After thinking my private bloods weren’t going to come back, here they are!
I know that the GP isn’t going to like the numbers that are out of range, particularly that TSH… But it is up from 0.04 on my last test so… 😂
If anyone can advise on what these numbers mean, I would really appreciate it. I’ve got the ‘official’ bloods coming up in the middle of this month so having these gives me the jump a bit!
All I know is, I feel well. I take 125mcg of Levo daily and have done for a number of years now.
Thank you.
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overtherain
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Thank you for your reply and helping me out again!
I’ll do my best. Trying to find good guidelines around consent to treatment but with a happy medium so as not to rub anyone up the wrong way ☹️ I definitely go through phases of thinking I can stand up to them, but then I know how easily I can crumble when actually face to face (or over the phone!)
I tried to mirror the time my test is in a couple of weeks. I took my last dose of Levo around 07:45am the day before the test and fasted for 12 hours before I did the bloods the following morning. I conducted the test itself at 08:15am (was meant to be that little bit earlier but I forgot how fiddly those testing kits can be!)
Unfortunately I’m not on a gluten free diet. I have some gluten free items in there as some things seem to irritate me - I was tested for coeliac disease a long time ago but confirmed negative. Would a shift to entirely gluten free help the antibodies?
I take no vitamin supplements. I’ll get a test ordered for the above to see where I’m at and go from there!
Just don’t have anything eat or drink between waking in the morning before test apart from water. Then you can take levothyroxine immediately after blood test
If GP wants to reduce dose levothyroxine, point out Ft3 is only 40% through range
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
If delaying taking levothyroxine until after blood test, you likely want to not eat or drink anything apart from water before taking levothyroxine
It may (or may not) make a difference to TSH if fasting ….opinions differ
Hi 👋 if you feel well then you don’t have to have the GP tests. 🤷♀️I’m avoiding mine as I too had low TSH from private tests a couple of weeks ago and the advice on here was try to swerve the GP blood test 😂.I don’t know how to find the thread but someone else might.
Also there is definitely guidelines about patient/GP consent. I’ve seen that on here somewhere too 🤦♀️.
If you feel well then don’t have the NHS tests 🤷♀️
I’ve done my best to swerve the tests for a long time. I’ve not had one for years! 😂
Unfortunately every time I go to pick up my prescription it’s a constant worry whether they’re going to let me have it without the review. I’ve been threatened with a drop to weekly and even daily prescriptions before 😞
It’s total madness if you feel well! It’s like they want to try and break something that’s very luckily been fixed (or partly fixed anyway!)
If I ever experienced any adverse symptoms, that’s the point I’d visit the GP. I would’ve thought that would make more sense.
In terms of guidelines, I have found some on consent in general but nothing that points immediately to the reduction/increase of a dose. I’ve got a little folder going with some studies in there so I’m hoping that might help me too. I’ll keep hunting!
Everyone on here has been so helpful, think I’d go a bit mad without this forum and it’s people pulling me back down to Earth!
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
If you DO Have to face your GP (and agree with everyone else, that the best thing is to avoid him/her as long as possible) try putting on your "concerned" face and say that you are worried about your free T3 result not being so great, and that obviously as this is your measure of active thyroid hormone, it's really important FOR YOUR HEALTH that it should be good. You really feel that it would be bad for your health for it to go any lower, so as a "compromise" you are prepared to stay on your current dose rather than get an increase.
The aim of course is to stay on a dose where you're happy x
Hi, fuschia-pink, thanks for your reply and for that tip! That’s brilliant!
Unfortunately it’s been years since my review and I’ve been in positions before where threats have been made to make it very difficult for me to get my prescription 😞 another thing to contend with! I’ve been treading on thin ice I feel and they ramped up the communication recently with texts and phone calls and voicemails.
I think a face to face visit with the GP will be a luxury immediately after my results (I can live in hope, I suppose!) but my plan is to not consent to any dose alteration until I can speak to someone.
A friend of mine with the same condition, at the same surgery, had her dose reduced after a blood test and wasn’t told or consulted. She only found out when she went to collect her prescription. Now that would really rile me up!
it's not possible to totally avoid them.. although delaying tactics can work for a while... and some GP are more 'on it' than others .... but sooner or later a GP will notice that a review hasn't been done for a long while (annual monitoring is recommended in NHS guideline). And they will eventually refuse to process any further repeat prescriptions until they have seen a new blood test.
they bear legal responsibility for what they prescribe .. so they get defensive.. especially with patients who they believe are sailing close to the line of overmedication .
Unfortunately this is the position I seem to be in. Since the pandemic has eased, they’ve really ramped up with the texts and the phone calls to get me in. I know I’ve been treading on thin ice and it seems the time has come to bite the bullet 😞
Now I’m scrambling to get myself in the best and most learned position I can possibly be before I go. It’s something I should have done before, but I think I took feeling well for granted and now it’s caught up with me a bit!
Prior to this diagnosis, I only went to the doctor if I didn’t feel well. If I thought for a second that this medication was damaging me, I’d tell them and expect something to be done. So this to me seems a bit backwards, but I do understand they’re bound to their guidelines.
I'm in the same boat and trying to avoid the NHS but there comes a time when if you don't comply they can threaten to withdraw your repeat prescriptions. I get mine monthly, including Levo. Unlike some I don't get it 3 monthly.
I was in my pharmacy the other day picking up meds and whilst waiting I was looking at my prescription printout and it said not to issue anymore meds until I'd had a medication review. Now its two years since I've had one, not my fault they hadn't done it and actually no one from my surgery phoned me to tell me it was due, it was just luck that I'd noticed it.
Frankly poor on my surgery's part. I get they are busy, so then leave people who aren't complaining well alone.
I feel your pain with this. It’s those ‘little’ (they’re not really little) things that are a huge concern to me. My surgery sounds quite similar to yours.
They didn’t get in touch once through the pandemic - which I understand to a degree - but if it’s SO terrible to live with suppressed numbers and feel well, why wasn’t it also a priority then?
It’s over 10 years since my diagnosis and in that time I’ve mainly had 2 monthly prescriptions - they hands down will not give me 3, and I wonder if that’s because of my ‘lacklustre’ approach to reviews. I’ve had it reduced down to one month before, but those threats of taking it to weekly or even daily do frighten me.
I'm hoping I've dodged a bullet, the surgery senior pharmacist did my review, he was extremely thorough, he didn't mention the Levo, he seemed more concerned about my inhaler technique for asthma not being upto par,
I pointed out no one has ever shown me or told me how to use my inhalers correctly. Not even at my asthma reviews. When you get one for the first time you are just left to get on with it. The asthma nurses are supposed to check you're using your inhalers correctly but apart from doing a peak flow that's it.
I never knew it's meant to be a slow controlled breath in, not a great asthmatic wheeze. I also didn't know most of it ends up on your tongue and teeth unless you do it properly. And holding your breath for ages afterwards isn't necessary either. So I don't need to look like a purple faced balloon.
I learned far more from this lovely pharmacist than I have from doctors or nurses. He's approved all my meds for another year so hoping no eagle eyed member of staff notices I haven't had a blood test since October 😅
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if you feel well then you don’t have to have the GP tests.
That may not be entirely accurate. Like you I have avoided many GP tests but I imagine that eventually they can insist upon testing or they wont give renew prescription until they do.
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