I’m only asking, because I’ve just been moved to write quite a stern and angry note to mine, and I’m waiting to hear the outcome.
Briefly, since I was diagnosed with hypo/Hashimoto’s (no thanks to GP: I had to resort to private tests because my TSH was “fine”) I haven’t seen the whites of a GP’s eyes, thanks to Covid. All my conversations about my treatment etc. have been by phone or in writing. I do the writing, the GP phones.
Last week I wrote in to say I thought it might be time I had another blood test (12 months since my last thyroid one). I also noted that I would like vitaminD, B, iron and folate tested, because apart from anything else, I’ve been experiencing some quite bad hair loss, and (although I’ve been supplementing) I’d like to know where my levels are, preferably without again having to resort to paying for private tests. I didn’t say that last bit to the GP, of course.
Anyway, I was contacted with an appointment date, which was this morning. No indication of any detail of said tests. Had bloods taken this morning and asked the nurse what tests had been ordered “Oh, just normal bloods” she said. And cholesterol, TSH…
I don’t know what makes me more angry: the fact that my request was ignored, or the fact that nobody could be bothered to tell me that my request had been ignored, or indeed give me a reason.
I’m absolutely livid. Oh, and before you ask, I also stopped ALL my supplements a week ago in preparation for today’s blood tests.🤬
***UPDATE***
Phone rang as I trudged round Sainsburys and it was the surgery. Somewhat lukewarm apology, but an apology nonetheless, and the doctor has confirmed they’re happy for me to have the tests I requested. Apologised that it wasn’t all done together, and that I have to go back. Even managed to squeeze me in as we are off on holiday next week (remember holidays? No, me neither)
I’m truly gobsmacked, but it’s a small victory that I’ll savour. I would have been pulling my hair out, if I’d had enough left!
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Croixblanches
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It’s so frustrating, not least when I seem to often read posts in different places from people saying “ask your GP to test xyz” or even more frustrating, people saying “I got my GP to test xyz” and yet, consistently, I’m made to feel like a hypochondriac and not even fobbed off…just not even afforded the courtesy of a polite refusal, let alone an explanation. Mind you, since a friend told me her husband’s oncologist told him his vitamin D was too low, adding in the same breath that the NHS doesn’t give vitamin D prescriptions, I shouldn’t be surprised.
In France, lots of my friends are offered Vit.D injections as a preventative measure…..
Bless you for that! I’m 64! 😂 I don’t have a super high opinion of my GP, but I’m guessing even they won’t fall for that. ( mind you….unrelated, but we all need a laugh: my son’s partner went for a midwife appt at 32weeks pregnant and a trainee saw her. “When are you due?” Asked the trainee “May” replied son’s partner. “Is that this year, or next?” Asked trainee…..)
I’m sure vitamin D also protects your bones so you could say you want it checked to be sure low vitamin D isn’t going to cause you problems in the future
I am with you Croixblanches. It’s outrageous that we ask for a yearly test and then they won’t test properly.
I pay for mine. Don’t bother asking and when I present tests (only once have I done this) to get told I’ve wasted my money. Honestly you have to laugh or you’d cry. I accept it’s a national emergency health service now and don’t bother and have no doubt that There are loads who think same.
Don’t be livid. Don’t waste your energy. It won’t make a jot of difference to them. X.
We pay but we get reimbursed. How much depends on our insurance. The public insurance - equivelant of the NSH, le Sécurié Social - pays 75%. On top of that, I have private insurance that makes up the difference.
When I got to the doctor's, I have to pay before leaving. When I go to the lab, I just present my two insurance cards and I don't have to hand over any cash. It's an entirely different system. Also, interestingly, in the evening, I can go back to the lab and they hand me my results!
But, even so, we often have difficulty getting the tests we want. Most doctors don't like testing testing the FT3 because they don't understand the results - and they admit that quite openly. I just say, maybe not, but I can! Last time I asked for nutrient testing, the doctor would only test B12 and ferritin. I asked for iron and he said no, that's the same as ferritin!!! lol I asked for folate and he said no because... I don't hear very well but I think he said because it's only tested when you're anemic. But I could have been wrong. I can't remember his excuse of not testing vit D, but for magnesium he said, no way, it's too expensive! However, one time I wanted my IGF1 tested and he said OK, but you'll have to pay out of pocket. Fine. It can be very confusing at times, what you can have and what you can't.
But, I have to say, I've never been offered vit D injections, nor ever heard of anyone else being offered them. Just little phials of liquid vit D to take every two months. Not a lot of good, I don't think!
In France “they” don’t pay for anything if it’s classed as an ALD ( long-term illness), but that wasn’t my point. My point was that, in France (and everyone has to have health insurance, which covers most things) they tend to practise preventative medicine, and will treat you to stop you getting sicker, rather than not treating you until you ARE sicker! You don’t pay to visit a GP in France, although that’s because you’re insured. And insurance covers most, if not all of the cost of medication. 🙂
The downside (in some respects) is that there’s an awful lot of over prescribing too.
(Full disclosure: I’ve lived in France, too, and still have a home there)
NHS is never going to micro manage everyone’s vitamin levels
The explosion in number of vegetarians or vegans who rarely seem to consider that they will need to self supplement and self test to maintain optimal vitamin levels is a huge and developing problem
We seem to be at cross purposes, perhaps. Or maybe you are inferring that me asking my GP to test my vitamins and iron is unreasonable? Which does surprise me a little insofar as it seems to be a recommendation frequently made here and elsewhere that it’s beneficial, or possibly even necessary to know if we have low levels of any or all of the key vitamins known to have a bearing on our condition. My reference to France is nothing to do with insurance or otherwise. I’m fully aware from first hand experience of how the system works, and I’m not suggesting it’s “better” that here, merely that it’s an example of how elsewhere people (without thyroid problems) are given vitamin supplements as a preventative measure, mostly without having to beg.
As I’m aware that my current hair loss is potentially a side effect of my hypothyroidism, and may perhaps be treated by ensuring my vitamin B, D and iron levels are optimal, and as I’ve spent a long time and a shedload of money on both vitamin supplements and collagen, etc., in an attempt to treat my problem myself, to no avail, I had been hoping that at the very least my GP practice might have done me the courtesy of simply telling me no, or (at a stretch) explaining why it wasn’t considered necessary/important.
It appears I’ve probably been expecting way too much.
Personally I gave up nhs testing about 10 years ago ….complete waste of time and effort
I just give GP copy of FULL thyroid and vitamin private tests at annual review ….plus printed weekly summary of Fitbit activity and average resting heart rate
Of course, it’s nice that some can afford that luxury, but not everyone is so fortunate. It’s because people are prepared to let the NHS get away with it that the NHS does get away with it.
In common with many people, I’ve paid a considerable amount of money in tax and NI contributions towards keeping the NHS afloat, and frankly I don’t see why I should just write that money off. I’m one of the lucky ones who can afford to pay for private tests, but here’s the rub: when I was diagnosed, it came about after I’d been saying for five years that my thyroid was under active, and I kept getting the brush off, so I paid for a full thyroid panel which showed unequivocally that I had hypo/Hashis.
However, when I presented the results to my GP, they then insisted on doing all the tests AGAIN, despite having refused to do them previously…because they wouldn’t accept the private test results. I had pleaded for them to check more than just my TSH, but no “it’s in range, and we won’t do any other tests while that’s the case”
You just couldn’t make it up. But if I’m going to pay for private tests only to have my GP tell me they need to repeat them because they won’t accept the private tests…why would I spend the money if that’s going to happen?
Getting all four vitamin levels tested and supplement to optimal levels will significantly improve symptoms
NHS only tests and treats vitamin deficiencies
Medics just don’t understand the relevance that within range vitamin levels are not same as OPTIMAL
And obviously don’t want to test Ft3 as they are extremely reluctant to prescribe T3….but it’s not absolutely impossible to get T3 on NHS…. Just very difficult
Coeliac test £20 online recommended before cutting gluten completely
The professionals are truly unaware of the stress they cause to patients - first because they seem to have no knowledge of any of the unpleasant symptoms, nor the ability to know how to relieve them.
I have been very fortunate to consult with the last two trained doctors who could diagnose a hypo patient from 40 paces, without blood tests and taking account of clinical symptoms alone.
Due to those two doctors knowing all clinical symptoms and how to relieve them that there were queues of patients who went to see them privately.
For so doing they were 'pursued' by the authorities for restoring patients health and wellbeing. Delighting and relieving patients when they found their symptoms were resolved or resolving.
Doctor Barry Peatfield (deceased now) was a great doctor, concerned about symptoms beng relieved but pursued by the authorities for so doing. So much so that he resigned his licence so that he could still 'advise' patients but couldn't prescribe.
Doctor Gordon Skinner was another - loved by his staff (and patients) who stated everyday was a happy day and lots of laughter during their working day. They all loved working with Dr Skinner and devasted when he died. They have since collated all of their evidence etc and were hoping to publish their scientific evidence.
Dr Skinner also prescribed for Lorraine Cleaver who was on the point of suicide before coming onto this forum and finding Dr Skinner who consulted for a few days in her area every few months. He consulted in Birmingham and Glasgow and his research offices were in Birmingham.
Hi, I have had the same thing, requested blood tests as I had a constant appointment, I stopped vitamins, came back with TSH only, it's so frustrating. My last conversation with the doctor, he said blame the government......so unprofessional and very frustrating. It cost me £85 for a thyroid and antibody test. 🤬🤬🤬🤬
Hi there! same for me 3 week wait for a phone call from a Dr! (Not mine may I add) I was diagnosed with Hypothyroidism in March but really had symptoms about 6 months before! My blood viscosity has been high! Which suggests inflammation! I have low folate as well. After mentioning my dad died of Myeloma ( blood cancer) she wants to examine me but I still had to wait 2 wks to see her! I had my B 12 done and ferritin which are ok but when I asked for Vit D etc she said we don’t do this! So I won’t go on! I feel ya pain 😟 I’m from Devon by the way or is it everywhere?
Have you got raised haematocrit? I recently found out I've had raised haematocrit for quite some time but no GP has raised it with me or apparently investigated why I have this and at the same time, reduced white count and neutrophils. I asked about this here some time ago but received no replies, so interested to hear what your experience has been with this.
I'm in a similar position.I have to "remind" the nurse taking the blood draw to ensure that my T3 is measured along with my TSH and T4 EVERY TIME 😡
I had a blood test for B12 that came back as 322 (lower range 200).
I spoke to the doctor who suggested a retest even though I explained that I got B12 privately and I improved on that and the 322 was soon after a B12 injection.
he responded by saying that he had to follow the guidance!!
I advised him that he didn't have to follow the guidance, he could deviate if there was good reason to and the good reason to was that I improved on injections.
The local CCG guidance actually says that if blood tests conflict with signs and symptoms, to carry out a trial of B12 injections (my paraphrasing).
The CCG guidance also advises that B12 is lowered in patients with auto-immune conditions, which the GP didn't consider.
So I have written a 6 page letter outlining the case law re. guidance and actually repeating the CCGs own guidance re. my circumstances. Plus the British Society for Haematology guidance on Vitamin B12 to boot.
That letter is dropped off today.
I hope this is relevant to you.
Basically, keep asking and writing and complaining.
Hey.👋 Like SlowDragon posits, this is all par for the course. Blood tests are the GP's pick n mix, not ours... 😛😛 and in my experience, they get ticked off if we suggest we know anything at all about our condition. We can get whatever tests we want via private testing, given the means - outrageous but sadly true. That many of us haven't the means due to our poor health and diminished career prospects is our problem. I would be World Queen by now, but for this cr@ppy condition 👑
Have a look here ( I have no commercial relationship, more's the pity ) beautifulbetsy.co.uk/ for something to enhance your tresses whilst yopu're sorting this out; like all wig / topper purchases, ours is considered a necessity with our lifelong auto immune condition and so for completing a VAT exemption form, we don't pay VAT which makes these more affordable.
Welcome to the sh*tshow that is the nhs's unwritten treatment protocol for chronic conditions... 😔
Thanks for the link. I’ll give it a look. I’m hoping my hair will grow back, but just now I can make a thicker ponytail with my chin hairs 😂This, sadly, isn’t my first rodeo. I’ve had conversations about other autoimmune issues with consultants, along the lines of “Yes, it’s me again, presenting with the same condition you assured me would “Go away on its own” seven years ago.”
I’m one of the luckier people, in that generally my symptoms are mild, and I’ve hit a sweet spot where most of the effects I was experiencing are under control. It also means I’ve got enough energy to put up a fight, if fighting is what it takes.
Doesn’t make it right, though, that so many of us must struggle to get what, after all, is pretty basic care.
A small victory but a victory nevertheless so well done!! I know this is negative (sorry but 😊) I wonder how far you’ll get with any out of range results. Obviously I’m hoping there aren’t any though 🤞🏻🤞🏻🤞🏻
Sort of a “least of my worries” moment in some ways. At least I can have a better idea as to what I need to do to supplement and do it myself. I will be interested to see if I’m offered any help, but I’m not hugely optimistic. I’d like the doctors input if my iron is low, though, as it’s been a long standing problem, but for so long that I’m sceptical it’s contributing to my hair loss.
Nope, neither. I don’t eat gluten or dairy, but otherwise have a full, varied and (I like to think) very healthy diet. If you discount the Wine Gums I had yesterday☺️
Oh exactly..all of the above. I think it might be easier to bring some of this to the attention of my GP if I have some results to back me up. I’m lucky in that through a lot of self-help I’ve managed to get much of the gut issue under control, although I’m certain there’s further room for improvement. The issue for me presently is also around the hair loss, though. I’d like to optimise all the relevant vitamin levels in order to see if that improves. Hopefully outside/beyond that the work I’ve put in over the past 12 months on diet has set me on a good path with regard to my overall gut health, but need to keep to that path and tweak what needs tweaking to see if I can improve matters still further. As we all know, it’s not really a “stable” condition we have, and constant tweaking is a feature.
I was told by gastroenterologist to that I should only take a multi vit with iron to raise a dreadful ferritin level. That I shouldn’t take more as I had high serum iron. Whilst I accept majorly supplementing was not the way forward I didn’t think this was the best advice from an educated man either.
My cousin was so anaemic and yet she didn’t know even though they were investigating her symptoms. I know very little but saw her results and was shocked at all of it. Sent her back to dr. She received prescription iron, vit d, upped her levo twice since.
Honestly. I am just never surprised anymore that you can’t get even basic health advice. They really need to start teaching it in schools.
Off soap box now.
At least you know will know what to do with the results 👍🏻 My best wishes with it.
Thanks for the good wishes. It’s a shame that something so innocuous has to be such a struggle to achieve, and that anyone should feel that getting a simple blood test done is a major victory, but part of me wanted to push on for the principle. Hey ho.
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