Not sure if I should have started a new post for this, as i already mentioned it before, but I had a visit to a trainee GP about back pain, who told me quite quickly it was muscular, without much investigation, despite it being in one spot on the right side since October 2023 and offered no help in easing it. She then looked at my most recent blood tests and said your tsh is low, we need to increase your levothyroxine! I looked at her abit surprised and said 'increase? '. She then said she needed to speak to another doctor. She returned and said 'OK we're going to have to reduce your levothyroxine because you're over medicated'. I explained that my t4 and t3 are in range and symptomatically, I'm not over medicated. She then preceded to tell me all about the pituitary gland sending signals etc etc and that the tsh is the most important indicator. I obviously disagreed as politely as possible, but regrettably, began to get upset because of her patronising approach. I tried to inform her of all the research and information that suggested otherwise and she said 'show me then'. Unfortunately, as I was taken by surprise, I hadn't armed myself with any documents to show this and as she said to me 'I'm a medical professional' and smirked at me like I was an idiot, I got really upset and started having a panic attack. I told her that this was pointless and left. Long story short, a later had a phone call from another GP who apologised for the other doctors approach, but agreed that I should make a 'small' reduction of 25mcg! At this point I had calmed down a little and explained that I knew the risks (which were questionable) and felt that a reduction would put me back in a very dark place and she left it with asking me to consider it. I understand that GPs are not fully trained in thyroid disorders, but an appointment with an endocrinologist at my local hospital in 2023, said the same thing and was very focused on the tsh and not symptoms. I am reaching out today to ask if anyone can send me as many medical papers that dispute this, so I can print them out and be armed with them. It seems that they just won't listen to someone who has lived with this condition for 7 years. Many thanks.
Suppressed tsh. Uninformed GP: Not sure if I... - Thyroid UK
Suppressed tsh. Uninformed GP
Wanted to reply as I find myself in a similar situation. GP calling on Monday after consulting endocrinologist re my suppressed TSH. I have a different argument from you as with Graves my TSH receptors are blocked making TSH redundant. I intend framing my response tomorrow citing sources. I am rushing at the moment - going out after storm -but will be focusing on the fact I feel well with no symptoms. Thyroid results are perfect with T4 :T3 ratio 4:1. Other indicators associated with thyroid - cholesterol, HBa1C, pulse, all perfect. If they reduce my Levo to try to bring TSH in range, my T3 will drop causing symptoms affecting my QoL. I can prove this as it has happened in the past. I will throw in the phenomenon of Hysteresis and the fact Thyroid Cancer patients are kept suppressed TSH with no ill effects. I will ask them to provide evidence and refuse to lower my dose and say I will accept responsibility etc etc. Wish you all the best in challenging them
I’m having a similar issue too where GP wrote to end saying they are withdrawn prescribing me T4 and T3 due to suppressed TSH and oesteopenia.
Endo wrote telling them not to prescribe T3 and I now have an urgent meeting with endo tomorrow.
Never slept all night with worry.
I self source my t3, so they tend to leave me alone on that. It's the levothyroxine they're being awkward with. Don't know about you, but it makes me reluctant to visit the doctors for any issue, completely unrelated. The trust and confidence in them just isn't there.
This is the problem with self sourcing in that you have no doctor to back you up.
You can try using the NICE guidelines that say its your responsibility & they should take your views into consideration.
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. “
Alternatively find an Endo to back you up.
I agree and even if you go with a non thyroid related issue you can bet that somehow they'll bring up low/ suppressed TSH levels and try and blame whatever you have on that. I have such a low opinion of doctors.
Agree totally! I've been called by surgery for MOT checkup. Not going as they'll do TSH/T4 bloods+as TSH been suppressed for years, some whippersnapper will start haranging Me so I ain't making an appointment! No trust where thyroid concerned! None whatsoever!
The only other thing they home in on is weight. Everything that ever ails ya is due to being a bit chubby.
All these checks, screenings etc are for their benefit, ie they get bonuses if so many people have them. You just cant shake the feeling that we are just there to generate cash for GP's and they just go through the motions like robots. No compassion , empathy or concern.
We come right back to the issue - they don't listen yet we know our bodies better than they do! Numbers don't give the full picture and their being trained by the pharmaceutical companies (oh yes, when I worked in mental health hospital they were falling over themselves to get me to agree to their paying for a slap up buffet whilst they gave their speel on their new meds) just means they don't hear you and me, just big pharma! We need to bat back their nonsense - or just don't play the game! I'm choosing not to play!!
Me too, 😆. I've quoted it before but the actor Michael J Fox who has battled Parkinsons for decades said it best " doctors should listen to their patients, they are the experts in their own conditions".
As you rightly say we are reduced to numbers on a screen, they ignore symptoms or how we feel. Other than providing medication it makes you wonder what is the point of them.
Re my thyroid issues, wish I could bypass the GP totally! I get my bloods done privately, send them to my Endo, have my appt with him and skip the GP process! Get my T3 from Roseway Labs. Via link from Endo and that’s me done for another six months!
Withdrawing T3 won’t help unless they’re ONLY focused on the TSH rather than on your osteopenia which might be caused by long term very high doses of Levo.
I’ve been on T4 for 3 years but left hypo for 18 years without Treatment as got misdiagnosed as anxiety disorder.
Added T3 6 months after T4 and got as high as 35 T3.
The GP then stopped all meds and I’ve been to see the endo who wants the numbers in range to write back to GP, as TSH is 0.05 T4 22 and T3 7.3 so I will stop meds in a reasonable amount of time to hopefully get numbers under range to get 10-20 T3 reinstated from a previous prescription of 30.
I often think is T4 keeping me unwell as I’ve not felt the best on most combinations but when I’ve tried to lower T4 to 75 with 20 T3 before I was in unimaginable pain.
As you’ve not stated ranges for those results (do you know them?) it’s impossible to say for sure but it is possible FT3 is over range and FT4 is just in range. If that’s the case reducing T3 dose is probably wise and should show an impact in a few days. Reducing Levo takes longer in my experience to result in any significant change in bloods with TSH glued to the same number regardless of what I do. Hope you and your Endo manage to get you on a better path soon.
It is odd, isn't it, that we as patients get told that we can only raise one question per consultation. (At least, that is widely reported by members and across other sites, news and social media, etc.)
Yet your trainee GP saw fit to raise another issue without saying that it is directly related to why you had your appointment in the first place.
The old one rule for us, another for them...?
Would you be able to consider another endo? Contact Thyroid UK info@thyroiduk.org or use the link below:
I know some members have disputed the TSH is everything issue claims. I've put my efforts into collecting other information but don't have much, if anything on this issue.
I hope someone is able to provide what you have asked for. There certainly are some papers worth taking/quoting.
good point ~ 'one issue per appt' ~ ill keep that one up my sleeve.
My endo knows nothing at all about thyroids and is quite happy to admit that. But as a medical professional, he clearly knows more than me. Last time we met, he agreed to not drop my dose. I had gone prepared, but he didn't even look at what I had with me, or take any notes. there is one GP at the surgery who listens, but getting an actual appointment, never mind with a specific GP, is impossible. Please put in a complaint about that doctor. No doubt you'll only get a mealy-mouthed apology, but it might perhaps make the doctor think before opening her mouth next time.
I would love to get an endo who specialises in the thyroid. Endocrinology is such a broad spectrum.
Here’s Tatty’s links to lots of papers regarding low TSH….
healthunlocked.com/thyroidu....
just a heads up Beads , that post only has the references for keeping TSH 'low in range' (ie 0.5 -2 ish )
for TSH that is below range (ie 0.04 -0.4 ) it's this one ( but they relate largely to levo use only , not to T3 use ) : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk
there are no references recommending fully supressed TSH ie. <0.01 (unless patient is having TSH deliberately supressed as part of thyroid cancer treatment)
the only arguments that can be used when TSH is supressed but fT4 / fT3 within range are here ( but again they are mostly related to levo use , but there are a few bits about T3 supressing TSH more than T3 does which might be useful). : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.
Thank you. I'm still trawling through the Internet to get as much info as possible. My brain is scrambled. I won't give up though. Thank you.
In some patients taking thyroxine, TSH can be suppressed whilst T4 and T3 are within the range. There is a publication from our late friend diogenes, that explains that the pituitary feedback in some thyroid patients is not working as it does in a patient without thyroid disease. When taking levothyroxine, the TSH gets therefore suppressed by a much greater degree and the relationship between TSH, T4 and T3 is significantly altered.
pubmed.ncbi.nlm.nih.gov/249...
TSH, FT4 and FT3 each have their individual, but also interlocking roles to play in defining the overall patterns of thyroidal expression, regulation and metabolic activity. Equilibria typical of the healthy state are not invariant, but profoundly altered, for example, by L-T4 treatment. Consequently, this suggests the revisitation of strategies for treatment optimization.
If you can lower your levothyroxine dose without any adverse effects on your well-being, that's great, as we should aim for the lowest dose that is effective. However, if you can only feel well on a dose that would give you a low TSH (and which would give you a good levels of T3 as well), then you may have to disagree with your GP about your treatment. And even if you were to reduce your dose significantly, it may not bring up your TSH, it will very likely just make you very unwell.
Thank you so much for your response. It seems such an antiquated idea that TSH is the most important thing. The trainee doctor was adamant about that and went so far as to say that t3 and t4 are irrelevant!!
I think that trainee doctor should do a few extra laps and get educated properly! Or better even, hand his licence back as there seems little hope of improvement.
I fear this his is a flavour of what the next generation of doctors will be like. In the future, you will probably get more joy out of the AI summary on Google when you enter your symptoms rather than listening to the ill-conceived opinions of a doctor clueless about how the thyroid works.
Refused the yearly blood test to try and avoid this sort of situation, had to agree this year for reasons not pertinent to this post. As a result I had my T4 reduced by an unknown GP, sent to a chemist and that was the full extent of a consultation. A letter was dispatched to my GP, who used to be my assigned doctor, stating my refusal to have my medication tampered with especailly without a consultation and as my results indicated an increase not a reduction, my prescription was not to be changed under any circumstances. I enclosed research from across the globe by experts with new recommendations about the use of TSH as a guide for thyroid medications (going from memory). I was promptly put back on my originasl dosage. I no longer bother going and arguing, they know I will take it further and made as much noise as I can. What a world we now live in. I hope you are successful, do not allow them to brow beat you, they are in the wrong not you. God bless.
I'd love to refuse and tell them where they can shove their TSH but I'm obviously concerned they'll just refuse to issue my Levo. Which is their priviledge to do so. It wouldn't be so bad if they at least gave us a full thyroid panel at review, rather than just a TSH test.
I am not sure what the law is but I have a vague memory that by law they must have a good reason for refusing you treatment. Fear has become the norm among us and often because we are so vulnerable and too tired to argue our case, they get away with it. I know I was like some zombie at first but got my gander up when they started to speak to me like I had a few screws loose. Can you maybe take somebody along who could bolster your confidence, sorry if you have tried this.
Maybe some body on here could clarify the legal side of things, I am 83 and am going on what used to be the case, once upon a time.
if we refuse to have an annual blood test when they ask for one , then they DO have good reason to refuse to sign a repeat prescription of levo Islandlass
GP's are required to monitor treatment in patients they prescribe levo for.
and they are firmly advised by NICE guidelines to 'avoid prescribing doses that supress TSH'
it's usually possible to get away with it for a year or so ,especially if we have been stable on 'x' dose for years and our previous results haven't scared the horses too badly ....... but sooner or later , if asked to go for blood test , and we repeatedly avoid it , they will usually say "we can't sign repeat for levo until you've had bloods done"
Thanks for clarifying that for me. I had not been near them for years, sort myself out now but had to visit for another problem, that is why I sent them the information which was from credible scientific sources. I also know in my case they are supposed to speak to the patient before any changes in treatment and give reason for it. I wonder when they were elevated to the god status, still some good guys and gals in there if you can find them.
I tried to find some evidence one way or the other and found this-
GMC guidance on prescribing
Good practice in prescribing and managing medicines and devices
Deciding if it is safe to prescribe
20
You should only prescribe medicines if you have adequate knowledge of the patient’s health and you are satisfied that the medicines serve the patient’s needs. You must consider:
* the suitability of the mode of consultation you are using, for example face to face or remote, taking account of any need for physical examination or other assessments (see paragraphs 21 to 26)
* whether you have sufficient information to prescribe safely, for example if you have access to the patient’s medical records and can verify relevant information (see paragraphs 27 to 33)
* whether you can establish two-way dialogue, make an adequate assessment of the patient’s needs and obtain consent (see paragraphs 34 to 38)
* whether you can share information appropriately after an episode of care (see paragraphs 53 to 58).
And further down:
Can you establish a dialogue and obtain consent?
Establishing a dialogue
34
You must establish a dialogue with your patient to help them consider information about their options and so they can decide whether or not to have care or treatment. Good dialogue should give both you and your patient the opportunity to ask questions to get the information you both need.
35
Together with the patient, you should assess their condition before deciding to prescribe a medicine. You must have or take an adequate history, which includes:
* any previous adverse reactions to medicines
* current and recent use of other medicines, including non-prescription and herbal medicines, illegal drugs and medicines purchased online or face to face
* other medical conditions.
36
You should encourage your patient to be open about their use of alternative remedies, illegal substances and medicines obtained online or face to face, as well as whether or not they have taken prescribed medicines as directed in the past.
37
If you need more information to help you decide which options would serve the patient’s needs, you must ask for it before recommending an option or proceeding with treatment.
—————++++++————
The angle for this is for GP wanting to prescribe to a reluctant patient. It’s not about reducing or cancelling prescriptions!
A GP doesn’t have to prescribe if they don’t think it is safe .
But they should consult with the patient.
That’s the best I could find.
Wow, things have changed somewhat, well done, I would never have found this information, I am noticing it clearly states consultation is a must. In the past if you did not go along with the GP 's recommendation you could request another opinion, and if I remember correctly name your 2nd opinion, that is not mentioned. Thanks again , much appreciated.
I’m sure the right to a second opinion still exists. This bit was specifically‘deciding if it’s safe to prescribe’ - which was the closest I could find to ‘can I just cancel my patient’s prescription’. It’s guidance for GPs - I’m not sure there’s anything on patient’s rights! The need to consult with patients seems to come under ‘best practice’ rather than mandatory.
That is what I wondered, things have changed so much and when you are ill and struggling to understand the complexity of what has hit you out of the blue would make standing up for yourself another hurdle to cope with. JBL312 Is in the midst of the struggle right now, poor lass.
Well done you! I'm adamant i won't reduce. I'll keep changing doctors until I get one to at least listen to me. God bless you too.
If you ever see that GP again, suggest she goes into the research side of medicine as her bedside manner is non-existant!
This is quite a good read and gives you some papers you can quote -
thyroidpatients.ca/2021/07/...
Remind the doctors that they are supposed to be working in collaboration with you, not dictate. You never have to agree with anything!
Just a thought re the back pain - have they at any point done a creatinine test to see if your kidneys are working OK? Pain in one spot for that length of time suggests not muscular.
Keep battling on! It should not be such a surprise and a treat when we are treated properly!
I feel your pain.
As I’ve said many times before we desperately need a leaflet (with references) we can present to the medical profession explaining the situation with low TSH which in our cases means we are NOT overmedicated,
It’s like having to reinvent the wheel every time and can make you feel so angry, frustrated isolated and alone.
I like this one on Medscape - you may have to do the free membership before you can read it though.
academia.edu/121528655/Rede...?
Conclusions: Thyroid hormones levels, and in particular fT4 levels, seem to have stronger associations with clinical parameters than do TSH levels. Associations of clinical parameters with TSH levels can be explained by the strong negative population correlation between thyroid hormones and TSH. Clinical and research components of thyroidology currently based on the measurement of the thyroid state by reference to TSH levels warrant reconsideration.
I'm in the same boat--I've been on Armour forever, and whenever I was convinced to try alternatives, I felt awful--but now I have a new endocrinologist. She's wonderful overall--but insists that a fully suppressed TSH is very dangerous for future cardiac/bone density issues. My bone scan came out perfect, and a cardiologist also said there's nothing wrong with my heart.
My Free T3 and Free T4 are both definitely in range, but in the bottom half of the range for both, so I feel exactly about as well as you'd expect: passable, but not great. Having sublingual d3 and b12 helped tremendously, as both were below range, and now are in range.
I'm still looking for more academic articles to convince her to allow a very suppressed TSH (like 0.07) as long as the symptoms are more hypo than hyper, and the Free T3 and T4 are not too high!
-Lost
I don't have time to reply fully bit check my posts for a draft letter you can amend to send to your doctor
plus download this research
Redefinition of Successful Treatment of Patients With Hypothyroidism. Is TSH the Best Biomarker of Euthyroidism?
Stephen P. Fitzgerald1,2*† and Henrik Falhammar 3,4,5†
you can DM me for a copy of the draft, its too big to post.
I have had a similar issue with my doctor where I went along with their plan for a few months as they blamed my new night sweats on my ‘overtreated thyroid’ (mine’s been stable at 0.0 something for 25 years). I ended up with high blood pressure, palpitations and put on half a stone. So I went back to my usual supplementation and all back to normal. They weren’t keen to support but so far have until I get another blood test.
This book is what I will be quoting from…Understanding Thyroid Disorders by Dr Anthony Toft.
Thank you, I will take a look at that book x
Over time, those with thyroid issues on HU have said your medication should reflect the way you feel - not the blood results.
OMG. Your TSH levels are SOOOOOOOOO LOW!!😳😳😳😳. Are you on thyroid meds? Holy mackerel. 😳. I have to stay at .4 TSH because I had an aggressive cancer and that's considered low. Periodically, as dose changed over the years, I sometimes would experience very bad shortness of breath. Turns out it was caused by a TSH of .13!! Dropped one pill (100 mg) a week and am now where I should be. Second time it happened to me so I kind of knew that was happening. I'm really surprised your endocrinologist hasn't said anything!! (Unfortunately I now have major lung embolisms caused by my cancers that cause extreme shortness of breath but yours most def sounds a way too low TSH!!! Dropping the pill never did a thing to my T3 or T4. What i find bizarre was that your doc was going to raise your dose first!!!!
Suppressed TSH
Suppressed TSH
GP visit
Is GP over worrying about my TSH level?
Yet another GP obsessed with TSH
