has anyone had the absorption test and if so how did it go??
absorption test : has anyone had the absorption... - Thyroid UK
absorption test
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Lisalee123456
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I didn’t know there was such a thing,! Sorry I’m not answering your question but would be interested in more information 😊
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
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
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
Is there an issue if you've had thyroid cancer and taking t3? I thought having had cancer and thyroid removed it was important to keep tsh suppressed. Hopefully after your test the results might guide them to something that works
Surely if t4 isn't working then either t4/t3 combo or last resort t3 only.
I suppose you have endo and oncologist trying to work things out. Fingers crossed for you
Don't you mean conversion of T4 to T3?
Do you mean the DIO2 gene test ?
No it’s an absorption text to see why my body isn’t absorbing any thyroxine
Good Luck. Hope the test gets you some answers. Think everyone will be very interested to find out what the results are from the test, Birkie especially.
helvellaAdministrator
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
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.
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😢
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.
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😄😄😄
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
WOW.....no wonder They don't offer us this option 😲
I was actually asked in a pharmacy, (WELL Pharmacy) when a young, probably student , sourced me liquid levo which no one else could get at the time, ( 6 bottles when prescription was for 2) and asked, quite the thing, if it was the ampoules I wanted ordered. He would have ordered them even though not on my prescription. To be fair it was via a telephone enquiry on a Sunday, and he had not had sight of the prescription. If you get a young pharmacy student they are totally up for ordering in extra bottles of liquid to have in stock for you. They must obviously be being taught at university or college that it is good customer service to order in extra for a customer as a stock item , so that at the next prescription, they have it and can order more again when they give you the stock item. This has happened in another pharmacy also, in that a young person told me she would order in extra bottles , without sight of the prescription, via a phone call. On that occasion, her superior returned them when they came in , and tried to force tablets on me , telling me to crush them up and drink in water. The superior did re- order liquid for me when I refused the tablets., and presented the prescription. He was horrified that a member of staff had intended ordering extra and taking them into stock, as it is too expensive. He was also horrified that liquid had been ordered via a phone call, without the prescription being on the premises. Students see this as okay and must be being taught this is okay. Meanwhile , back in the real world, it is not okay with their superiors!
So levothyroxine ampoules do appear on the pharmacy systems.
I really wanted the liquid levothyroxine to work for me but it was actually the worst along with the teva tables 🤢🤮 obviously it's the fillers that eeffects my gut/stomach , I've tried every form of t4, t3 synthetic thyroid hormone and it's never worked 😔
Good Luck with the Armour medication ,Birkie. We are all keeping our fingers crossed for you.
The NHS dm+d database does have entries for 25, 50 and 100 microgram Tirosint capsules. But they are identified as imports and have no pricing information.
dmd-browser.nhsbsa.nhs.uk/a...
And priced at £95.81 for 50 capsules, they really don't get prescribed often!
openprescribing.net/dmd/amp...
Ah, very interesting. If Tirosint capsules were 50mcg and someone needed 50 mcg daily, if this £95.81 is for 50 mcg strength, it would be a 50 day supply. Forum posts 3 years ago cited Roseway Labs as supplying Tirosint 50 mcg , 50 gel capsules on a private prescription for £65 at that time. Without a private prescription, Tirosint will be unobtainable due to it being an unlicensed import, which the NHS will not consider prescribing. I did ask the NHS for Tirosint near the start of my journey, and eventually was given liquid. The G.P. pharmacist said Tirosint was very expensive. For Levo T4, Tirosint is way cheaper than liquid levothyroxine, on a private prescription. A bottle of 50 mcg liquid levo is around £87-91 ish, but lasts ONLY 20 DAYS. If Tirosint dose is 50 mcg and it cost £95.81, this would be a 50 DAY prescription. Considerably cheaper. The advantage of the bottles of liquid is a tailored dose , easily measured. BUT, if a 50 mcg dose turns out to be optimal???, I would have a 50 day supply for a similar cost to that of a 20 day liquid one.
At the moment , a private Endo has supplied a 100 day T3 private prescription to Roseway Labs on my behalf. He is suggesting my thyroid medication be 50mcg T4 and 15 mcg T3. In Scotland we seem to be having a harder time getting Pharmacists to give out liquid levo , and I don't see this changing. It is reassuring, therefore, to be aware that if I eventually end up on 50 mcg T4 and the NHS stop my liquid levo, that if my private endo is still willing to prescribe for me, Tirosint might be a realistic option with a private prescription.
Thank you, Helvella. We need to think about 10 steps ahead for every eventuality just to try and make sure we can access suitable hormone medication, now and in the future. Contingency plans!
Poor Birky. I just hope , by some miracle, she takes to Armour like a duck to water! Stranger things have happened. Fingers crossed for her.
IBSA make Tirosint in many different dosages. The intention being to enable individuals to take just one capsule a day. But the only ones mentioned in NHS-related sources are 25, 50 and 100. If a dose such as 75, 125, 150 or 175 is required, that would likely need two capsules and therefore double the cost.
birkie,
Oh poor you,
Levo is absorbed mainly through the small intestine especially jejunum and ileum, which is usually the area affected by GI issues such as IBS, celiac, etc.
Before medicating and even the early years of Levothyroxine I had leaky gut and years of alternating constipation/diarrhoea, but found glutamine and marshmallow to be really helpful. Also I used to make balls of slippery elm for snacking on. These all help reduce gut inflammation that can become self-driving if not managed.
Have you tried any of them?
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
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 🤷♀️
Maybe birkie would be interested in this?
😄 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 😡
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.
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 👍
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?”
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!!!
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.
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!!
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.
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?
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.
Of course I go Thursday
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.
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!
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.
Ah ok I see that makes sense- thankyou we’re see how it goes Thursday! X
Hope it goes well!
Do let us know. 
Bless you Thankyou am here at endrinocolgy- on the ward- have had a cannula fitted- took 1000mg of levothyroxine orally- 10x100 tablets- fasted since 9pm last night- first bloods taken before tablets now taken hourly for 4 hours- possible risk heart fast rate- let’s see how it goes xx
Although when I arrived I was offered a tea or coffee 😂 luckily I said erm no thanks!!
I do like a laugh!
So the bloods taken are gold tops I believe only for the tsh level- feeling ok so far- have the ward to myself think I have to wait about a week for results
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👍
It would maybe give you some power to your elbow to get NDT on the NHS though.
Are blood test for your liver normal? That's a hardworking organ for metabolising your meds. I also thought of Pharmacogenetic testing.
"Differences in genetic (inherited) makeup among individuals affect what the body does to a drug and what the drug does to the body. The study of genetic differences in the response to drugs is called pharmacogenetics. In some cases, the level of an enzyme that metabolizes medications can be measured before starting the therapy. This should be considered before prescribing.
Because of their genetic makeup, some people process (metabolize) drugs slowly. As a result, a drug may accumulate in the body, causing toxicity. Other people metabolize drugs so quickly that after they take a usual dose, drug levels in the blood never become high enough for the drug to be effective.
In about half of the people in the United States, N-acetyltransferase, a liver enzyme that metabolizes certain drugs, works slowly. Such people are called slow acetylators...." Report link follows.
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