I want to try to convince my GP to leave my thyroid medication “up to me”. I think she will be more receptive if I provide research on things like combined T3 & T4. However, it might be trickier to get her to ignore the TSH level … so I am looking for help and point me in the direction of some research papers or concise information that I can take with me to my next appointment. There are so many helpful links here but I think some of them might be “too much information” for a doctor to quickly digest in a short appointment.
Or, if anyone has suggestions on how they successfully handled their conversations to get what they wanted.
I hope this post makes sense. And as usual — thank you so very much for any info you care to share.
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Hunny_BEE
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I think it depends upon whether you are better in a “one to one “ situation, fighting your case verbally, or whether you are good at writing your reasons in an articulate letter. I find in a one to one situation, I often forget an important point, or find the doctor so difficult to handle that I begin to lose the thread of what I want to say.
In the past two years, I have had to fight my corner twice. Once about keeping my dose of HRT that I was given after a hysterectomy and one where the CCG was querying whether I definitely needed my T3 prescription. In both cases I was face to face with the consultant but I had typed a clear, concise document, explaining why I needed each prescription. I handed this over immediately when I arrived and let them read it. Each consultant said it was very useful, asked if they could keep it and then chatted in a friendly manner, asking a few questions. Then oh joy, said they could see no reason why I should not continue with the medication. In the case of the T3 prescription I promptly burst into tears of joy - not my finest moment but I think it reinforced to the consultant how important it was to me. Both consultants sent excellent letters to my GP and so far all is well. (Until the next bit of NHS money saving comes along).
I feel sure someone will come along with some useful points for you to make and I know Dr Toft has written on T3 and low TSH. Someone may send you a link. Hope it goes well.
Thank you for your reply. I will look up Dr. Toft.
Really good advice to write it down and hand it to them right away. I have compiled a “questions list” in the past and simply referred to it during my consultation. Your method sounds more compelling. To give them reasons why that strongly states your case.
I too have been brought to tears when a physician finally understood. I had to have surgery for a rare disease - Eagle’s Syndrome. It took many visits to my GP & ENT before they finally figured out that I wasn’t just complaining of a sore throat – for who knows what reason. He discovered the problem when he reached back into my throat and could actually feel my elongated Styloid Process bone poking underneath the skin - (about where your tonsil are).
I understand what you are looking for and why, it's difficult though. If a doctor is prescribing you a medicine or hormones then they are responsible for how much, and when you take them. They could lose their medical licence if things go wrong. You do have to respect that to a certain extent despite they don't know how to make us well.
So you can use persuasion and take them medical papers on relevant matters and hope they take that on board. You can try and find a different GP or Endo that might be more amenable, but you also have to concider how they are seeing you as a patient, and it's not a good thing to be seen as difficult or uncooperative.
You could try a private Endo or doctor who is known for helping people get well. Likely you will end up paying for consultations, bloods and hormones. They can then guide your GP and you might get Levo still on the NHS.
Lastly you can self medicate, buy your own hormones, self test and treat. It's risky though and likely frowned on by the establishment.
Personally, and having been down the NHS route trying to sort out NDT which was an unmitigated disaster ( a long time ago), I've chosen to head to a private Endo who was recommended to me. So far so good.
What you also need to realise is this is all a very slow process so a lot of patience is required. I hope whichever way you choose is successful for you.
I should have mentioned that I am in the US. However, your advice is still very appreciated and very pertinent. If anything, I probably err on the side of being too compliant with my doctors — which is how I ended up in the situation that I am now — way under medicated. And the crazy thing is — it was an Endocrinologist that put me on this path! I am going to speak to my GP and if that doesn’t work I will seek out a Functional Medicine Physician. As I understand it, they generally look at the whole person rather than just looking at the “ranges” etc. However, they are usually not included in insurance plans.
The slow process is sure challenging as well. Waiting 6-8 weeks to recheck blood work is always a struggle for me.
A lot of what I said stands regardless of what country you are in. Try and find a recommended Functional Medicine doctor then?
This is a long game we are in here, for life. You're not going to start a dose and then a few weeks later wake up and all your symptoms are gone. It just doesn't work like that. You will probably have to be at your correct dose for a few months before you know it is right for you. If you keep switching even before you've had time to get bloods done then you will miss where you need to be, and may as well be starting back at the beginning. That's if you've got your vitamin levels to optimal. How are they looking?
Agree with the “for life”. This started for me in 2006. I was actually doing pretty well on the T4/T3 combo but because my THS was out of range, I let the Endocrinologist talk me into trying NPThyroid - but at far too low of a dose. I went downhill fast from that change.
These labs (except for Ferritin) are within the last year to year or so — but you’re absolutely right, I need to have them all rechecked.
Vitamin D: 87 ng/ml [30-100 range]
B-12: 762 pg/ml [232-1245 range]
Folate: 16.6 ng/ml [3 -range]
Ferritin: 160 ng/ml [15-150 range] labs are from 2020
I have had this problem, I take very high level of levo and my blood results are always crazy but I feel very well on this dose. Every time I come across a new doctor we have a massive disagreement about my dose. Doctors tend to look at a computer screen to check figures. I ask them to examine me and challenge them to find signs of overdosing.. there are none...I point out that |I have been taking this dose for years without any problems. I also point out tht they are just looking at figures on a screen, not looking at me as a human being. I was referred to a consultant for a telephone consultation. He too was very concerned about my test results. I explained to him t hat he was just looing at a computer screen and if I was there with him he would see I am not overdosed. He accepted this and came to the conclusion that my body must have adapted to the higher dose. I am convinced that doctors must realise that everyone is different and the actual experience of the patient is just as important as figures on a screen. I now tell doctors that the blood test results although crazy, are 'normal for me.;
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How much thyroid medication to reduce tsh by X amount?? Your personal stories and dosages welcome:)
A huge thanks to Thyroid UK for showing me how to deal with my GP!
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Your views on medication side effects and how they should be reported to improve patient safety
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