Researching your own thyroid health

"I tell all of my patients and clients. You must be educated in the process of restoring health and immune integrity. I do not expect you to become a doctor but I DO expect you to become an expert in YOU and what YOU need to express health."

Dr. Steven Geanopulos

Dr. Steven Geanopulos is a Chiropractic Neurologist from the New York/New Jersey area, with a private practice in Manhattan

I read this today on another thyroid forum. It makes so much sense and yet many GPs seem to be against individual's carrying out researching into their own condition. Such a shame.

25 Replies

  • We should be able to find someone we can work with - as a team. Someone who is happy to work towards wellness and search for the root cause rather than hastening the end of the appointment with a prescription pad.....

    Scroll down for the 4 minute video that supports my comment above :-)

  • Thanks Marz. Good video. He spoke a lot of sense.

    Unfortunately time in front of the gp is a major issue that impacts on the whole relationship. As a patient we walk in knowing our time is very limited and try to explain so much about life affecting symptoms whilst also being conscious of not wanting to take up too much time.

    However the worst thing for me is the natural arrogance of the doctor. The need to prove themself superior and to dismiss you, your comments, concerns, feelings or a need for an explanation. How does that become a common trait in so many drs.

    Is it that the more arrogant are drawn to medicine because if the 'god like' power the role provides; are they trained to be arrogant (learnt behaviour from their tutors and professors); or is it something that develops over time because as patients, we give them that power? We walk in to THEIR domain seeking help. When we receive a diagnosis and/or a prescription we are so grateful for an answer that we gaze upon them adoringly, grateful.

    I don't know the answer but it seems an epidemic within the profession and we as patients are the collateral damage. We fall along the way side under their 'friendly fire' with little more than a shrug of the shoulder and a look that says 'Off you go dear, you've had your 5 minutes. '

  • I think it goes back to the selection process - those straight A*'s in the sciences. We do put children on a pedestal based on exam results it seems. There was a time when the selection for Med Schools was done on results without interviewing the students. This produced a generation of Docs that really did not like connecting with the patients. So I think that has changed. I think they are possibly told they are special when at school - and so they act as if they are.

    I was once in hospital for six months - in a teaching hospital in Bristol. ALL the Docs were amazing - but that was back in the early 70's - perhaps things have changed. Ah whilst writing this I have realised what it could be ....... the training and the Guidelines are influenced by Big Pharma and this has become greater in the last 25 years or so - perhaps even longer. The prescription pad rules. I have also read that over 80% or more of the up to date knowledge Docs have gained - is from the Drug Reps. This was research done in the US.

    Interestingly I do not feel the attitude is the same here in Greece. Yes the people that become doctors are usually from good and moneyed backgrounds - but they certainly treat you as an equal in most cases. My experiences have been very good. You even have their mobile phone numbers ! I once rang a Doc - and was asked if I could call back as he was in theatre !! Everything is very relaxed and there is not that feeling of control - as we keep ALL our records and can go and see anyone we wish. I have even had surgery in the NHS here - but won't scare anyone with those stories :-) Actually it was fine - different but fine.

    The good Docs are out there - so many good blogs from great guys when the strike was on - I am wondering if perhaps the GP's are suffering due to constraints and their unfortunate manner - in some cases - is a protective shield.

    I think that Dr Chattergee has the right idea - 4 days working as a NHS GP and one day a week to see patients privately so he can give them all the time they need. OK I hear people say - not everyone can afford to go privately. If those that can - do - then that takes the pressure off the surgeries and GP's for those that cannot afford it.

    Time to stop rambling :-) Good topic of discussion corinbruce :-)

  • Thanks Marz

    I love the sound of the way things are done in Greece. A much more collaborative relationship. I agree with you though - there are a lot of very good drs here. Stress must play a part in how they respond to us but I'm sure if there was the opportunity to build a better relationship with our gps everyone woild win. If, as they do in Greece, I was able to access my gp for questions or more information, I'm sure they would prefer to be as open as possible during the office consultation. An inclusive diagnosis between the patient and the dr - how lovely would that be!

    Regarding you final comment - thank you! You are fast becoming my secret favourite (don't tell anyone) 😊 x

  • What annoys me about doctor attitudes generally :

    I am not stupid. I am literate. I can even read scientific research and get the gist of quite a bit of it, and I can often pick holes in it too. I am far from alone in this, there are lots and lots of non-stupid people about. But medical attitudes suggest that I must be stupid if I show the slightest curiosity about my health. Why?

    Also, to take a specific problem :

    If, for example, my TSH is 4.5 with a reference range of (0.3 - 4.5), this is (allegedly) fine. I've seen posts where some people with a high-in-range TSH have been told they can't have more treatment because their TSH is in range, and to prescribe more would be unethical. But clearly the doctor has no idea what will happen to the TSH if levo is increased by 25mcg if they never experiment. It might end up being 1.0 (i.e. still in range) and the patient feels better than before. It might go under the range and the patient may feel over-medicated (unlikely but possible). But being over-medicated is unpleasant. So patients should be told that if they feel symptoms of over-medication (and those symptoms are explained), they can reduce their medication again if they want. They shouldn't be denied the chance of actually feeling well. But they often are.

    I remember reading a story on here some time ago about a doctor who was at a social evening for the medical profession. This doctor asked an endocrinologist "If you had a patient who had a TSH of 4 with a dose of 75mcg levo, and a TSH of 1 with a dose of 100mcg levo, and the patient felt better on the higher dose, which dose would you prescribe?" The answer was 75mcg. This story came out because the doctor who posed the question told one of their private patients. This is the kind of attitude that makes me think many doctors are sadists.

    But no discussion is ever held with the patient about risk, unless it is skewed to demonstrate what the doctor wants the patient to believe. Why is routine lying (or lying by omission) to patients acceptable? Why can't I decide for myself which risk(s) I want to take?

    My feelings about risk are :

    If I feel better then that is good. If by making myself feel better I reduce my life span, then so be it. I would rather have 10 years feeling semi-okay, than 15 years of feeling appalling, unable to think, and racked with pain. But doctors disapprove of me having that choice. Why? I'm in my 50s. I think I've been hypothyroid since childhood. But the medical profession would happily keep me untreated for the rest of my life because my TSH has never reached the giddy heights of 10.

  • Exactly! My TSH only ever got to 4, but I can honestly say that if I had not self medicated I would be dead by now. I had never been so unwell in my life & I would rather die than have to go through that again.

  • It takes confidence to start self medicating so it's good that you kept faith in yourself. It's hard in the face of constantly being told that you're wrong.

  • I became so severely unwell so quickly that I really felt I had no choice. I learned enough to know that 4 was too high & when my private test showed antibodies 100 times above range I knew I was right.

  • I am so impressed with your confidence Harry. I hope I know the right thing to do if I need to. There are so many people on here with good advice and guidance. Whenever I read stories like yours, they give me strength to keep pushing for the help I need. Thank you x

  • You're welcome, but it didn't feel like confidence at the time. It just felt like desperation!

  • Corinbruce4164,

    My health deteriorated badly after I was switched from T3 to Levothyroxine post RAI. Endo insisted Levothyroxine didn't cause adverse effects yet I felt better off Levothyroxine for 4 weeks when I had more RAI and bad again when Levothyroxine was resumed. That's when I started self medicating. 6 months later endo agreed the T4+T3 combination improved my health and prescribed at the doses I was self medicating.

    Last summer dose was decreased slightly and endo said stick with current dose because he didn't want T4 (14.1) and FT3 (5.0) dropping, yet 2 years ago he was content that FT3 was below range (3.1) :O

  • That is absolutely shocking - that an endo could be happy with a below range FT3!

    But sadly it doesn't surprise me any more.

  • Hello Clutter. Maybe in that two year period your endo had improved his knowledge and understanding of how thyroid management should be addressed. I'm so glad that you got the right treatment in the end.

  • Corinbruce, dunno what brought about his volte face but I still feel a tad bitter that I didn't get the support I desperately needed back in the day when I was in a very poorly way.

  • It's wrong that anyone should have suffered the way you did and so many others did. What you experienced and the guidance that you are now able to give will and does help others to push harder with better knowledge and information. It does make me wonder whether he looks back and regrets some of his actions or worries about some of the harm he may have caused. I hope his change in attitude to your care has gone on to help others as well.

    Don't forget, sometimes, especially when we are at our most vulnerable, we don't have the energy to fight a battle we think we can't win. You were not at your best (probably close to your worst), you can't blame yourself for someone failing you. Glad things are better for you x

  • Corinbruce, the only thing I blame myself for is not trusting my instincts and taking control earlier. I certainly hope that he listens and is less dismissive if other patients complain similarly.

  • When I read what you have said, it just reinforces the fact that I have to do just that and trust my instincts for my own care. My mum always taught me from a very young age to follow my mind (trust myself).

    You got there in the end. It's just very sad that you had to suffer so much along the way. Thank you for your advice. I have to have faith in myself to know to do the right thing.

    Just think, no one could do that to you again.

  • Confidence or desparation.

  • Good question Greygoose. If I'm honest, right now I am see-sawing between the two. But I don't want my fear to paralyse me into doing nothing either. That's a good question for me to think about.

  • It's very sad that as patients, our needs come so low on the agenda.

  • We are expected to decide whether or not to have an operation after (at least in theory) receiving sufficient information to give informed consent.

    When it comes to medicines - like thyroid hormones - there is precious little informing. There is no place for patients to express their consent (or rejection) properly.

  • Excellent point! I'd never thought of it like that before.

  • GMC Guidance on consent:

    Consent guidance: Sharing information and discussing treatment options

    7. The exchange of information between doctor and patient is central to good decision-making. How much information you share with patients will vary, depending on their individual circumstances. You should tailor your approach to discussions with patients according to:

    a. their needs, wishes and priorities

    b. their level of knowledge about, and understanding of, their condition, prognosis and the treatment options

    c. the nature of their condition

    d. the complexity of the treatment, and

    e. the nature and level of risk associated with the investigation or treatment.

    8. You should not make assumptions about:

    a. the information a patient might want or need

    b. the clinical or other factors a patient might consider significant, or

    c. a patient's level of knowledge or understanding of what is proposed.

    9. You must give patients the information they want or need about:

    a. the diagnosis and prognosis

    b. any uncertainties about the diagnosis or prognosis, including options for further investigations

    c. options for treating or managing the condition, including the option not to treat

    d. the purpose of any proposed investigation or treatment and what it will involve

    e. the potential benefits, risks and burdens, and the likelihood of success, for each option; this should include information, if available, about whether the benefits or risks are affected by which organisation or doctor is chosen to provide care

    f. whether a proposed investigation or treatment is part of a research programme or is an innovative treatment designed specifically for their benefit

    g. the people who will be mainly responsible for and involved in their care, what their roles are, and to what extent students may be involved

    h. their right to refuse to take part in teaching or research

    i. their right to seek a second opinion

    j. any bills they will have to pay

    k. any conflicts of interest that you, or your organisation, may have

    l. any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.

    10. You should explore these matters with patients, listen to their concerns, ask for and respect their views, and encourage them to ask questions.

    11. You should check whether patients have understood the information they have been given, and whether or not they would like more information before making a decision. You must make it clear that they can change their mind about a decision at any time.

    Plus, of course, other pages on the same site.

    Does anyone feel that the above guidance was actually put fully into practice with respect to their hypothyroidism?

  • It's a bit like reading about doctor/patient relationships in another dimension. I think you'd probably need a corruption in the fabric of space/time to get all of that into a standard appointment of 5 - 10 minutes.

    And with regard to my hypothyroidism, my doctor doesn't believe I have it. She thinks I only have subclinical hypothyroidism and don't need treating. I was diagnosed by Dr Skinner and his diagnosis was ignored.

  • At least with some things you get an information booklet. (E.g. endoscopy or MRI.) Imperfect they may be but it is a start. I absolutely appreciated the one I got for an endoscopy - made my choices very clear.

    A booklet like an improved version of Toft's inexpensive book should be a fundamental starting point. I imagine surgeries having special booklet printers so they can, on-demand, print them. If that is a bit over-ambitious, send a request to an existing print on demand company so they can print it and pop it in the post.

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