absorption test

[Lisalee123456]

has anyone had the absorption test and if so how did it go??

[Judithdalston]

Absorption test for what?

[Lisalee123456 in reply to Judithdalston]

sorry for thyroxine

[CaroMaxx]

I didn’t know there was such a thing,! Sorry I’m not answering your question but would be interested in more information 😊

[Lisalee123456 in reply to CaroMaxx]

Well basically I have no thyroid as it was removed so naturally hormones replaced by thyroxine started on 75mg and now on 275mg daily and my tsh is over 100 so it’s almost like my body is just saying nope don’t want that and not taking any in- finally now they looking into it

[sparkly in reply to Lisalee123456]

Omg your on 275mg t4 and still tsh over 100 😲Have you ever had a trial of t3 or is there a reason why you can't?

You must be dragging yourself to do anything, feel for you

[Lisalee123456 in reply to sparkly]

Yep hence why now I’ve had enough of them just keep raising the dosage it’s clearing not work so we need to look at other options or reasons now- I have thyroid cancer so they removed my thyroid so I can understand they have a path to follow but it gets hard- but I take the good days as good days and bad days as bad it’s all we can do isn’t it x

[Mlinde]

Don't you mean conversion of T4 to T3?

[rick2525]

Do you mean the DIO2 gene test ?

[Lisalee123456 in reply to rick2525]

No it’s an absorption text to see why my body isn’t absorbing any thyroxine

[helvella Administrator Thyroid UK]

Below is a procedure note for a levothyroxine absorption test from Manchester University NHS Foundation Trust.

Such tests have been mentioned but few have had them.

Levothyroxine Absorption Test

To investigate cause of persistently elevated TSH in primary hypothyroid patients on levothyroxine therapy using oral administration of a high dose of levothyroxine and monitoring TSH and FT4 levels post absorption.

Cause may be non-compliance with medication or due to issue with absorption of levothyroxine.

Indication

To investigate patients with persistently elevated TSH despite apparently adequate levothyroxine replacement therapy.

Side effects:

• Possible tachycardia and palpitations. Patient should have observations every 60 mins.

Requirements

• Levothyroxine 1000mcg orally, or total weekly Levothyroxine as a single dose, after discussion with

consultant endocrinologist

• iv cannula

Procedure

PATIENT PREPARATION

• Omit usual dose of levothyroxine on day of the test.

• Medication review, document in notes (patient to bring all usual medications).

• 0 hour – cannulate, sample for TSH, FT4

• Give levothyroxine orally as a single dose with water.

• Take bloods for FT4 at 60, 90, 120, 180 minutes.

• Bloods for TSH, FT4 at 240 minutes.

TEST

• Insert cannula and perform observations at baseline and every 60 minutes

More of this document here:

mft.nhs.uk/app/uploads/2023...

Judithdalston CaroMaxx Mlinde rick2525

[helvella Administrator Thyroid UK in reply to helvella]

What I intensely dislike is that the first cause mentioned is non-compliance . That is, they jump straight to blaming the patient.

My view turns that entirely upside down, the test identifies issues with absorption. Then, if they really feel the need, just a side observation that it would also identify non-compliance.

But in the case of a patient who has got to the stage of begging for help, their alleging non-compliance, which is the effect of making it the prime cause, seems insulting and demeaning.

I also do not think it satisfactory not to require the same product as the person has had dispensed. We have seen people who seem to find one or more products just do not seem fully potent for them. Doing this test possibly with a different formulation could miss the issue.

[birkie in reply to helvella]

Very interesting helvella👍 I'd like them to take me to a testing facility and give me thyroid medication over a period of 2wks because my absorption is due to constant diarrhoea [ you no doubt know my issue with thyroid medication].

I'm OK on day one , it's day 3 and 4 where to trouble starts and it's always the same ..grumbling bowles then awful wind then terrible cramps then any food I eat gets passed right through with awful cramps sweating ect...not to mention the awful metallic taste in my mouth every morning, and the headaches ...I have never felt well on any thyroid medication since full thyroidectomy in 2019😢

[helvella Administrator Thyroid UK in reply to birkie]

What you suggest makes so much sense. But there really is no proper escalation plan for thyroid issues. And I think that is universal - not just UK.

This absorption test might be of some use in proving what is happening. But I know how unhelpful your medical support has been. Nonetheless, maybe worth asking - they might view it as a way of ducking out of things but if it provided some answers, would likely be worth it.

[birkie in reply to helvella]

I have a dream 😴 and I think it was slowDragon who mentioned it also....why can't we who suffer with gastric issues inject the solution, like diabetics do??Why as no one thought of this 🤔 or have they , but we are not aware of it🤷‍♀️

For instance my TSH is way over range..off top of my head I think it's 45.6 done on May 31st probably way worse now !!

Let's just say I was admitted to hospital tomorrow with heart palpitations, they draw blood and see my thyroid results..very hypothyroid...what would they do??.....immediately give my a big dose of thyroid medication ..thinking I've been a very naughty girl in not taking my thyroid medication 😡

I struggle taking the 12.5 micrograms so imagine what I'd be like if they tried 100..if after telling them I cannot take it like that because of what it does to my gut would they or could they give me it intravenously or by injection.....would be interesting to know 🤔

On another topic ...if your hypo and taking regular thyroid medication and your in a coma let's say through an accident and it's nil by mouth how do they administered the thyroid medication to the patient 🤔???

Just some of the things I ponder over guys😄😄😄

[helvella Administrator Thyroid UK in reply to birkie]

There are injections of both levothyroxine and liothyronine technically available. Price and getting their heads around the concept seem likely to make them almost entirely unavailable.

In your case, I think it could well be a viable step towards getting answers even if you wouldn't get them forever on a regular basis.

Levothyroxine sodium 200micrograms/1ml solution for injection ampoules (SERB)

6 ampoule pack - 57500 (yes - £575)

dmd-browser.nhsbsa.nhs.uk/a...

Liothyronine ampoules also available but they are entirely unpriced!

Screenshot of SERB levothyroxine on dm+d

[birkie in reply to helvella]

WOW.....no wonder They don't offer us this option 😲

[sparkly in reply to birkie]

Hi Birkie, so still no joy with any of it.I had mentioned before if thyroxine could taken vaginally but just Googled taken rectally. Has this been spoke about or tried. Just clutching at straws for you.

I have taken meds rectally to avoid the liver in the past

[birkie in reply to sparkly]

Is it in tablet form ?? Like a pesedrie [ probably spelt that wrong] I'd just be bothered it being put in the rectum as my problem is bowle related, would it absorb without affecting my colitis 🤷‍♀️

[sparkly in reply to birkie]

Sorry Birkie forgot to add pic. It's a conversation you could have with your gastro people or endo

.

[arTistapple]

Maybe birkie would be interested in this?

[birkie in reply to arTistapple]

😄 just reading them Tistapple👍 I've had a rotten 4 days tried going back on the T4 again...and again ended up with the same gastric issues 🤮🤮 I'm afraid that's it, no more trying... but thankfully my son as now given me the money to contact rosway clinic to obtain the natural stuff, so that's my plan tomorrow 👍

Although I'm as mad as hell being on disability money and having to get my son to pay for my thyroid medication 😡 simply because no endocrinologists will prescribe it, my gp now as the report from the last endo I saw on June 21st...so guess who'll be bugging the life out of my surgery tomorrow.....ME!!!! I need answers and fast because my son can't keep giving me money for thyroid medication 😡

[arTistapple in reply to birkie]

I am glad you have a way forward. It’s probably a good time to start bugging our MPs too.

HowNowWhatNow has written an interesting post today about ‘persistence’.

I too am in the process of explaining to an eminent cardiologist why I can’t have stents! It’s impossible to explain to medics with incredible ‘tunnel vision’. It’s an easier way for them to operate but so not helpful for patients who fall outside their tick box system.

It’s on and on and on.

[birkie in reply to arTistapple]

You know eventhough I'm not a 100% I would love to contact my mp about how I have been treated this last 5 years without a thyroid ,and not getting the correct thyroid medication by our nhs system, but what puts me off is....I really don't think he/she would care😡 I know that sounds like a cop out but it takes energy to do those things and doing posts on here does me in 😄 but one thing..if I get fobbed of by my gp in relation to the report from the endo then I will need to make a formal complaint 👍

[arTistapple in reply to birkie]

Yes it’s blooming hard! Anyway a complaint to your GP practice probably should be your first port of call. PALS might be useful to help you sort that out - maybe. A nurse once told me that I should put my ‘complaint’ forward, couched as an ‘opportunity’ for the practice to learn from. I see her point but again it’s frustrating having to write in such a way to protect their fragile egos. Us patients can’t afford egos, we just suffer ill health which is their business - or is it?

I particularly deeply object to those notices I find in my (empty of patients surgery) that says staff do not tolerate abuse. Off course violence is unacceptable but legitimate discussion is not allowed either. Where are the lines drawn on this?

However, they hold all the cards, so to speak. I can’t help thinking ‘payback’. Although why I do, when I have had such awful consideration down the years, I also wonder “What is there to lose?”

[birkie in reply to arTistapple]

YOUR so right in what you just said...

Here a little story...I have a circle of friends who I don't really go out with much now [ think you know why🥵] but I had the pleasure of chatting to them a couple of weeks ago, within our circle there are 4 who work for the nhs in some capacity...receptionist, nurse practitioner, ect.

The way they spoke about the patients was really appalling, one instance one circle member was relaying a story that just happened recently about a 90 year old lady who came to the doctors to make an appointment, the circle member to a horror story telling this elderly woman that she should make her appointment the correct way by going home and ringing between 8am and 9am.

The elderly lady fought this saying she really needed to see the doctor.

This circle friend went on a rant about how patients have no idea just how hard there job is...especially when we have silly people like this woman just coming in off the street hoping to see a doctor.

Then the other ones jumped in saying much the same 😡

Truthfully if this is the way these people act no wonder the nhs is so bad😡 needles to say I made my excuses and left....I truly could have screamed at them....just listen to yourselves..would you like a family member of yours treated like that? No I think not😡

RANT OVER!!!

[arTistapple in reply to birkie]

Yes the service is not designed for the patient. It’s just a workplace that pays these horrible people’s wages. One day however they will need the services (ha!) of a doctor. It would be Karma if they met someone similar to themselves.

[AtoZ24]

The Manchester uni procedure seems to be similar to what a veterinary surgeon does to test say, a cat. They take blood and test to see the result, then titrate the drug in stages, monitoring the levels until a satisfactory result is obtained. This then becomes the dose administered to treat the (usually) hyperthyroid patient! Would that we were able to get the same level of care!!

[helvella Administrator Thyroid UK in reply to AtoZ24]

The procedure itself seems fine! And it would be marvellous to have that level of testing available.

We see doctors denying that taking a tablet before a test makes any difference. Then this which entirely based on the effect of a tablet in the ensuing hours! Totally contradictory.

[Lisalee123456 in reply to helvella]

So after speaking to my consultant it seems that I will be given 1000mg of tyroxine on an iv then over the course of 4 hours will be monitored with blood tests to see what happens? So I go fasted from 9pm night before and no medication at all in the morning- my question is though does this rule out how I process the tablet form of thyroxine as obviously this is given intravenously?

[Nacoya in reply to Lisalee123456]

It will certainly avoid the digestion system so will test if that may be the cause....but it could be other reasons too. One more piece of information!

Would appreciate it if you would share the outcome.

[Lisalee123456 in reply to Nacoya]

Of course I go Thursday

[helvella Administrator Thyroid UK in reply to Lisalee123456]

Sounds wrong!

I think the levothyroxine will be given as tablets.

But you will have an iv device to take multiple blood samples at intervals.

[Lisalee123456 in reply to helvella]

Well that’s what I thought but I don’t take 1000mg of thyroxine that’s like 4 days worth be an experience at lease will keep you all posted!

[helvella Administrator Thyroid UK in reply to Lisalee123456]

Quite. But if you are only absorbing a small amount, say 10% or 100 micrograms, then that is a reasonable amount.

If you absorbed like most of us, then giving you 100 would be fine. But they think you do not. And if they give you 100, and you only absorb 10%, that would be a truly tiny dose of 10 micrograms being absorbed. Next to nothing. And too small to provide a clear answer.

So they give you a much, much larger dose and see if it has a similar effect that 100 would in most of the rest of us!

(10% is just being used to explain. I have no idea how much they actually think you are absorbing.)

When they do research on tablets, they very often give a 600 dose to ordinary healthy volunteers and don't see major issues. So a dose of 1000, while a big number, isn't that high.

[Lisalee123456 in reply to helvella]

Ah ok I see that makes sense- thankyou we’re see how it goes Thursday! X

[birkie]

Hi

I have no thyroid and are struggling with thyroid medication ,2 endocrinologists I saw said I was probably not absorbing the medication due to the fact it gives me gastric issues [ bad diarrhoea] but they only came to that conclusion through my bloods T4, T3, TSH] they have never suggested any specific test for absorption.

Although when I was hyper graves I also had fast runny stools ,and I had a bile absorption test🤷‍♀️ but I don't think that would determined absorption of medication, Although I'd love to know if there is actually any test that could determined if we are absorbing the medication well or not👍

[arTistapple in reply to birkie]

It would maybe give you some power to your elbow to get NDT on the NHS though.