I had a thyroidectomy about four years ago after my NHS endocrinologist informed me that he wasn't able to sort out my overactive thyroid. Long story short, things certainly did not improve after the operation and I felt much worse. After about 12 months my consultant maintained he was happy with my TSH, ignored the fact that I felt awful and promptly said 'my job is done'. Eventually I decided to pay to see a private consultant and at his suggestion I undertook a T3 trial. Things gradually improved, I felt a lot better and I was able to walk short distances. Eventually my GP was persuaded to prescribe T3 on the NHS and I breathed a sigh of relief. I had my first GP initiated Thyroid test on 16 November 2022 and was relieved to see the GP had stated my results were normal and no further action was needed.
This morning I have received a message from the Pharmacist at my GP Surgery requesting that I have another thyroid test as he is suggesting that my TSH is too low. I am due to have another blood test on Monday 9 January 2023 and now I fear he (or my GP) will try to reduce my medication and I will be back to square one. What would your take on this be, how would you respond if either suggest a reduction and can they refuse to give me the medication that I need to make my life bearable?
My medication is a follows :
Thyroxine (T4) 75mcg daily
Liothyronine (T3) 10mcg daily
Many thanks for any suggestions.
Written by
fredjones
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I’d share the history you have written here in letter form and attach the NICE guidelines about wellness and make it clear you are happy to take any associated risk of suppressed TSH as you no longer have a thyroid to stimulate and quality of life is a value judgement you are willing to make. And send that to your GP, the pharmacist and the practice manager.
Why would you meddle with the treatment of a person feeling well. Surely they have better things to do.
Back up plan £30 zoom appointment with roseway labs and go private again.
Wishing you all the best, this stuff is so stressful 🌱🦋🌱
google roseway labs, you book an online appointment with their prescriber, send them your medical details and recent blood test results (so plan ahead it takes time to put this together). Someone else recommended, I’ve booked an appointment in Feb to discuss options, I may cancel if current dose is optimal at next test in 4 weeks.
sorry I don’t know enough yet, my T4 is NHS, if I use this it’ll be to trial private T3, if I need it, if it works, my plan would be to then get an NHS referral (which I’m also pursuing in parallel) but GP surgery is in crisis and won’t entertain non urgent anything’s at present. Hence the private appointment. It might be too soon, I’ll give it a few weeks and decide. 🌱🦋🌱
It's only £30 for an appointment at Roseway? Thats worth a consideration for many tbh. I know we cant talk about prescribers here, but if my private Endo ever retires it's somewhere I'd think seriously about.
Thank you so much for your reply and your advice. I obtained my T3 through Roseway Labs when I was a private patient and my consultant contacted them for me. I had no idea I could have a zoom appointment with them so thank you for that information. I am going to print off all these wonderful replies so that I have them on hand when I need them.
Thank you so much for your reply and your advice. I am copying all the responses I have received so that I can read them carefully and be on the ball when I am questioned on my TSH. Wish me luck!
I find your experience hard to swallow. A pharmacist having the nerve to diagnose you without any knowledge of presentation or history, and to effectively try to countermand the doctor's decision. If you feel well and the doctor agrees, there's no reason for change. The key part of diagnosis and treament is to get the patient well, not to scrabble about cherrypickinfg numbers that don't agree with prejudices. TSH down to 0.03 is perfectly OK on treatment, but not in the untreated patient. This is because loss of thyroid accompanies a loss of some of the T3 you had when well. To get that thyroidal T3 back as well as the T4 converted to T3 by the body, you have to take more hormone, which suppresses your TSH.
Thank you for your very informative reply. I am ready to parrot your words at the pharmacist starting ‘TSH down to 0.03 is perfectly OK on treatment, but not in the untreated patient…’ etc. I have a gut feeling it’s the pharmacist who is responsible and probably not the GP but I’ll find out soon enough!
I don't know if you know this but diogenes is, in real life, one of Thyroid UK's medical advisors and has been involved with research into the thyroid for many years :
I had no idea who Diogenes was but realised he was very knowledgeable and knew his stuff. Finding out he has been involved in research and thyroid testing etc doesn’t surprise me.
You may find these two papers useful re. low TSH :
This one shows no decrease in bone loss for most patients when TSH is kept deliberately supressed long term to prevent recurrence of thyroid cancer. healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer
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This one (very large , long term Levo study ) shows patients with "low, but not supressed" TSH 0.04 -0.4 had no increase in risks over patients with TSH 0.4 -4 ( in-range)
academic.oup.com/jcem/artic... Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy
Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, Graham P. Leese
The Journal of Clinical Endocrinology & Metabolism, Volume 95, Issue 1, 1 January 2010,
..... However risks did increase quite sharply once TSH went below 0.04 , (so your current 0.03 is a little bit of a problem here) , but even then , the risks were mostly less than the risks of TSH over 4 .. and you don't hear many Doctors panicking about the risks to patients of TSH 7/8/9 ,, they don't seem to think it's any problem at all ~ since the NHS don't even want to treat till TSH gets up to 10 .
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Also (in case you want any further reading on the subject of low TSH / Risk vs Quality of Life) ... see my reply to this post ( 3 rd reply down) for a list of older posts containing useful discussions/ research. healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low
If they try to fiddle with your dose , put this under their nose and insist on an Endo being consulted first . they are obliged to comply ~ unfortunately, they are not obliged to consult the same endo who put you on it. ie . they may consult one who doesn't agree with the use of T3 ,, so try to make sure they contact to the one who prescribed it for you on the NHS.
"The prescribing of liothyronine is only supported if initiated by, or considered appropriate following a review by, an NHS consultant endocrinologist. The withdrawal or adjustment of liothyronine treatment should also only be undertaken by, or with the oversight of, an NHS consultant endocrinologist. Where General Practitioners (GPs) are involved in such treatment changes this should be with NHS consultant endocrinologist support. This advice applies to both liothyronine monotherapy and combination therapy with levothyroxine. "
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Note~ the above guidelines (RMOC) are what most (?all) NHS regions (CCG's. now called something else ) use to back up their regional prescribing policies for T3...... but do check what is going on in your own region as some areas currently have slightly different prescribing rules/ limitations for T3.
read the "T3 Prescribing Report" referred to in this post, it has further links which may help you.
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
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 themand their families and carers or guardian. "
It’s almost inevitable on any dose of T3 TSH will be low
Thank you for responding with such clarity. I shall definitely dig my heels in and absolutely refuse to reduce my dose if they want to do this. I have felt so unwell in the past and for so long, I am not going through that again!
This obsession with TSH is causing misery for so many people and until 'they" get their heads round the fact that TSH is not a reliable marker, this nonsense will continue.
The TSH test was initially devised to diagnose hypothyroidism.....nothing else. It has been tweaked for use as a quick/ lazy! method of diagnosing and medicating.
Further, T3 and it's function is also misunderstood.
Medics are supposed to include clinical evaluation in their diagnosis but instead they seem to rely on nothing more than numbers on a screen......they hardly look at the patient... or even less likely, ask how they feel!
"Normal" is not a diagnosis it just means the result sits somewhere in the ref range....to be euthyroid each patient's result will sit on a specific point within the range unique to them
With machines it is easy to calibrate an accurate result to correlate the readings of (an instrument) with those of a standard in order to check the instrument's accuracy.....we are individuals,not machines, but medics seem to forget this!
You will not be overmedicated so long as your FT3 result falls within the ref range.... at 6.1 pmol/L [3.1 - 6.8] your level is close to the top of the range but not over.
Some of us need our FT3 to be at that level, and how we feel is an important deciding factor. Your symptoms after reducing your dose don't seem to have been considered....they suggest you do need 10mcg T3.
However, if T3 is refused then your levo dose is still low at 75mcg and a solution may lie there.
Are you aware of your T4 to T3 conversion status? If conversion is good then raising your levo from 75mcg may provide enough T3 from T4 to T3 conversion.
Also. have you optimised vit D, vit B12, folate and ferritin to support conversion/ thyroid function.
Unfortunately the responsibility for prescribing T3 lies with the endo....and his/ her opinion.
However, changing a dose is also the responsibility of an endo.....not a pharmacist!
I would refuse to accept a reduction until you have had a consultation with an endo who hopefully understands that TSH is a pituitary, not a thyroid, hormone. It reflects the overall level of hormone ( T4 + T3) so does not show which hormone is too high or low.....and that is vital info.
The following might help...
Time for a reassessment of the treatment of hypothyroidism
Thank for your very full and knowledgeable response. I need to be absolutely on the ball with my answers when I see the Pharmacist who I believe has started this hare running. I can’t say that I know what my T4 to T3 conversion status is but I am not keen to raise my T4 as I remember how unwell I felt when I followed this regime before. Fortunately my B12, Vitamin D3, folate and ferritin were fine when last tested last August.
I remember writing a lengthy reply to you some 2 years ago now when you first joined the forum :
Glad to read you followed through and have felt improved taking a T3/T4 combo :
" My take is " that this pharmacist is playing ' God ' and likely following some instruction to reduce costs : but will ' package ' the issue as one of your TSH result being below range.
It is absolutely ridiculous.
If the conversation revolves around the fact that your TSH is low suppressed - suggest the pharmacist reads up about Graves patients and TR ab antibodies circulating in the blood, for years, probably for life, as no one really knows - and why a TSH in Graves patients is a totally unreliable measure of anything post a thyroidectomy or RAI thyroid ablation and why you must be dosed and monitored on your Free T3 and Free T4 readings.
You must be dosed on Free T3 and Free T4 blood tests - to be in range - which they are -you are improved and more well than since having had the thyroidectomy and the doctor has not suggested any action to be taken.
I'm sorry if this is probably stressing you out - please talk to the doctor for assurance.
You have T3 prescribed on the NHS and your surgery have agreed to cover the costs - it has nothing to do with the pharmacist who I presume knows nothing about your medical history though should if they are now presumed to know what they are doing.
Thank you Pennyannie for another great and knowledgeable reply. I have calmed done a little since I got the message from the Pharmacist this morning but I have to admit I certainly had palpitations when I received it. If I can’t get it resolved I shall definitely make an appointment to see a GP as you suggest.
I'm sure the pharmacists are acting with the best intentions. Unfortunately, my GP surgerey has adopted the same methods. Pharmacists are using their knowledge of medicines and contact the GP when something looks unusual and then the GP panics because the issue becomes 'visible' and they want to 'play safe'. The whole process is an awful waste of resources. GPs who know their patients are replaced by a pharmacist plus multiple locums, costing the NHS a fortune and distressing patients.
The responsibility lies with the GP. See what they say and be prepared to complain if they cause trouble. It may work out OK so play it by ear before submitting a complaint.
Just to play Devils Advocate here, in my case the pharmacist correctly identified I'd been prescribed the wrong dose and form of a new medication. I was diagnosed last year with Vestibular Migraine/Migraine Variant Balance Disorder (its got several names). I've been really unlucky with migraine preventatives. I've tried 6 different ones and either had to come off them due to lack of effectiveness or horrible side effects.
I'm getting pretty demoralised and depressed about my inability to find something to control my symptoms. I'm a member of a migraine, dizziness/balance disorder forum and its been truly eye opening, much like this forum its been a fount of knowledge and experience. A lot of people have had success with an antidepressant called Venlafaxine, in a low dose.
I had a phone consult Tuesday, my GP had to check with Neurology to make sure it was ok, they got the go ahead straight away (think my Neurologist is probably sick of me). Now I stated the dose I wanted 37.5mg an also that I wanted the extended release version. For two reasons, I'm very sensitive to meds and wanted to start off very slowly and titrate upwards. Extened release is gentler and more consistent than getting it all in one go.
Howeve when I went to collect the meds the GP had prescribed 75mg increasing to 150mg. Too high for migraine and much too high for me. He had also not prescribed the extended release version .
The pharmacist was lovely, queried the dose, queried the non extended release, agreed with me it was too high a starting dose, especially for delicate souls like me and emailed the surgery asking them to reissue the prescription correctly. Which they eventually did.
I have a high opinion of pharmacists, especially my local one. The issue is that GP surgeries are recruiting pharmacists to do the prescribing, in an effort to save GP time. I believe the most efficient approach is to have a regular GP whp knows their patient. The pharmacist at my GP surgery queried my prescription with a GP I'd never seen before and she panicked.
There was a change a year or two ago to allow pharmacists to prescribe, this makes sense for regular easy to identity conditions. However, this common sense approach is now being circumvented by doctors ducking their responsibility. This is what I don't like. It's an abuse of the patients and the pharmacists.
Thank you for your reply and suggestion that I see my GP and talk it through with him. I am going to have another blood test on Monday and when these results come through I shall then be in a position to compare the two sets and hopefully prove that I on the correct dosage.
Your blood test results indicate you are on a high dose. Going by this alone you should reduce your dose. However, some people need these higher doses. Hence I would focus on your signs, symptoms and how they affect your life. If you draw attention to the blood test results you are likely to have your dose reduced.
what I did to bring my TSH just within range was to lower my levothyroxine dose. I just reduced from 75mcg a day which I split into 2 doses. To 68mcg a day. You could even drop your dose for a few days prior to your blood draw this may well alter your TSH and bring it back into range. Splitting your doses also will help reduce spikes of thyroxine in your blood which causes your TSH to alert there’s too much in your system My bloods are usually just below half way mark without ingesting meds that day my latest TSH was 0.89(0.35-5.50) more importantly I feel very well, energised and symptom free
I’ve never altered my T3 dose of 5mcg twice a day 8hrs apart. Just alter/reduce your levo slightly. I informed my private only and also my NHS endocrinologists that I did this. They were both really pleased that I’d done that and said they’d learnt something new.
Technically if you do not agree to any changes based on the fact that they cannot prove the current doses are causing you harm, they can't change the prescription without your consent. Few people realize this to be the case.
Just tell whoever it is who is overstepping their boundary that you feel very well on the current doses and will not agree to any changes. It's your right as a patient.
can not believe a pharmacist can mess with dosages…. It’s happening with my daughter for another medication. A fantastic list of responses which I have copied and pasted to a notepad in case I can’t find this again with all the links (didn’t think it would work as I usually screenshot the parts I want) what a fight this whole thing is anyway and now a pharmacist can jump in is beyond me. Good luck with your outcome and everyone take xx
Many Pharmacists cannot make the exams to become a doctor and have a bee in their bonnet about it. The UK NHS has given them extra powers that they shouldn't have but are loving the power it gives them. Sad. Apart from the horrible meat and lack of a good stick of celery I am glad to be living in France.
What an appalling slight on pharmacists!! None that I know began studying at med school with the aim of being a doctor and dropped out!! The knowledge they have varies considerably from that of someone like a GP, who is not always best placed to medicate in the best interests of the patient, as they often lack a broad knowledge of medications, simply sticking to the ones they have always prescribed, or which come up first on their screen. They often have no real concept of drug interaction, either, which can be disconcerting. Many people are on medications no longer suitable for them, which interact with others they are on, and need tests to confirm their current status. The practice pharmacist will check recent test results, if any, and trawl through medical histories and advise of tests to be done or medication reviews to be made. They can, and do, work alongside a GP, if such an animal actually exists. I have had extremely productive discussions with our practice pharmacist, and, of course, the final decision, as they say, rests with us. For me, the pharmacist has been a help, not a hindrance, and, in the absence of available GP appointments of any sort, the only knowledgeable point of contact for medication queries. Even the pharmacist in our local stores are often more diligent than the GP about the medications they are dispensing, not doing so until they have confirmed with the intended recipient that the purpose and use of those meds is both correct and fully understood. They should be given full credit for what they are able to do, and I have to say that I have not yet met one who was too big for their boots, as you suggest. They are, after all, obliged to continue with their studies throughout their careers, just as GPs are, and should therefore be up-to-date with their knowledge as a result. I, for one, am more than happy to avail myself of their expertise, just as I am to attend appointments with a practice nurse or paramedic when advised to do so. Just about to send my latest BP readings to our practice pharmacist now!
My GP suddenly cut off my T3 too, citing expense. So I had to make a quick decision and change onto NDT, which has both T4 and T3 in it, and am much happier on it. Obviously I have to pay for it, but it's not too expensive and my hospital consultant has come to tolerate NDT on the basis that it's producing results. I had RAI so have had a lot of health challenges. Good luck!
Thanks very much! I'll take a look at the research. I find there is very little information on post RAI treatment - once you've had it, the expectation is that you should just get on with it and you'll be fine. I wish!
Your results look good and very close to my own. After I had my thyroid removed back in 2015 the Professor Surgeon gave me a copy of the letter that he sent to my GP. It started that I was to have a suppressed TSH. This is France so it's different. Make a detailed list of your treatment and of course, how you feel, put everything down on paper. Go to the zoom appointment is a great idea. Good Luck.
As someone who is on a combined medication of T4 &T3 I've been round the issue of suppressed TSH many times with GP. In the end my endocrinologist, nhs, wrote to my doctor stating that once on treatment the TSH is not of importance but what is important is the levels of thyroid hormones, tested by ft4 & Ft3. He said for me I need my levels to be near the top of the ranges and they should aim to keep them in range, though going mildly over is not of concern. That calmed my GPs down.The pharmacist who has interfered is clearly not aware of your history and clearly knows little about thyroid treatment, especially when on a combination. He actually has no right to interfere. I would complain to the Practise manager.
In your shoes, I would refer the GP back to your specialist advice received. It maybe also worth contacting your specialist too to let them know of what is going on.
I am so sorry you are going through this. There is an obsession with TSH and an over simplification of assessment of treatment that is convenient for doctors but does not ensure patients are optimally treated,....this approach leaves many patients under treated and feeling poorly. It's a disgrace .
Keep calm but don't allow them to do this to you. You have been through a terrible time following your op and the least they can do is to get you to a level of thyroid treatment that leaves you feeling well.
I had the same call - just explain you are transitioning and under a consultant - they will then go away. Be nice - the NHS are now asking GP's/pharmacists to check who is taking what and reduce if necessary to save money - so stick up for yourself and say that it would be detrimental for your health to alter what you are taking. I hope you continue to feel better - please explain you have no thyroid and the consultant is working with you to get things stable. Even tell him you are now able to walk some distances whereas before you couldn't. Hope his helps.
Thank you for your very amusing reply! It really made me laugh. I don’t think they would believe I was transitioning but nevertheless I will definitely remind them that my walking has improved since I have been on my present tablet regime. Hopefully they appreciate that I have no thyroid since I have been a patient at that surgery for the last 30 years. However the Pharmacist has only been there for about 18 months so he may not know if he hasn’t accessed my notes.
I couldn't understand why my reply made you laugh then I realised - I meant transitioning from T4 to T3 only ! Amazing what leaving a couple of vital words out can do !
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Suppressed tsh - latest blood tests. Do I accept the anticipated reduction of levothyroxine?
My latest thyroid bloods
got my blood results for the last 5 years
Endo wants me to reduce T3 and raise T4
Can anyone help me interpret my results so I can articulate myself better with my GP?
