I am taking T3 and various supplements with support from Dr BDP. But my question is, should I confess all to my GP? I have a strong suspicion that he will be very displeased even though I am so much better both physically and mentally.
His attitude has always been that I am being too presumptive even asking for my blood test results, and when I was finally given a grudging 25mcg increase in my Levothyroxine he was barely able to control his anger and actually looked at his watch and told me my time was up!
I thought about writing a letter telling him what I am taking and how I feel, and giving it to him at my next appointment, asking it to be filed in my notes along with copies of my private blood tests.
What do my fellow TUK Support members think? What would you do in my situation? Changing my doctor is probably not an option given that I am in a village and the surgery is the only one which serves several villages in this area.
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marram
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I'm in a similar situation (only with T4 though) but my main fear is being struck off which is the worse thing that can happen if you confess. What's the worse thing that can happen if you don't confess - yes you could get yourself in trouble by self medicating BUT you still have your GP to full back on if you find this happens, you would then have to confess all BUT you would still be able to access your GP. He sounds pretty useless but better than no GP at all.
My GP is lovely and understanding but I still havent told him that Ive seen Dr P or that Im on T3 only. I want to wait until I am so much better (and I am already part of the way there) to confront him with it. His attitude is "life is for the living" and Im hoping he'll take that heart when he sees how I am.
Even though I say he's lovely I am equally really worried about confessing all. I also wondered about writing a letter first. What I want to say is that I feel so much better, that I know he would have been in a comprised situation hence why I went to see Dr P because I still felt very ill, that I am now much better but that I would rather do this with a GP overseeing what is happening, maybe even an appointment with an endocrinologist.
Good luck with what you decide to do. Keep us informed.
If you want him to test FT3, FT4 & TSH in future I'd write enclosing the private results, your treatment protocol from Dr.BDP and ask whether he will treat you on NHS as you're feeling so much better.
If he gets snitty, remind him it's your illness and you are entitled to seek a second opinion in managing it and you are entitled to access your medical details and have copies of your test results. Instruct him to place the correspondence in your file.
FT3! Joke! He says it is irrelevant. I have only had my FT4 tested once in 8 years, and he could not fathom why the lab had done so, he treats on TSH alone. As we all know, that is the only test which matters. LOL.
When I took past blood tests to Dr P I had 19 years worth of them and many had a very low and out of range FT4 where the hospital had also said (low) in brackets. I worry that it was always not diagnosed when I had so many of the symptoms. I want to put it to him that this is my worry but I dont want him to think I was superseding his judgement (although I obviously have done). That could irritate him.
What really should have been happening about the low FT4 do you think?
I tell my GP all that I am up to sometimes straight away sometimes with a 'time delay' of a few months but tell her everything really.
She ignores all advice by my private doctors but I just love telling her how thanks to Dr M and Dr S (my private doctors) my thyroid condition is so well managed, my bone density IMPROVING, my gallstones have disappeared, my weight not increasing, my chronic thoracic back pain has gone and on and on. I keep singing my private doctors praises and I am sure she is fed up of it but I still tell her.
last time I have booked a DOUBLE appointment to make sure I had time to tell it all LOOOOOOL
Excellent! That's the way to do it! Lol! Love the 'double appointment' - genius! Kxx
I haven't got any secrets at the moment (but that may change) as my GP is leaving everthing to my endo and goes along with whatever he says. Not by choice, I have ended up on T3 only because the T4 was causing me massive problems. If I cannot re-introduce the T4 at some stage I would prefer to take NDT, but thats another story.
Because of the short half life of T3 I am worried that in an emergency, say I was in an accident and unconscious, if my GP or endo didn't know what I was taking and I didn't get my T3 daily, I would quickly run into problems.
I might be over-reacting but it is what worries me.
I'm kinda hoping they'll spot my almost invisible TT scar. I believe you won't snuff it for 3 months without meds. Surely someone would notice before then and bung a drip in
Sorry if my reply appears twice but there seems to be a glitch in the system.
I am so glad you are doing well. You sound rather like me, except I am not doing so well and have thought of visiting Dr S but I would be grateful to know who Dr M is.
I worry about that too and have had TT, so I have registered with a company who holds my records and I wear a bracelet with my name, what is wrong and the telephone number of the company who know what meds I am on. I feel so much more secure now, especially as we go often to France, with a long car journey. Being anxious most of the time, I am always waiting for a car crash!
I think that is a very sensible approach for anyone who has unusual issues - but most especially if they are taking any medicines which have a short life and are important, like T3. Obviously any self-medication makes this an even more important thing to do.
However, it is all too easy to allow the information to become out-of-date or difficult to follow.
It is also very difficult to see what a hospital would do if you take medicines which they do not properly understand, or they cannot get hold of, or whatever. So a proper explanation might be advisable.
I am with dr P and started T 3 this morning. I have to take sleeping tabs to get off and every time I run out I worry as been on them long time that there will be a phone call from GP and I'll have to get into whole subject. He and anther lady dr dx me with cfs in June after being presented with a4 side of symptoms from me.
Soi am sure subject will come up at some point but I'm not rushing down there to fill him in. I just need all my strength to get better and not in headspace to try and convince him. I'll probably get upset.
But when head together bit more and can prove dr p's treatment works will ask for t3. By sounds of it i won't get v far but worth a try. Also this whole terribly mess of lack of diagnosis makes me angry and going in like bull in china shop will no doubt get his back up. Plus he has been good to me in some ways with anything I needed last yr when I had breast cancer.
Another person I Feel i have to tell whats going on is my oncologist as back in June she wrote to dr also urgently recommending CFS clinic when I had follow up with her.
So two drs to convince!!
Hard when its such a complicated subject i don't understand half time myself.
There should never have been the slightest doubt about my diagnosis since I do not have a thyroid! But after reducing my Thyroxine by one third and seeing my cholesterol rise from 4.7 to 9.7 in 8 weeks he utterly denied any possible connection. Last time I saw him he kindly added an enlarged heart to my list of woes. That was what decided me to see Dr P - I think my GP was on the way to killing me!
I am not sure that someone like that has the willingness to learn, but if I can teach him, what a boon for all the other hypothyroid patients the district!
I live in a very small village too. I've taken the decision to totally ditch Levo. They know i am taking Armour (so does the endo) and i think they know i'm a pretty strongminded and resourceful person. My question is do any people self medicating refuse blood tests? That's where i am now, if i'm treating myself why should i offer myself up for blood testing? I don't see the relevance of numbers on a piece of paper, and my only experience thus far is it putting back my recovery. I'm taking temps pulse etc and being very sensible i might add.
I don't now what it is with village doctors, they seem waaaay behind on most stuff, but the biggest thing is they find it hard working in a partnership with the patient. They also seem to prescribe whatever is the most of in the dispensary. A case in point, athletes foot cream for anal fissures?? I told a pharmacist in a small town within the county and her face was a picture!
The best option is to be open and honest and stick to your guns. Xx
I think that if you have a good news story about your treatment then you should definitely tell your GP. They need to be given as much information about diagnosis and treatment as possible and learn where they have gone wrong. Jane x x
Yes we do have a duty I think to spread the knowledge......same here Marram I would have been bed bound by now if it wasn't for taking matters into own hands and this site.
Funny when you mention to people that you are taking this route they look at you like your mad. Or some misguided hypochondriac.
My doctor is aware of what I'm doing. I showed him my original diagnosis letter from Dr P and the results of my 24hr cortisol test were also sent to him. Just this week he finally asked me what I was taking. I told him. His verdict - "there's nothing that would give me cause for concern".
He spoilt it by then saying to me "of course whether it's what you are taking that is making you better..." I cut him off and told him to stop. He shut up.
Been here too. Took my health into my own hands back in March. Saw Dr P also.
Am close to being off thyroxine since, after changing GPs and 8 months of working through systems - adrenals, thyroid, liver, immune system and THE MOST IMPORTANT digestion I am not only symptom free but feeling human again. I think finding a doctor you can partner with is only part of the solution. I've also worked with a functional practitioner, a gastroenterologist, a hematologist and a medical herbalist. The sad thing is in the UK you simply don't seem to be able to get proper treatment from one person who looks at the whole picture. So...I've had to do this myself. Lots of tweaking required. Some tests but mostly going by symptoms (with tests afterwards as a sanity check). I stopped trying to partner with a doctor who wasn't interested and seemed more hellbent on prescribing 'antis' (an antibiotic, antacid, anti-inflammatory and antidepressant!) that thinking about what was causing the symptoms and working on that.
I urge you to spend your precious energy finding what's at the core of you condition(s), remembering the body has an amazing ability to regenerate cells and tissues, and focussing on yourself vs trying to educate doctors.
I started on the doctors and had to get really frustrated and angry before I redirected my energy! The results have been amazing. Lots of mis-steps and rabbitholes along the way.
wilsonhealth360.com can take you through the journey starting at thyroid/autoimmune.
Oh, what a wonderful post! I agree wholeheartedly! I, too, have been the subject of the 'antis' over the years. I haven't (yet) seen anyone privately, but am lucky to have been allowed T3 through an NHS Endo. I am now on T3 only and only 3 weeks on from dropping T4 altogether, I feel so much better! This was only achieved by arming myself to the hilt with information and hoping that I had the wits to remember which piece of 'evidence' to put on to the desk next, to back up what I'm saying!!! My GP is on maternity leave and I've been very lucky with her locum (who is an older, semi-retired GP) who took the time to read all of my notes and is keen 'to try things out'. He said that younger GP's 'have only been trained to read the numbers and don't like to deviate from them' (must admit I fell a little bit in love with him when he said that, lol!). But now that he's got me on B12 injections and T3 only, I'm terrified my GP will have a hissy fit on her return and remove them ( she controls the practice budget and won't like my 60mcg T3 per day). Isn't it dreadful that we have to fight our corner all the time when we are already so debilitated? I've found generally that the lack of knowledge of thyroid issues is breathtaking.
I too am approaching the time when I will be T4 free.
I am hoping that the financial savings will encourage my GP.
Oh, no, I forgot. He will actually LOSE money because I'm not on statins, not on Anti-d's, probably soon off the Clopidogrel, no longer go to the asthma clinic - oh, dear, what kind of a patient am I?
My repeat prescription list used to read something like this: T4, anti - inflammatory, aspirin, anti-depressant, statin, eczema cream and Seretide for COPD. Now it says : T3.
Thank you to everybody for your encouraging replies and thanks NBD - amongst others - for giving me a good laugh. I know we should not be stressed about a GP appointment but mine is really, really old school.
Never mind the guidelines 'if the patient has knowledge about his/her condition, allow him or her to use that knowledge in making decisions about treatment' - it is very clear that he is not at all comfortable with knowledgeable patients.
He's not uncomfortable with everybody, though. He seems to get on VERY well with Drug Company reps. I cannot recall a morning appointment when I did NOT see a rep in there. You know them by the trolley they drag behind them laden with poison - oops, samples. They must finish their day quite early though, you don't see them in the afternoon.
I too am taking a supplement. I am prescribed 100 mg of levothyroxine, but I also take a half tablet daily of 25mg T3 purchased from Mexico. I can tell you nearly all my issues have now been resolved. I am on a strict diet which is actually working, albeit a bit slow, I have lost 8ibs and now weigh 11st 6ib. I go for a blood test and hoping my blood results will come out good. Then its time to confess to the Doctor. I felt terrible before I added the T3
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