I am sure I should have expected it. But I took my recent Dio2 Test result and a print out of all my thyroid blood results over the past 2 years, carefully annotated and with reference ranges and percentage through range to the surgery last week. GP rang me today about something else, I'm back in Afib! I didn't think I was.
I asked if he'd looked at my letter, he hadn't had it. He did go and find it and call me back later. But he said as a GP it meant nothing to him. And because all my test results are in range, as a GP they are normal. He mentioned that I'd seen an NHS endo who also declared me normal and discharged me.
It's so dispiriting isn't it? I feel defeated at every turn. They freak out about thyroid when you have Afib. I thought it was back to normal after a cardioversion in January, but obviously not.
I do see a private endo. I must make a new appointment and "see" him somehow. I hate phone calls when I can't see their faces.
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FancyPants54
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I know. The cardiologist and GP don't seem to know it though. It's ridiculous. My last blood test showed my free T3 at 7.25% through the range with fT4 over halfway. That is the worst I've ever had. But it was inside the range so he doesn't think there's anything wrong. And he's not a bad GP. He's caring.
This link is different to the paper I have found about it. What gets to me here is that they class over 4.3 fT3 as high and they class less than 2 as low. I'm not that low. I'm often around the 3.8 - 4.4 level. My TSH is usually at the top of the reference range. The only time it came down substantially I had my fT4 160% through the range at 28. My fT3 fell and I felt rubbish.
I tried to talk to him about this. But he wasn't interested.
But when you saw NHS Endocrinologist you did not have proof you cannot convert T4. Give the Cardiologist a print out and say you want to be seen by a NHS Endocrinologist so they can work in unison. You do not need to go private or pay for your T3 anymore. They cannot and will not be able to argue a genetic test. GPs in general know a little about something and a lot about nothing. Try not to stress. Deal with NHS only, if they think you can afford private they will wash their hands of you. Plus you need everyone on the same page. Cardiologist will be able to prescribe a lower dose of beta blocker. You don't need T4 only T3 but you will have to stay on heart meds untill you get your levels up. The heart needs T3, T4 unconverted makes Afib worse and causes anxiety. I did try to reply to your other thread but it didn't reach you, sorry. Try to think positive and deep breathing. I know it sounds weird but it's all you can do for now. These things take time and we have to suffer along the way. In my experience if you are anxious in a consultation they think crank or overactive when you are severely underactive. It always amazes me they let people walk around extremely overactive and do nothing because they don't complain about lots of energy and eating loads and still losing weight. But if you are underactive you must be depressed or making it up because your levels look fine. Keep calm and forge ahead. You will have to fight but do it calmly and firmly. Good luck 👍 👍
Thank you. You talk sense. But I'm not prepared to suffer another NHS endo that doesn't listen or, as in the last case, was about 28 and not experienced with issues. The private one I have now is lovely. And he looks at the whole picture. I will talk to the cardiologist about this gene test though. I hadn't thought to do that, thank you. If he suggests an NHS endo appointment I'm not going to turn it down. But I will keep mine in the background.
I'm not overly stressed about it most of the time. But I'm worn out and my job is hard work, I've been on my feet for hours and my right heal is now throbbing and my legs ache. I have finished for the day and can go home now, but work is all I do. No energy for anything else. I have been stressed today because I am lowering my beta blocker and the phone call and dismissal with the GP (juggled with the phone calls from DPD about changes to parcel collections today) set me off. I don't feel too anxious now. Will test BP and HR when I get home and see what's happening.
Well, to be fair to him I suppose, I didn't have the results of the gene test then. And as usual they insisted on taking bloods when I was at the hospital in the afternoon. All wrong. I do all the bloods I control at or before 9am.
The GP said "as a GP your results are within the reference ranges, set using a wide variety of people. Being in the range your results are classed as normal. I don't think it's your thyroid." I then said, "so what is it?" to which the reply was "I don't know." So I've suffered and changed beyond imagining in the past 7 years and he doesn't know why and won't do any investigation other than a blood test and the referral to the Endo. who say me and discharged me.
Perhaps remind your GP that lab reference intervals are statistically derived, and have a very limited application to an individual who is already ill.
A patient's individual sweet spot within, or outside, a laboratory reference interval occupies a much narrower range of variation.
I did try to talk about this, saying that my T3 level didn't respond to changes in T4 and TSH is all over the place. He had my shedule of neatly annotated results in front of him and had read my better and looked at the gene test. He just said my results were normal and the NHS Endo had agreed (over a year ago now).
I struggle with them on the phone. It stresses me much more than face to face and because I can't read their faces I don't know how to proceed. I think the answer is give up on them and keep going myself. I would just like some validation or assistance from them.
It can be really difficult to get your point across in person or over the phone, if the doctor concerned is intent on not listening to you. Before going down the private medicine or self-treatment routes, perhaps try putting your case in written form? I'd suggest sending a formal letter by recorded delivery and include relevant references with a specific request that the GP take these into account, along with your whole clinical picture.
Do you understand it if I say, I can't be bothered? Because I can't. I've been in dire need of their help for 7 years now. Firstly with menopause symptoms that they didn't even recognise and dismissed so that was down the private route (my current HRT doctor is great though). Then with the thyroid. I've done all they have asked me to do. I have given them copies of every private test result. They have letters from the private endo. and have done what he asked at the time. They have everything they need but they don't have the training to understand hypothyroidism that isn't straight forward. And they aren't interested in learning. That's the sad part.
I'm not rich by any means, but I don't spend my money on much other than trying to get well again so I will just continue. I need to see, or speak to, the private endo who is lovely. He doesn't know about the Dio2 gene test result yet. He will come up with some sort of plan I hope and then write to them telling them what needs to happen.
It's all messed up by me being in atrial fibrillation . They panic at any mention of thyroid when you have that condition going on.
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