace it.

Fruitandnutcase profile image
Fruitandnutcase

Looking at that it says you are on carbimazole and T4 (levothyroxine) That is block and replace. I didnโ€™t realise you were also taking T4.

My TSH rose when I was treated with carbimazole (I think that is what it is meant to do) to block all thyroid production then it rose to over 7 because I was left taking too high dose of carb for too long without being tested.

At that point I saw an endo who added T4 (to replace the thyroid hormone) and when my TSH came down to about 0.56 my levo and Carb were stopped and I was discharged.

In my case starting levo reduced my TSH and adding increasing quantities of it reduced it until it was where my endo wanted it to be if that makes sense.

It rose a bit after I stopped my block and replace drugs and although Iโ€™d like it to be below 1 because I felt best at that level, it is well within โ€˜the rangeโ€™ and there is no way the NHS will ever do โ€˜fine tuning โ€˜ so I guess Iโ€™m stuck with it at that level.

Iโ€™m afraid I havenโ€™t a clue what โ€˜mro under hospitalโ€™ means.

Rmichelle profile image
Rmichelleโ€ข in reply toFruitandnutcase

Hi im not on block and replace fruitandnut just carbi 5mgs.

Fruitandnutcase profile image
Fruitandnutcaseโ€ข in reply toRmichelle

Thatโ€™s weird - you need to question someone and ask why it says โ€˜on carbimazole and T4 โ€˜ in the second paragraph where it says โ€˜ Free T4 if you are only on carbimazole.

Rmichelle profile image
Rmichelleโ€ข in reply toFruitandnutcase

Yes im confused now-i dont know why they think im on levo as i never have been.x

Clutter is telling you that your test results show you are being titrated with levo t4 - that's what the patient doesn't know - if it is the recommendation to put you on t4 or whether the notes are correct. That's why the test results shows that if your results are 30 percent higher within recent assay tests your levels are ok. But you are hypo with raised TSH.

The NHS does not want the patient to decipher notes and results - so your endo will have to explain them to you.

Rmichelle profile image
Rmichelleโ€ข in reply to

Where does it say about levo?am i missing something g?

Clutter profile image
Clutterโ€ข in reply toRmichelle

Rmichelle,

There is a note under Free T4 which says FT4 may be 30% higher and FT3 15% higher in hyperthyroidism.

The lab report seems to assume you are on Carbimazole and T4 (Levothyroxine) ie Block and replace.

Rmichelle profile image
Rmichelleโ€ข in reply toClutter

Yes just spotted it, i really dint know where they have got that info from!!

Clutter profile image
Clutterโ€ข in reply toRmichelle

Rmichelle,

They make assumptions. Don't know why. Just makes them look stupid when they get it wrong.

Rmichelle profile image
Rmichelleโ€ข in reply toClutter

Well they shouldnt do it- do you know what it means at the top of the letter- mro-under hospital for this and then tci (i think this means target controlled infusions) i thought this is something given itravenously?๐Ÿ˜Š

Clutter profile image
Clutterโ€ข in reply toRmichelle

Rmichelle,

I've no idea what the abbreviations mean.

Rmichelle profile image
Rmichelleโ€ข in reply toClutter

Thankyou for your help clutter

bantam12 profile image
bantam12โ€ข in reply toRmichelle

MRO is "medical review officer"

bantam12 profile image
bantam12โ€ข in reply toRmichelle

TCI usually means " To come in "

Rmichelle profile image
Rmichelleโ€ข in reply tobantam12

That makes sense-more sense than what i thoughtvit meant.ha i thought it was something far more techinical. Thanks Bantam12.x

bantam12 profile image
bantam12โ€ข in reply toRmichelle

Re "on carb and T4" I see it as meaning the results may be 30% and 15% higher in hyperthyroid patients on Carb and T4 so it's a general comment rather than relating to you.

Rmichelle profile image
Rmichelleโ€ข in reply tobantam12

A ha- clearer, its just a comment a guideline-thankyou.x

โ€ข in reply toRmichelle

Refer to lab results as mentioned in Clutters second reply concerning

levothyroxine - very confusing as you are on carbi only - so the notes don't make sense - undated and no reference point.

The test results don't show ferritin levels dated - you have two autoimmune conditions and they are being treated separately rather as linked conditions.

Rmichelle profile image
Rmichelleโ€ข in reply to

Ferritn was only done recently as thats when doc wrote to me i need iron supplements but will get them done on next blood test.i just dont know why they think im on levo- its a right shambles.xx

โ€ข in reply toRmichelle

yep that's the one question you must ask your endo - you have to tell him you are on carbi only as he will assume from the test results you are on levo as well. As for the coeliac disease and hashis both conditions indicate you may have to be gluten free.

So you can mention your other autoimmune condition and ask

about ferritin and your gluten free diet. Will the endo have your new ferritin levels when you see him - ha !ha! no need to ask that one!

Rmichelle profile image
Rmichelleโ€ข in reply to

Oh my god no he wont!! Thanks for that g i will get them to fax them across, completly forgot๐Ÿ˜จ they have on record that i am celiac and they know i have hashis but this made no difference to the last one-it fell on deaf ears!!

Rmichelle profile image
Rmichelleโ€ข in reply to

Just tried ringing surgery but it is closed so it will have to do monday.

Clutter profile image
Clutterโ€ข in reply to

Gadrantgg,

Clutter isn't telling Rmichelle she is being titrated with Levothyroxine. She is being titrated with Carbimazole.

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