Pharmacist demanding blood test: I am taking... - Thyroid UK

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Pharmacist demanding blood test

Chriskisby profile image
75 Replies

I am taking 150mcg of Mercury Pharma levothryroxine and feel comparatively well. During Covid I never had a blood test, but now, suddenly ones are being demanded.

Following all the guidelines about not taking levo the night before a blood test, fasting and an early appointment my blood test has been highlighted by the Pharmacist to say I need another one.

my results are TSH level <0.01mlL (0.35-4.94) Below ref. Level.. Free T4 level 18.3pml (9.0-19.00). These, as usual, are the only things tested and I am being told I need another test immediately! I am very cross about this because, as I said I had no tests for nearly three years and feel well!

I know this is a common problem. Can anyone let me know the references from those who know about it that as my thyroid doesn’t work my levels don’t really matter! They refuse to do T3 in Primary Care (if you can call what we get that, these days!). I know there have been papers written proving that, but can’t remember where.

Thanks in advance! I desperately don’t want my levo reducing!!

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75 Replies

I didn't know pharmacists had any say about blood tests. Thought that is up to your GP?

Chriskisby profile image
Chriskisby in reply to

Especially as I had spken (via the receptionist, of course) with the GP who had agreed to wait three months before retesting!

in reply toChriskisby

Wow, so pharmacist can over rule a GP now. What the heck is going on. No wonder GPs are leaving the NHS.

Chriskisby profile image
Chriskisby in reply to

Absolutely!

Watamu profile image
Watamu in reply to

I had a similar experience several weeks ago. After already having had an appointment with a GP and agreed he would write to my endo to increase my Levo, I was chasing up having not heard anything for several weeks. The receptionist put me on hold to find out, she came back and announced that she had spoken to the pharmacist who said "your levels are 'normal' and don't need increase in Levo" - I blew my top and demanded to speak to a GP, no one was available then but was given an appointment for call back the following morning, I really didn't expect this to happen but on the dot at 9 am a GP rang me, GP was great, increased my Levo straight away no problem. I did apologise to the receptionist, after all she was just the messenger. But I do worry that now that pharmacists can prescribe that this may go to their heads and cause all sorts of problems for us thyroid people.

Jaydee1507 profile image
Jaydee1507Administrator

I know things weren't right at all thyroid treatment wise during the pandemic but things are returning to normal and an annual blood test is standard.

Are you taking any supplements, if so what?

It's likely you have low vitamin levels which can reduce TSH level.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. onedaytests.com/products/ul...

It is not mandatory for doctors to follow NICE guidelines. You can also accept responsibility for your low TSH & any possible adverse effects.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Chriskisby profile image
Chriskisby in reply toJaydee1507

Thanks for your reply. I spend a fortune every month on all the vitamins that are recommended here on this site, including all the ones you have suggested. I haven’t had them tested as I feel they must be working ok because I feel ok. My main problem is constipation, but I deal with that too with supplements. I think you are right that they give us no credit for making choices ourselves. I was a health visitor for most of my working life, so I have a pretty good idea of good diet and vitamin supplements, and all the problems we suffer with hypothyroid. I will admit, though, it never occurred to me that was what was wrong with me about 8 years ago when I was first diagnosed and my tsh was well over 100! I have learnt a lot since, one of the things being GP (and now pharmacists) have no idea about thrroid issues.

Jaydee1507 profile image
Jaydee1507Administrator in reply toChriskisby

Vitamin levels should be checked once a year as things do change. Vit D should be twice a year to allow for seasonal changes.

A good dose of folate fixed my constipation. I do take more than is in a B complex but I do also have MTHFR genes.

You can always over ride the pharmacist and ask to speak to/see GP. As you say though GPs aren't always any better. Take along some of the evidence posted here to bolster your case & good luck.

Chriskisby profile image
Chriskisby in reply toJaydee1507

Thanks. I am hoping to gather some more evidence from the kind people here and present it to them!

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH and Ft4 is useless

You need TSH, Ft4 and Ft3 tested together and vitamin D, folate, ferritin and B12 tested

For good conversion of Ft4 to Ft3 we need optimal vitamin levels

Test privately if you can’t get GP to do them

Chriskisby profile image
Chriskisby in reply toSlowDragon

You are right, of course it is totally useless, and that is why I am fighting having a second test in the same month! I do take all the vitamins you suggest, and more besides. I think I will look into getting a private blood test, as you suggest.

SlowDragon profile image
SlowDragonAdministrator in reply toChriskisby

Remember to stop taking any supplements that contain biotin 5-7 days before any blood tests - eg vitamin B complex

Biotin can falsely affect test results

Chriskisby profile image
Chriskisby in reply toSlowDragon

No wonder my bloods are not right! I didn’t know that! Thanks.

PurpleNails profile image
PurpleNailsAdministrator

your pharmacist is worried about the suppressed TSH. The fact your FT4 is in range probably hasn’t registered they are assuming you are over replaced.

You may have to argue your case & say you want to feel well & you accept the reported risk of low TSH - (which is originally based on research where high thyroid levels accompany the low TSH )

Chriskisby profile image
Chriskisby in reply toPurpleNails

Thanks. You are right. The F4 is in range. I am quite happy to accept the”risks” to have a decent quality of life!

Steni profile image
Steni in reply toPurpleNails

who in earth is a Pharmacist to be ‘worried’ about anything in this situation- these well meaning but ill informed people would do better to worry about something else . And why is he/she even reading results !!!

tattybogle profile image
tattybogle in reply toSteni

pharmacists are increasingly being employed by GP surgeries to take over some of the workload eg annual monitoring of medications etc , ( because we haven't got enough GP's anymore so they need to free up the ones they do have to see more patients). england.nhs.uk/gp/expanding...

When employed In this role at a surgery they do have access to patients blood results. (whereas the pharmacist at the chemist shop you collect the prescription from doesn't)

tattybogle profile image
tattybogle

This post has useful references:

the first shows there was no increased Bone fracture / Heart risk when TSH was more than 0.04 on Levo ,...( it did show increased risk when TSH below 0.04... however those risks were mostly still less than the risks for undertreated hypo.) This one doesn't have fT4 measurenents , so can't prove it's low TSH causing the risk, rather than high fT4/ fT3)

it has a link to a study showing long term supressed TSH on Levo did not reduce bone density.

it also has links to several useful discussions on the subject of low TSH/ Risk vs. quality of life.

healthunlocked.com/thyroidu.... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-as-long-as-ft4-and-ft3-are-in-range-.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This post has a reply i just added which looks at a recent study which did show a slightly low but not supressed TSH (0.1 - 0.5) with fT4 IN RANGE on levo WAS a slightly greater risk for Cardiovascular/Stroke mortality than TSH in range is ... but again , that risk was still lower than the risk for slightly undertreated hypo,

If TSH was below 0.1 the risk was a bit greater , but again not by much , and still less risk than for undertreated hypo.

healthunlocked.com/thyroidu... bianco-video? reply by tattybogle

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The key point about both these to get across to GP's in dose 'discussions' is that the risks associated with low TSH need to be looked at in context of the other risks that they don't seem half as bothered about ... and most importantly in relation to the clear risks of feeling so unwell on a lowered dose that you don't get off the sofa very much .. which is definitely a big risk for heart health and bone strength.

Chriskisby profile image
Chriskisby in reply totattybogle

Thanks, I will read and digest it, and pass it on, if they are interested, which I doubt! I want to get a portfolio together to show the research has moved on since they last looked!

Star13 profile image
Star13

I’m still trying to get over the fact that it was a pharmacist that has “ordered” you to do this “immediately! If it was me I’d ignore her/him or speak to the GP and ask if they want to waste their budget repeating the test! If he agrees you need to do it then say you will but you refuse to adjust your dose without any discussions first. That way this Pharmacist can’t just change your prescription. Good God! They are really getting too big for their boots!

greygoose profile image
greygoose in reply toStar13

They always have been, in my opinion! Well, here in France, anyway. They think they know more than the doctors and will contest the prescription the doctor has given you! The rows I've had! lol Can't go in any of the pharmacies in my town, anymore for fear or reprisals! lol

Chriskisby profile image
Chriskisby in reply togreygoose

I didn’t even know the GP employed/worked with a phamacist. It is certainly not the one I use at Boots because they were the only ones prepared to get Mercury Pharma for me, and I asked around quite a bit before I found them.

greygoose profile image
greygoose in reply toChriskisby

I think it's a new thing, isn't it? It wasn't like that when I lived in the UK.

Chriskisby profile image
Chriskisby in reply toStar13

As I said earlier I had already had the GP’s agreement to be retested in 3 months! Overridden by I don’t know who!

Star13 profile image
Star13 in reply toChriskisby

if the GP has said retest in 3 months I’d ignore the Pharmacist….personally. If they ask why you haven’t tested you can tell them. They are getting too big for their boots. Brought in by CCGs some time ago to cut back on GPS drug budgets. Now they are over riding their decisions which they don’t have the remit to do.

Chriskisby profile image
Chriskisby in reply toStar13

Great idea. I am putting together as much evidence as I can to stop them reducing my levo. I still have the text from the GP (receptionist) saying re-test in 3 months so I will add that to it. My TSH has always been low (after it was over 100 when first diagnosed) but I have to go through the rigmarole of accessing my records which is less easy when they are not recent ones to prove it.

Blearyeyed profile image
Blearyeyed in reply toChriskisby

Just checked the Pharmacist Legal guidelines.There are instances that a pharmacist can refuse to fill a prescription signed by a GP , but this is not one of them.

They can suggest that you are retested ( but cannot insist that you do so before giving repeat medication)and request more information from the GP whom signed the script if they feel they may be an issue , or it is a drug prescribed for the first which may contraindicate with other essential medications that you take , but if the GP has signed off on your repeat prescription it is actually their legal obligation to fill the script promptly, or give you the script back to be filled elsewhere if there is likely to be a delay.

If they are refusing a prescription you regularly use and not allowing you and your GP to have the ultimate decision in your treatment they are in contravention of their own governing guidelines.

The only change since COVID is that they gained more rights to give drugs without prescription in special circumstances or had the right to change the supplier if there was a shortage of a brand which would cause a delay in filling the script ( as of changes to prescribing law since 2018).

So , if your GP is happy and you have taken their advice on board and decided to retest they are legally obligated to fill your prescription they can't refuse and leave you without it , or they break their own laws of practice.

It would be worth getting your Vitamin B 12 , Ferritin / Iron and Folate tested , as deficiency or very low levels in these could affect how well your absorb medications and affect your blood tests. Get copies of the results as they will often state a test is normal when it is borderline or very low and possibly still affecting your symptoms and metabolism. If your B12 is deficient you will need a test for Pernicious Anaemia . Don't take B vitamins or Folate for a week prior to these tests as having non active B 12 in the bloodstream can give a false high result.

You can have a great diet and take supplements but still become B 12 or Folate deficient if you have difficulty metabolising these and this also causes deficiencies in Vitamin D and Iron as you don't have the nutrients used to help metabolise them. These deficiencies can also cause poor thyroid function , neurological and cardiac symptoms, fatigue and pain.

If you have been taking supplements for some time you need to tell the GP this if your results are low or deficient as otherwise they ask you to take supplements for three months before starting B12 injections , but that is a pointless delay if you had already been taking supplements and eating properly.

If you are deficient in B 12 you should get B12 injections , NICE guidelines state that you don't retest after these because the total B 12 test will be artificially high but they should continue injections . But , you may require an Active B 12 instead of the standard Serum B 12 test done if you are still having severe symptoms after injections begin.

You can't overdose on B 12 , but you do need to be careful about the amount of Vitamin D you take , so if that it high you may need to reduce the dose you take or take the higher 4000iu dose on alternative days rather than daily.

You can request to get B 12 and Folate tested every six months on the NHS even in normal range on the NHS via the GP , or every three months if you are borderline / low and trying oral supplements, but you can only get one Vitamin D test done legally each year in the UK , even if you tested deficient ( as they madly assume the supplements will just work ) . Even if your GP requested another test in less than twelve months the NHS lab would refuse to test the sample , and do , as I know from experience.

Hope this helps you get things sorted out.

Chriskisby profile image
Chriskisby in reply toBlearyeyed

Thanks. Very useful. It is added to my evidence portfolio!

tattybogle profile image
tattybogle in reply toBlearyeyed

I think you may be looking at the rules for pharmacists working in dispensaries where their role is filling prescription.

The pharmacists working in GP surgeries are reviewing the patients medication. and prescriptions .... not dispensing them .

NHS are increasingly employing CLNICAL pharmacists as part of their team in GP surgeries :

england.nhs.uk/gp/expanding...

Difference between clinical pharmacists and pharmacists :

idstewardship.com/id-pharmd....

Those pharmacists employed by the surgery as part of the team will have access to patient records and some of them can prescribe / adjust patient medication.

Cup-cake7 profile image
Cup-cake7 in reply toStar13

....good luck. I had fun & games with the Lab who wouldn't process my T3 test that the Endo requested! The responses was 'we are clinirucians' !! It isn't necessary!'

Who are these people to override the condsultant

Jumbelina profile image
Jumbelina

It sounds as though the GP has outsourced the testing to the pharmacist, who is just looking at T4 (at the top of the range) and TSH (under range) and acting accordingly. Maybe you might contact your GP, explain that you were a health visitor, are currently feeling well and have some understanding of thyroid issues . Say that you do not wish your current medication to be disturbed because it is finally working.

Chriskisby profile image
Chriskisby in reply toJumbelina

I think the GP’s in our area have outsourced everything! If we have a problem we are told to go to A&E. It is, literally, impossible to speak to a GP.

Rapunzel profile image
Rapunzel

Right then. Red rag to a bull, this, and recently had something similar from my clueless tool of a GP.

The pharmacist or your GP cannot compel you to do anything. They can demand and order all they want. Our health is supposed to be a consultative process and I am grateful every day that we don't reside in a police/GP /effing pharmacist state.

How about this? My recent blood test demand added, 'Failure to comply will affect the supply of your medication'. I'd just had a blood test. I'd just had a wee test, 'normal'. Allegedly because my birthday is in April I have fallen foul of the ' new protocol' ensuring that I have a blood/wee/blood pressure check once a year, the month dictated by my birthday month. Obviously that brain-dead idiot practice 'manager' couldn't be bothered to look at my recent records, to ascertain that all the required tests had recently been done. So more of our NHS money is wasted.

I queried this nonsense when I went to pick up my wee canister/vacutainer; most especially the threat to withdraw the two medicines I get from the practice. I told them that if they wanted to stop my blood pressure meds I may have a stroke, which I would then lay firmly at their door. Similarly, I may decide to top myself if my ADs are withdrawn. Is that what you want? Because that might happen.

I then got chapter and verse about how many patients ignored their 'requests' and 'it's not a threat'. Well, your language skills are evidently less than optimal, then.

In your mocassins, I would suggest a telephone consult with your GP, who, trust me, has greater agency than this pharmacist.

Good luck 😜

Chriskisby profile image
Chriskisby in reply toRapunzel

I have just got my next prescription, so I am going to leave it a month and see if anything is “threatened”. I must admit reducing my levo is the very last thing I want, or need! Thanks for your support. I will add it to my evidence! Only problem with my GP practice is I am more likely to get through to God first! It is impossible to get a telephone or any other kind of appt, except a nurse to take bloods! We even have to send our own BP readings in to them as they don’t do them anymore. Utter despair!

Rapunzel profile image
Rapunzel in reply toChriskisby

Nolite te Bastardes Carborundorum as Catullus never said...

tattybogle profile image
tattybogle in reply toChriskisby

"Ring Ring" ..

"phonecall for Chriskisby ..."

"God here .... you don't have to reduce your levo if you feel well, and I have more authority than the GP , or the pharmacist"

Chriskisby profile image
Chriskisby in reply totattybogle

Well said, God! Thank you!

Shellian profile image
Shellian in reply toChriskisby

It sounds like my GP surgery too. In recent years it has been taken over and is in a big group called Modality. There is no personal touch anymore. They have a pharmacist who looks at all the prescriptions when they are up for review and looks at the results of the blood tests and they have a machine in the waiting room where you do your own blood pressure. If they try and question my thyroid results ( my TSH is always undectable, although I hsve had my thyroid removed so maybe that's why? )I always refer them to my endocrinologist and usually they then complete my prescription. It is difficult to get a doctors appointment.

Chriskisby profile image
Chriskisby in reply toShellian

I have never been referred to an endo. The GP’s here cover a massive area and there is no such thing as a family/personal doctor. Appointments are only available, with great difficulty, with Practice nurses who simply take blood. They have a piece on their website actually telling people to attend the local A&E or minor injuries unit. They also list missed appointments each month! I think their figures are pure fantasy to make them look/feel better. I agree about the tsh too. My thyroid doesn’t work (at least I still do have one, for what use it is) so what is the point in stimulating it? I am thoroughly cheesed off!

Polo22 profile image
Polo22 in reply toChriskisby

I actually asked for a referral to Endo over a year ago, response was there's no point , it will get refused and bounced back because your on meds and have regular monitoring. I tried to be tactful and said yeah but it is a specialist area of medicine so would appreciate a specialist's opinion, heard no more I assume he didn't refer

Chriskisby profile image
Chriskisby in reply toPolo22

Can’t even get a GP appt so no hope of referral toanyone else. I am not asking for that. I just don’t want to be referred again for another blood test yet!

Gerri030306 profile image
Gerri030306

I had this with the pharmacist at my GP, I phoned him up and spoke to him, I was fuming!! I explained what is said on this site, that the TSH does not indicate how the Thyroid is functioning etc. I agree you need ferritin, vit D etc and T3 testing to get a full picture. My GP did a full set of blood tests as an annual review, so you could ask if that is possible. Or ask the GP to be referred to an Endo or get the bloods tests done privately?

I would contact the pharmacist and ask for some time to get these tests done and ask why he is challenging blood tests when he is not a GP or an Endo.

Looking at your T4 it could be that you are not converting to T3 but you won’t know that without testing your T3 to see where it is in range.

Chriskisby profile image
Chriskisby in reply toGerri030306

I did wonder about the conversion to T3, but I feel comparatively well. I always say comparatively because I do tire and am well ready for bed by 9-9.30 every night. I need 11 hours in bed, but when I first started with hypo I really thought I was dying! I had to plead with a fill in GP to do something and that’s when they discovered I has a tsh of more than 100! That was 8 years ago. I had no blood tests for over two and a half years during Covid and I coped very well. (I did feel a bit off for a week with the booster Moderna vax, and my husband got shingles afterwards too). I have been told it is not part of primary care to do T3 testing. They are not interested in conversion rates as they have no intention of giving anything but Levo. I will have to look into having a private test. Thanks for your suggestions, I will ring the pharmacist when they say, again, I need another test!

Delgor profile image
Delgor

Chriskisby

DON'T let them do it - it's your body and your life and neither pharmacists or gp's are experts on the subject of thyroid. Believe me, I was well, active and happy for years and years until the onslaught of the pharmacists at our surgery just over 3 years ago and now I'm severely chronically fatigued with more medical issues than I ever had before and who really cares (certainly not them). Have spent a fortunte on private tests to try and get myself good again, seen both hospital and private endo but all to no avail - they are all fixated by blood tests. Stay Firm - Have Belief in Yourself - Listen to the Lovely People on the Forum who Care more about you and DON'T change your meds!

Chriskisby profile image
Chriskisby in reply toDelgor

I am so sorry you have had this to put up with too! I tried for a week cutting back 25mcg to see how I felt. I felt wretched!! I will research having a private test done, though, having worked for the health service all my life I do resent it, and understand how others feel about the poor testing regime we have.

tattybogle profile image
tattybogle in reply toChriskisby

Not suggesting you do need to reduce at the moment , but if in future you do wish/ need to try a lower dose ... try a smaller reduction than 25mg eg 12.5mcg or less .. and wait for AT LEAST least 5/6 weeks before deciding how the new dose feels. the first few weeks often feel pretty undermedicated even if that dose will actually be perfectly ok once the body has adjusted itself .

25mcg adjustments are often bigger than is needed. 125mcg was a little bit too much for me .. but 100 left me a totally constipated zombie ..112.5mcg is about right but it did take several weeks to feel ok.. the first 5 weeks were not great at all. i now realise that in the past i have been far too quick to make my mind up about how a lower dose would feel .

Alternate daily dosing is a common way of fine tuning Levo dose by smaller increments than 25mcg tablets allow .

it can be done because Levo has a long half life (7 days) .. so the level evens out in the blood.eg.

eg. 112.5mcg can be done by either 100mag one day / 125mcg the next/ etc ... or cut a 25 in half to get 12.5mcg if you prefer to take exact same dose each day .

even finer adjustments can be made like this eg:

(1 day 125) + (6 days 100) = 725mcg /week = 103.5 mcg /day

(2 days 125) + (5 days 100) = 750 mcg / week = 107 mcg /day

(3 days 125) + (4 days 100) = 775 mcg/week = 110.7 mcg /day

(4 days 125) + (3 days 100) = 800 mcg/week = 114 mcg /day

(5 days 125) + (2 days 100) = 825 mcg/week = 117.8 mcg /day

(6 days 125) + (1 day 100) = 850 mcg/week = 121.4 mcg /day

Some people don't notice any difference how they feel between the days with larger / smaller doses , but some do.

best practice is really to space the higher /lower days out as evenly as possible so you don't have 2 days together on higher/lower dose .

Chriskisby profile image
Chriskisby in reply totattybogle

I will save your suggestion. Thanks.

Cornwaller profile image
Cornwaller

One solution which generally works is to not book the blood test. The pharmacist will likely forget about it, at least for a while, and you can continue with your prescription as normal. It is also good to build up a modest buffer stock of the medication so your less susceptible to any petty tinkering by those caring for you.

Chriskisby profile image
Chriskisby in reply toCornwaller

caring for us is stretching it too far! All they care about are their pensions and working part time! I am going to forget it for now, as I do have a few in reserve. Thanks.

Cornwaller profile image
Cornwaller in reply toChriskisby

Sorry, should have used speech marks for the caring bit - it was an attempt at humour!

Chriskisby profile image
Chriskisby in reply toCornwaller

We certainly need some humour dealing with the ‘caring’ profession (I think that word needs inverted commas too, perhaps!). Appreciate your comment.

bikebabe profile image
bikebabe

hiya - your t4 result seems in range. I’m writing to give confidence that my thyroxine was reduced over 5 years from 200mcg to 100mcg due to high t4 and low tsh (and menopause) and I now feel same as I did when on higher dose. I did complain mightily of hypo symptoms each time dose reduced and argued with GPs but slowly my body readjusted. Takes time. there are repercussions from having too high a dose (and too low). I now have a teeny bit of t3 (10mcg) via endocrinologist which seems to do the trick as I was a poor converter. If you have to reduce, take it very slow - drop 25mcg twice a week then every other day until results are within range. And do the vitamin stuff as advised by more expert forum members.

Chriskisby profile image
Chriskisby in reply tobikebabe

I am well past the menopause, thank goodness! I am only prescribed 125mcg but feel much better on 150mcg. As you say my T4 is in range, if high and I keep arguing that as my thyroid doesn’t work why stimulate it! I am going to organise a private blood test as my GP’s refuse to do anything other than TSH and T4. I do take all the recommended vits, spending a fortune every month on them! I am going to fight to not have my levo reduced.

tattybogle profile image
tattybogle in reply toChriskisby

The nice easy argument that our thyroids don't need stimulating anymore so it doesn't matter if we have 0 TSH just doesn't hold water~ unfortunately ~ it would be nice if it did.. but it doesn't.

When we use this argument with GP's it just confirms their opinion that we don't understand what we are talking about and they know best .

TSH has two roles in the HPT axis .. feedforward ,and feedback :

once on thyroid hormone replacement GP's are not using TSH to see how much it is stimulating your thyroid ~ (the feedforward role) ~ as that role is now redundant .

They are use it as an index/ indicator to show the level of thyroid hormone in your body ~ (the feedback role) ~ and that role is not redundant.

Even with no thyroid at all , the TSH level is still a reflection of the amount of thyroid hormone action ON THE HYPOTHALMUS and PITUITARY .

Hypothalamus makes TRH, which causes Pituitary to make TSH...This is the "HPT axis" (Hypothalmus /Pituitary/ Thyroid axis).

The tricky part to explain/prove to GP's is that once patients are taking thyroid hormone replacement their hypothalamus /pituitary's opinion that "you have a bit too much thyroid hormone" (and turning down TSH to 0.0) can sometimes be incorrect .

Unfortunately It is very hard to prove to a GP that your pituitary's "opinion" on your dose is wrong.

When you give T4 only (as a replacement for T4 and a bit of T3 direct from the thyroid) .. you don't restore the patients ratio's of T4:T3 /TSH to quite the same as their previous settings .. and as a result their TSH indicator doesn't read quite the same as before.

.... it still works , but the needle is moved~ ie. it says you are doing 75mph (over the speed limit) , when you are only doing 69mph ....same as if you change the size of the wheels on a car , the speedo will read a bit wrong .

On levo only .... patients end up with relatively higher fT4 /relatively lower fT3 / and relatively lower TSH, than they had when their own thyroid was making a variable amount of ready made T3 .

This part can be proved, there is evidence (but i can't do it right now, my brain won't let me )

The TSH level is shifted downward a bit on levo only due to the relatively higher level of T4 .

But some patients need quite a lot of T4 to get enough T3 from it for them to feel ok .. and that higher level of T4 lowers their TSH ... but they haven't got any more T3 than they had when they were healthy and their TSH was a bit higher.

They need the higher fT4 (and therefore the lower TSH) to get the same level of T3 .. in order to feel well.

Hopefully i can come back later / tomorrow with a brain and do a better job of providing some evidence for that argument :) or someone else will .... if i don't you'll have to DIY:

the evidence is somewhere in here~ list of papers by diogenes (JEM Midgley) helvella.blogspot.com/p/pap...

or here ~ ThyroidPatientsCanada (Tania S. Smith) thyroidpatients.ca/home/sit...

Litatamon profile image
Litatamon in reply totattybogle

What a helpful and informative post. Thank you tattybogle.

tattybogle profile image
tattybogle in reply totattybogle

The following papers can be used to show TSH level doesn't mean quite the same once on Levo ~ TSH is relatively lower / fT4 is relatively higher/ fT3 is relatively lower:

a previous reply from diogenes to someone else : "Your GP should realise that in T4 therapy a below-reference TSH doesn't often matter. Indeed this downloadable paper shows that in therapy TSH as low as yours (0.06) can still express the body as euthyroid. You could download it and show its basic conclusions." (diogenes is the author of some of the papers below [JEM Midgley], also advisor to ThyroidUK ,and the inventor of one of the methods used for fT4/fT3 tests)

ncbi.nlm.nih.gov/pmc/articl...

Published online 2017 Apr 1. doi: 10.1089/thy.2016.0426

Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine Monotherapy

Mitsuru Ito, Akira Miyauchi, Mako Hisakado, Waka Yoshioka, Akane Ide, Takumi Kudo, Eijun Nishihara, Minoru Kihara, Yasuhiro Ito, Kaoru Kobayashi, Akihiro Miya, Shuji Fukata, Mitsushige Nishikawa, Hirotoshi Nakamura, and Nobuyuki Amino

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

onlinelibrary.wiley.com/doi...

Homeostatic equilibria between free thyroid hormones and pituitary thyrotropin are modulated by various influences including age, body mass index and treatment

Rudolf Hoermann, John E.M. Midgley, Adrienne Giacobino, Walter A. Eckl, Hans Günther Wahl, Johannes W. Dietrich, Rolf Larisch

First published: 23 June 2014

This study proves that once on Levo, the TSH level is shifted lower , and the fT4 is shifted higher ~ relative to the same amount of fT3.

Therefore explaining why patients often need a lower than 'normal range' TSH to feel well on just levo. ( they need a higher fT4 to get the same amount of fT3 ~ and in order to get the same amount of fT3 they have a lower TSH)

fig. 2 ~ a graph showing the lower TSH / higher fT4 / same fT3 after levo ~ is accessible via the 'Supporting Information' dropdown at the end of the summary.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

frontiersin.org/articles/10...

Sec. Thyroid Endocrinology Volume 6 - 2015 | doi.org/10.3389/fendo.2015....

Homeostatic Control of the Thyroid–Pituitary Axis: Perspectives for Diagnosis and Treatment

Rudolf Hoermann,John E. M. Midgley, Rolf Larisch and imageJohannes W. Dietrich

This one supports the same concept of a relatively lower TSH on levo ~ and why some tissues are potentially not getting enough T3, despite normal TSH.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

frontiersin.org/articles/10...

Front. Endocrinol., 07 November 2016

Sec. Thyroid Endocrinology

Volume 7 - 2016 | doi.org/10.3389/fendo.2016....

This article is part of the Research Topic : Homeostasis and allostasis of thyroid function

Relational Stability in the Expression of Normality, Variation, and Control of Thyroid Function ( can't remember what this one shows ,lol)

Rudolf Hoermann1, John E. M. Midgley ,Rolf Larisch and Johannes W. Dietrich

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

These two can be used to show that on T4 mono therapy , a dose that is enough to satisfy the hypothalamus /pituitary , does not always provide enough T3 to all the other tissues... some other tissues can remain hypothyroid despite TSH being in range ..... just because the pituitary thinks that dose is 'enough' (TSH is in range, not supressed) ... the heart / lungs/ muscles etc may not have 'enough' . So some people need to take more T4 (to get enough T3 to those tissues) and they end up with a below range TSH.. (and in a constant argument with their GP).

jci.org/articles/view/118353 Replacement therapy for hypothyroidism with thyroxine alone does not ensure euthyroidism in all tissues, as studied in thyroidectomized rats.

H F Escobar-Morreale, M J Obregón, F Escobar del Rey, and G Morreale de Escobar

Published December 1, 1995 -

thelancet.com/journals/land... The Lancet New insights into the variable effectiveness of levothyroxine monotherapy for hypothyroidism

Elizabeth A McAninch Antonio C Bianco

links to both the above were taken from this :

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

BMC Endocrine Disorders volume 19, Article number: 37 (2019)

Chriskisby profile image
Chriskisby in reply totattybogle

wow! That’s very complicated! I need to read it first thing when my brain functions better! Thanks, though.

Wua13262348 profile image
Wua13262348 in reply totattybogle

Brilliant, and beautifully eloquently, explained, as always! Thanks for this. Just need my brain to take it in, as I think I'm going to be using this in the near future. You would have made a fabulous teacher!

bikebabe profile image
bikebabe

and with ref to primary care pharmacist, they are valuable part of extended GP multi professional team and have more knowledge on medication issues in some instances and usually have non medical prescriber status.

Auders profile image
Auders in reply tobikebabe

I do agree with you. Many are prescribing pharmacists too. I worked in a hospital pharmacy before doing my nurse training. Part of the job was checking for drug interactions. They are highly trained in their specialties. Part of their role is to check medications, doses and contraindications etc. I do feel they have an important role in our poor beleaguered NHS. I have seen 3 huge black bags of medication returned to the pharmacy for disposal from a patient. The cost was astronomical! People often just reorder everything on their prescription wether necessary or not. One of my Mum’s friend supplied lots of people with creams that were on her prescription but she didn’t use anymore. Please try to be kind to the pharmacist, they are try to save money I admit but in circumstances it can be a good thing. Love to everyone 🙏

Charlie-Farley profile image
Charlie-Farley in reply tobikebabe

On Point! - and hospitals- but they are being put to a role they are not trained for adequately. Bearing in mind, the doctors do not know how to read the blood tests. The most likely outcome will be, what little knowledge they have is diluted yet further and passed on to pharmacists.

Charlie-Farley profile image
Charlie-Farley

I thought about training as a clinical pharmacist - their training is so in-depth on medicines and interactions etc. AND it is way more in-depth than I ever realised, but they do not study medicine per se as the doctors.

In hospitals they oversee prescriptions and if they see something has been misprescribed, they are the ones that pick it up and stop the doctor making a critical error. This is why people who have been to hospital frequently come out with less medication then they went in with.

However, in this new role, they have no underpinning of medicine in the same way that the GP does. So once again, the goal posts are moved. The training is not adequate and yet another person we will have to butt heads with.

Bearing in mind a lot of the underlying scientific principles of many of the tests that are being used is not understood by doctors this new ‘initiative’ Will only make things worse.

This all comes down to lack of training and lack of consequential thinking at the very top level. I dare say if there is a significant spike in death rate, they might actually notice! But if it is merely a case of the lived age dropping, they will probably blame it on other factors.

helvella profile image
helvellaAdministrator in reply toCharlie-Farley

Much of the pushing of pharmacists in recent years seems to have been a way of dealing with overloaded GPs.

But the result will inevitably be overloaded pharmacists.

One major chain pharmacy literally always has a queue. I can't imagine trying to get a few minutes with an actual pharmacist (not an assistant of some sort or trainee).

However, my GP surgery has a pharmacist (no idea how long he has been there). And he was very understanding and helpful in getting my levothyroxine prescription changed to Aristo. (I had issues with Accord and put Yellow Card in. But until convinced they have investigated and resolved whatever is happening, I don't want that again.)

Ironically, I was at the same time able to inform him of the unavailability of another medicine - which he had just prescribed to two other patients without realising!

Charlie-Farley profile image
Charlie-Farley in reply tohelvella

I think they make an incredibly valuable contribution with their knowledge, and our meds management team headed up by the surgery pharmacist Does a great job and alleviates the need to speak to a doctor, which I always am pleased about.

However, they are being taken away from their knowledge base and probably given a crib sheet by an ignorant GP who also does not know how to read blood tests, Let alone evaluate symptoms!

This just gets more and more absurd and speaks to the fact that symptoms will be less and less considered as time goes on, it’s a retrograde step, and yes, they will be the next cohort to be overloaded.

houston8 profile image
houston8

Interesting about UK clin pharmacists. Here in the states we have pharmacists then clinical pharmacists who have done a residency & even a specialty . Ex Board certified pedi pharmacy. I work as a pharmacist ( rph which is registered pharmacist) in a hospital but cannot change anything without the provider ( “gp” or “ consultant” i think is what u guys call them) guving us permission. The only exception is when the pharmacy& therapeutics committee comprised mainly of doctors & sometimes Pharmacists have met& drawn up agreements. One example at the hospital i work at is ordering a creatinine level for patients on lovenox( an anticoagulant).

We call drs all the time though& make recommendations but that is a request. “ hi dr i noticed patient has zosyn 3.375 grams three times daily… based on pt’s weight/ clinical indications, the data shows 4.5 grams is more effective … may it be increased..”?

UrsaP profile image
UrsaP

Even when there is an issue with the blood tests they don’t request another that quickly, they usually wait 3 months. Lots of people have very low TSH levels, If your TSH is normally that low, and mine was for a long time, and you feel well, might it be a ‘normal’ level for you? I know when my TSH creeps up that is when I tend not to feel well. Aren’t the ‘normal test levels’ based on euthyroid people? When one has a thyroid dysfunction, and/or is on medication that level can’t really apply in the same way, can it? I don’t get where the pharmacists gets the authority from to insist on more tests, I could understand them advising you to ask the GP to repeat the tests, but they should continue to prescribe.

How do the pharmacists even know your results, surely they shouldn’t have access to your records, under data protection?

Mine get the prescription from my GP and supply. Because I am on T3 only, I have a once yearly hurdle of getting a form from the the pharmacist to the Gp to sign to say s/he is not issuing T3 for weight loss, which I then take back to the pharmacist who then can order my T3. So much for technology! I’m convinced it is just in place to frustrate and delay. A pain, but a small price to pay for the right medication.

tattybogle profile image
tattybogle in reply toUrsaP

These are clinical pharmacists employed AT THE GP surgery (~ not the pharmacist (in the high street etc who dispense the prescription ) ~ as such they have access to patient results /records in order to do annual medication reviews / adjust long term medications etc . They are employed for this purpose to take the pressure off GP's .. as there's not enough GP's

UrsaP profile image
UrsaP

Ah ok, but surely if they think tge trsts need to.be repeated quickly they should discuss with the dr, and the dr can explain why it is too soon to repeat? All the best.

Digger0 profile image
Digger0

Is this the pharmacist at the surgery? I know that my surgery employs one to check meds etc.

Chriskisby profile image
Chriskisby in reply toDigger0

I assume so. Never heard of them there until all this blew up.

Shelleyblue profile image
Shelleyblue

Sorry to hear you are having to deal with ridiculous requests from ignorant pharmacists. This is yet another ploy to prevent the patients getting the right care. :( Ask for your medical notes from your GP so you can prove you've never had a problem. Also get hold of and print off the guidelines for thyroid patient treatment. If the pharmacist decides to not give you your levothyroxine dose tell them they cannot do that legally unless you agree to it and that you don't agree to any changes in your dose and ask to be referred to an endocrinologist. :) This seems to be happening alot recently. :( Please do join a thyroid support group on Facebook like ITT. 👍

Chriskisby profile image
Chriskisby in reply toShelleyblue

Thanks, Shelleyblue. Great idea.

tallulah100 profile image
tallulah100

I don't think the pharmacist sees your blood test. My GPS often writes on prescription that I need to get blood test. But this is coming from gp through pharmacist, not decision of pharmacist. Don't know if that helps.

Chriskisby profile image
Chriskisby in reply totallulah100

The GP had agreed to delay the blood test for 3 months, so the Pharmacist has over ridden her. All done through the receptionist, of course, never done personally!

tattybogle profile image
tattybogle in reply totallulah100

tallulah clinical pharmacists employed by GP surgery (to monitor/ review patients medication) DO see blood results. (the pharmacist that dispenses the medication at the chemist shop, does not)

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