I'm not after guidance, I know I need T3. I'm just sharing how badly we are advised, even when we pay privately for it.
Just got my latest Medichecks results back. It's more or less what it often is, but it was the notes from the doctor who checks them that annoyed me today!
TSH dropped a little to 3.35 from March 3.85.
FT4 75% through range
FT3 15.14% through range
Rubbish doctor comment: "Your thyroid stimulating hormone is in the normal range which suggests that your levothyroxine dose is correct.
Both your free thyroxine and T3 are also healthy.
I hope this has been useful to you."
The test was useful, the comment was useless and would put someone off the trail if they knew less about this than most of us on here. Current Levo is 125mcg a day. I can't raise it, even a tiny bit, it makes me feel worse. Tests are always done at the same time and in the same conditions and my dose remains the same, but the results bounce around. This is probably because I have the Dio2 gene issue from one parent. GP refused to even try to understand that.
Rant over. Have a lovely weekend. It might warm up a bit.
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FancyPants54
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I just got my today. I’m gonna turn off the GP notes. They talk bollox. I’m on combined treatment and so my TSH is 0.005. So Ofcourse they said there’s an association with osteoporosis 😩
Maybe instead of turning it off , you should add feedback and send it back as 'corrected bollox'.... seems they could do with the education...... perhaps you could include an invoice for your consultancy fee
Wouldn't it just. I have used Blue Horizon in the past but they have become a lot more expensive recently so I switched to Medichecks. The first (previous) test I had with them I actively ticked the box for a doctors report. My FT3 was 7.84% through the range that time and the doctor report told me I was all good! That's why I thought I'd turned them off this time. However, last time I got a longer missive of rubbish, so perhaps they always say a minimum of something when authorising a result.
I'm going to have to. I've tried before and made a mess of it. Scared myself. I now have atrial fibrillation to deal with, which means all medics try to reduce thyroid meds!!! There are studies that show low FT3 can cause it, but mostly it's caused by high FT3. They never test T3 so how would they know!
I've tried really hard to correct vitamin and mineral deficiencies but that gene test, as I understand it, means I am unlikely to improve things without T3. I'm frankly terrified about how any of us will be able to import medicines next year and going forward, hence trying to make Levo work. But this is it. Some of my results come back with T3 in the 30-45% range on exactly the same dose of Levo. There is no sense to my results at all and it's very hard to run a business like this. I have little active life going on. It's criminal really.
I hear ya on the T3, mine is private. My Endo is at the end of his career and it comes from Germany. I’m scared for my future. My T3 is always 0% through range no matter how high I get my Levo. I don’t know how I got through the last 10yrs
Do you know more now in order to try T3 again? I’ve certainly been on a huge learning curve since joining this site ✊🏻
I hope I do. I was doing OK November '18 through March '19 but the sudden conversion of spasmodic atrial fibrillation to persistent (ie all the time) made me panic and of course that wasn't helped by all the medics I saw at that time telling me I must stop the T3 immediately. I was only taking 12.5 a day and because I'd reduced my Levo by 25mcg at the start my T3 and T4 had actually dropped. They understand nothing. A cardiologist should understand the vital importance of T3 for the heart, but they don't. Well mine doesn't. So having done everything they asked of me and trying an increase in Levo to 150 which makes me feel worse, shot my T4 over range and reduced my T3, I need to go back to introducing T3. I won't drop my Levo dose this time. My T3 is probably out of date now. But I'm going to try it anyway. It's not that out of date.
How we are going to get it in the future I have no idea. Buying from the EU is going to involve customs charges to increase the price even if we can get it. But I can barely walk so I have to try something.
It has suddenly deteriorated this year. It's always been low, but usually higher than this. But in March it was less than 8% through the range. So today this counts as an improvement! I should have a much higher TSH based on these last 2 results. The pituitary can't be working properly.
What a journey!! It’s so frustrating!! To know that you were doing well for a year and the afib starting up. Surely it would have been because you needed to increase not decrease. I swear those so called professionals really have some nerve 🤬
Well at least you’ve got this group to support you and all the knowledge you gained. It’s just so hard to remain confident in our choices being gaslighted all the god damn time.
I was just talking to my sister, we’ve never had the closest relationship but now we’re both nearing 50 something has changed and she now calls me once a week (actually I think it was a benefit of Covid)Anyway i figures. She was Diagnosed hyper when I was diagnosed Hypo and our journeys have been so different but now she’s hypo and really isn’t taking care of herself. However she’s had bloods done yesterday and swears that her Endo in Northern Ireland is the best. I said well if he is put a good word in for me because I need an NHS Endo to approve T3 so I can fight to get it on NHS. It terrifies me to think what going to happen because if Brexit and also my private Endo is long past retirement age and hopefully with a long life ahead of me I’ve got another 30/40yrs if need left. I can’t wait to get my hands on my sisters results as she really hasn’t gained much knowledge which is crazy because she’s head of physio in our home county in NI and should know more!
I was only using T3 from November to start of March so just 4 months. But yes, I probably needed more. And persistent afib isn't as bad as the horrible, violent attacks that came out of nowhere before.
Thyroid issues are definitely hereditary in some circumstances. Your poor sister. To go into this without the knowledge or without the nouse to get the knowledge must be terribly hard.
She was too arrogant, with such a medical background I think she believed what she was being told because they were ‘colleagues’ she put her life in their hands because she’s so awesome at her job herself, why would she not have faith? Although all credit to her she did refuse RAI so at least she had some nouse.
After years of supplements and testing my vitamins are about as good as they are going to get (they drop instantly I stop or reduce) until I can get more T3 into my tank.
I'm seeing a private endo who is lovely but I had to cancel an appointment due to lockdown and took it upon myself to try a couple of other things. Now I have this test result set back I need to get in touch with him again by phone or something. I doubt I'll get T3 from the NHS. I'm in range don't you know!
Same here. At least I know, because until then I had been turning what's left of my brain in circles staring at my list of thyroid blood results trying to make any sense of them at all.
I agree, the DIO2 test result gave me such peace. My GP’s had been gaslighting me for years and I really began to think that I was a hypochondriac. The relief I felt when I got the result was worth it alone.
Doctor wouldn't even read the gene test results paper. Just said he didn't understand what it meant and as far as he was allowed to operate, I was in range.
I read it on a reply this week..... can't remember who though. Endo suggested reduction in levo first to raise TSH into range for 6 months before they would be prepared to offer trial of T3.
I did not realise you could turn off the comments from the clinicians so will be doing it next time I get a blood test with them. They are just following NHS guidelines unfortunately and they know nothing about thyroid disease. One time my high antibodies of 4000 went down to 2500 which they commented on as being good because they had gone lower. The next time they were back up to 4000 strangely enough they didn't comment about them that time because they simply have no idea what they are talking about. I did get a bit angry with their comments because it is bad enough getting them off your own GP without getting them from somewhere that you just want your blood testing. I know more than they do about thyroid disease and I am not even medically trained.
If Medichecks or any other testing company gave doctor reports which didn't follow NHS guidelines I think there would be organisations - professional doctor associations, NICE, Royal Societies - who would kick up a mega-stink, and who would do what they could to take the testing companies to court and do everything they could to close them down.
And we can be sure that the courts would find in favour of the doctors and not the testing companies because those in power stick together. All they need to do is keep reiterating that patients must be protected from "charlatans" who deal in "alternative medicine" and who don't use the same "evidence based medicine" that doctors themselves do.
When doctors feel threatened as a group they don't play nice, they play dirty. The way that Dr Skinner was treated is evidence of that. And what happened to Mary Kidson (Google her name) is also evidence of that. They would have no qualms about putting a testing company out of business.
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