This is my first post and resulting from me feeling very frustrated and upset after speaking to my GP today. I was diagnosed with hypothyroidism and Hashimoto's about a year ago and have been battling with symptoms on and off, trying to get my GP practice (a different person every time) to listen to me. It's only in the last few months that I have learnt more about my condition and how so many people are struggling to get the right medication from an NHS doctor.
I've recently had a consultation with a functional specialist privately who has now prescribed me with T3 and LDN, which I am just waiting to be delivered now. However, I needed my regular GP practice to provide me with a sick note to sign me off work today, hence the call. It was such an upsetting conversation as he insisted that my latest test results were all normal. I made the points about him only having tested TSH and T4 and how did he know I was converting T4 into enough T3, that the reference ranges are very broad, that I still had all these symptoms and that so many people struggle with their GPs not listening to them.
He got very stroppy and argumentative with me and completely rejected my points, saying that they only tested TSH and T4 on advice from endocrinologists and that he didn't appreciate me saying he didn't know anything (which I didn't), still insisting that my numbers were all normal and that it must be something else, that they didn't consider the high antibody numbers to be relevant, that I should be grateful that he called me to discuss the issue rather than reject my request for a sick note!
In the end he agreed to get my T3 tested and said that he thinks it will be normal and they will start to look at what other causes might be. I found the whole conversation so dismissive and condescending. Has anyone been able to convince their GPs to think differently about this? It really does make me doubt myself and everything I've learnt but also very angry to have been shut down like this.
Written by
Desert79
To view profiles and participate in discussions please or .
In the end he agreed to get my T3 tested and said that he thinks it will be normal and they will start to look at what other causes might be.
OK! That says it all. He's let you nose first into the trap and closed the door behind you.
When a doctor says 'normal', all he means is 'in-range'. That's all. He has no idea if it's normal for you, or anybody else for that matter. He either doesn't understand about ranges, or doesn't want to. So, have a look at this article and keep it up your sleeve...
The normal range: it is not normal and it is not a range
1. Martin Brunel Whyte
2. Philip Kelly
Abstract
The NHS ‘Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ‘normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ‘reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding.
dx.doi.org/10.1136/postgrad...
pmj.bmj.com/content/94/1117...
So, he's on a winner there! Pretty certain the FT3 will come back in range - if it were below range you'd probably feel a whole lot worse. But, just becuse it's in-range, doesn't mean it's good. But, he will now be able to say 'I was right, it's 'normal' and dismiss the whole thing. And, you will have lost any credibility you might have had.
He's wrong, of course, all the way down the line. The most important number is the FT3, which is probably why it doesn't get tested. They don't want you to get better, just stay alive. Good job you now have this functional specialist, who sounds a lot more clued-up! Good for you!
Oh, one more point. Even if your GP requests FT3, the lab are not obliged to test it, and will probably refuse. I'm sure he'll find something clever to say about that! lol
Thank you greygoose! He was so aggressive and offended by the points that I made, including about the reference ranges not necessarily being optimal for me, that it was clear he had zero interest in listening to me. He's right and that's all that matters 🙄He did say actually that the lab decided what was tested - that was his response to the point about why they hadn't tested my T3. He couldn't answer how he'd know if my body was converting T4 to enough T3.
I'm so glad that I've found a functional specialist now, else it would be so demoralising to continue to have to deal with being treated so awfully
The other infuriating thing is that EVERY time I speak to a GP, they make me recount the entire history of symptoms, tests, results, medication all over again...and they type this all up in my record as if this is something useful! Do they think their job is to make notes rather than actually treat me?!
He was being defensive. He knows he's out of his depth and he doesn't like being challanged - even if you didn't actually challange him, he felt challanged. He has answers, so he's not interested in the questions which would demoralise him even further. And he absolutely doesn't know if your body is converting T4 to T3, that's for sure!
I'm glad for you, too, that you've found this other doctor. Let us know how it goes with him.
Oh, I’ve just accidentally joined thyroid UK to respond to this - but I do have newly-diagnosed adrenal insufficiency, so maybe I’m okay to be here?
I just wanted to say I’m Soooooo sorry for what you’re going through, and I feel every bit of your pain. No one should have to go through this. I am going through the exact same thing with multiple illnesses: being degraded, spoken to with contempt and condescension, being belittled and dismissed and actually being shouted at for asking for help.
I have felt so isolated by all of this, and so alone, and I am so sorry you are going through this too, but at least we’re not alone (that somehow helps me because I’ve been so downtrodden, I’ve almost lost all hope. 😔).
Sorry I can’t offer advice, but I’m am sending lots of goodness and well wishes. X
I am sorry you are in a bit of predicament at present but the majority of us had never thought about thyroid hormones. The majority of GPs seem to know little as well (I have had proof of that myself).
Many GPs don't seem to be really knowledgeable about diagnosing/treating patients with hypothyroidism. I had to diagnose myself when TSH reached 100 as GP phoned to tell me I had no problems at all with my thyroid gland.
I would have requested Free T4 and Free T3. This is an explanation.
What is the difference between Free T4 and Free T3 instead of T3 and T4?
Thank you SlowDragon. The only reason I spoke to my GP was to get a sick note, which meant getting a blood test done. I just humoured them as I am getting what I feel to be the correct treatment from the functional specialist. I really hope that I start to feel better soon as I have had so much time off work and I really want to get back to my normal self.
I am currently taking 50mcg of Levothyroxine (same brand), as well as high doses of vitamins C, D and E.
I have had the advanced thyroid panel of tests done, first thing before taking medication and 24 hours after last dose, with Medichecks and shared the results with a functional specialist. On the basis of these results, as well as a discussion of my broader medical history and challenges, he has prescribed me with Thybon and LDN.
I have changed my diet to be gluten, dairy, egg and caffeine free. I am also due to take a adrenal stress test next week.
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
What were results 6-8 weeks after starting on 50mcg levothyroxine
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
You must have been diagnosed similar time to me. I’m on 100mg now. If I hadn’t joined this site I’d still be on 25mg as GP was happy with my ‘normal’ TSH. Don’t let that functional doctor out of your sight! Keep pushing - you’ll get there. Remember you’re having to work with fragile egos, so try not to take their responses personally. Totally get your frustration. It’s so anxiety provoking! ♥️
Thank you so much! Good grief was the GP fragile today 🙄 Definitely got under my skin for the rest of the day, I couldn't stop playing the conversation over in my mind and wishing I'd answered it differently.
Sounds like I should push the functional doc to increase my levothyroxine dose as well, as he seemed to be happy with it and preferred to get me onto T3 and LDN.
At moment you possibly only need to increase levothyroxine…and work on low vitamin levels
Ferritin needs improving by increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Thanks SlowDragon, that is a treasure trove of information that I will make sure to read through! My functional doctor didn't seem to think that increasing my levothyroxine dosage was the right approach and said I should go onto the T3. He also wants me to use LDN to get my antibody levels down due to the impact on fertility. I will ask him about the levothyroxine dose again.
That's also interesting to see the link between ferritin and restless legs, I have struggled with that for over 20 years! Hair loss is also a big issue for me right now.
Just seen SlowDragon ’s response and was going to say the same. In my humble and not very experienced opinion I would say you probably need to try a Levo increase first? If you can get well on Levo only then that would be good so worth giving it a try. Good luck x
The constant push for a "partnership between patient and GP" just does not work. As soon as you question something, they ego kicks in and the partnership goes out of the window. When I replay a conversation that has gone badly, I like to recall a story I heard from a slighly tipsy GP at a party. He had recently got two kittens, had come down stairs naked, bent to pick up the post, and both kittens were immediately attracted to the two bouncing balls hanging down, so jumped on them. He said he danced around with the two kittens attached for some time.
Yes Desert79, I did manage to overcome this problem so I'm sure you will too. My GP told me "there's no point in referring you because I know as much about thyroid problems as an endocrinologist" and was offended by my still wishing to be referred. I persisted, politely at first but after months of not getting anywhere I pointed out that I would hold the GP responsible for my being kept in a state of ill health if it was subsequently found that the treatment I needed had not been given. She then capitulated and referred me. First endo was awful, would have made me worse so I chose the second one and now am prescribed the meds I needed all along. So, have faith in yourself, and very best of luck.
Thank you, that's very helpful. I think the way the GP lashed out at me really startled me and I don't have any hope of him listening to me in the future. I'm actually going to change my practice now as I had moved out of the catchment area a while ago and hadn't gotten around to registering somewhere local.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help, GP appointment tomorrow still can't get them to listen. 
Why is no one listening t3
do doctors actually listen?
I feel like no one listening.
