I recently attended my local hospital's phlebotomy clinic as my GP said he doesn't keep the special phials needed to test for zinc, and that they would probably have to search for them at the hospital as they are specialised and more expensive than the norm.... So I mentioned that to the phlebotomist and she replied that it was nonsense, they have 100's of the things, they've got drawers full of them. She explained that the difference is that they are glass. So no problem, she said, look, here is the correct phial for zinc ...... And duly took my blood.
So how come ,when I rang my GP today, for the results, I was told that there was a note on my file from the practice manager saying that the lab had called them to explain that when taking my bloods they had accidentally overlooked the GP's request for a zinc assay, amongst the others requested, so it hadn't been done .........
The receptionist said it was annoying that the lab hadn't phoned me so I that I knew it hadn't been done, and I thought yes, and it's even more annoying that your practice manager hadn't phoned me either instead of simply making a note on my file.
I'm left thinking why the lab would lie about overlooking the zinc request when it was so obviously not overlooked at all - unless I imagined the conversation with the GP and then the one with the phlebotomist???
Not at all. We were having that "your results are normal - why do I feel so ill then?" conversation, and I showed him my Facebook photo from 2.5 years ago to demonstrate how much hair I had lost in the meantime. He looked a bit shocked and said zinc problems can affect hair so we'll test for that. I'm not convinced it is other than Levo but am open to it being zinc if that's what shows up. You're knowledgeable Clutter, any views?
No, I take zinc because it's codependent with magnesium and that's pretty much all I know. Interesting that it can be related to hair loss.
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I think the real story might be that the lab dropped the phial (it happens more often than you might think!) or left it out on the side, etc., etc. and your GP's been fobbed off with an excuse rather than the truth... You know that your zinc blood test was taken. It just doesn't wash that the lab "overlooked" it.
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Thanks for that insight LilyMay. It would have been more acceptable I suppose, if someone had just owned up to dropping it or whatever befell my blood, as accidents do happen in the best run places.
I have registered my dissatisfaction so it will be interesting to see what happens.
I'm a relative ignoramus when it comes to thyroid (I follow on here as I know I'm susceptible, as I'm at risk of another autoimmune condition) so apologies if I'm stating the obvious ... but, have they checked your iron? My friend's hair loss was terrible, and in her case it was iron deficiency: longer term they found she was a ceoliac.
Hi. Thank you for the suggestion. A recent ferritin test was low end 54 (20 - 250). I haven't had other iron-related since Sep 13 but at that time red blood cell count and packed cell volume were each one below range. Haemoglobin est was low end 127 (120 - 160). I'm not too hot on iron side of things either but as per my answer to Polaris, I'm intending to supplement after my blood tests. So thank you for the pointer to iron.
Thank you for that recommendation Polaris. I am so pleased that it is improving things for you. I am waiting to have bloods taken at the end of June for a whole raft of tests by the India lab recently mentioned here , and am wanting the tests to be a snapshot of me without supplements.Then once I have the results am going to start the relevant ones. So I have put the Biotin on my wish list on a certain online site ( !) so it's not forgotten. Again thank you, and let us know how it goes.
No wonder you want to rant. I'm just back from my ( what felt pretty pointless) endo visit.
Dr - 'We haven't seen you for a while' -
Me- 'No you lost me on the system' (should have been seen end Dec / beginning Jan)
Dr- 'You must be feeling well then'
Me - 'Well I wasn't feeling well in March when I went to the doctor, palpitations again - thought I might be relapsing, then my blood pressure was so high I got an extra pill and my cholesterol is now very high too'
Me - 'I also see my TSH has gone up' ( was 0.58 - was 1.4 at the beginning of March - could be anything now) ' could that be why my BP and cholesterol have increased?'
Dr - ' No it isn't high.
Me - ' I know it is within the range but I always felt better when it was under 1'
Dr - 'No it is fine where it is.
Me - ' could it being slightly higher be the reason for my BP and cholesterol being raised. When my TSH was really low so was my BP and cholesterol.
Dr - 'No thyroid has nothing to do with BP or cholesterol, people with Graves tend to have high blood pressure and cholesterol'
Me - 'My eyes feel dreadful, dry, but water, gritty, feel like they are being sucked into the sockets, blurred vision. I wondered if it might be mild TED?
Dr - 'No, once your thyroid is under control you can't get TED'
Me - ' Can you tell me what my T4 was this time?'
Dr - 'Oh we didn't do T4 this time'
Me - 'Oh'
Dr - I will request it for next time.
Nice young man but I came out ranting to my other half that you just can't trust them - they say anything.
Rant over - I just decided if I get nowhere I will just do my own blood tests and treat myself
Feel very free to rant, it is enough to drive you mad, having a conversation/consultation like that........ It would be funny if the implications weren't so dire. Yes I think testing and self-medicating at least puts us in the driving seat.
I attend a big training hospital. Can you just imagine what the future holds for us thyroid sufferers if this is how the next generation of endo's think. Doesn't bear thinking about. Hopefully they are better for people who feel worse than I do not for people like me who feel ok but would like to be tweaked to perfection
Lol - think if I'm going for perfection it will have to be DIY.
Have just been following my other half round the garden grumbling about how I am obviously not an interesting enough case and that 'one size fits all' is probably good enough for the NHS.
No tweaking done for upstarts like me who want individual perfection which is a shame really.
What a waste of time and demonstration of total ignorance of Graves and TED (the Dr., not you ). Will you ask for a referral to an opthalmologist re your eyes?
Hi fruitandnut, Sorry to hear your appt didnt go well at endo it really isnt good enough! My eyes are itchy, gritty dry then streaming too but endo didnt seem concernef about them like you I luckily have no signs of bulging. Must admit mine have impr7 a bit though I do use lacralube at night x
I've got over it all now, I was muttering and cussing about it all evening and my other half pointed out that it is always like that for me. So far out of five appointments only one has been really good, one has been quite good and three have left me feeling kind of short changed and wondering why I bothered - on the other hand compared to what you hear that other people experience I have nothing much to grumble about. Maybe I expect too much. Someone once said to me 'the less I expect, the happier I get'.
No my eyes aren't bulging either - even though they feel awful at times and I don't think the hospital people are interested unless that is happening. I also think it suits them to ignore it unless you are really bad - means its easier for them to offer RAI.
My eyes are so much better when I use drops, I keep handy bottles of HycoSan lying around plus I have Lacrilube if I need something a bit more heavy duty. .
I know - I couldn't believe it - when I was told that I realised I was just wasting my time. I actually said there wasn't really any need to come for a consultation - they could just look at our numbers and send us a letter.
My eyes aren't really that bad as long as I keep using eye drops but I will definitely watch carefully and see how they go. There is absolutely no sign of them bulging so that is good, they are just uncomfortable and I find if I do close work for a while they ache and my vision gets blurred so whatever it is is quite mild.
If RAI is mentioned again - I will find myself a eye specialist - interestingly enough the person I saw this time never mentioned RAI being the option should I relapse the previous two both did but after the last person said that was my next action I visited my GP and said I definitely wasn't wanting / having it and could they refuse to treat me etc if I relapsed (they can't) I want another try on Carbimazole so maybe it wasn't mentioned because that is on my hospital notes as well and I'm labelled as being bolshie.
I had always been very healthy. I've just done a summary of my [nearly] sixty years and apart from the usual childhood illnesses, having my appendix out when I was nine and glandular fever as a teen, I had no major health issues at all between 1972 and 2004. In that time I hardly saw the doc except for pregnancy and contraception.
It all went pear-shaped in 2004. It then took me 5 years to get a referral to an endo and after 4 years and 14 appointments I was discharged without a diagnosis or treatment!
For me, the worst thing about all this is the realisation that you can’t actually rely on the NHS to fix you if you are ill.
I know - depressing thought isn't it. Five years to get to an endo then 14 appointments and no diagnosis/ treatment - how soul destroying. The NHS seems to be ok and even great for some things but definitely not for others. I was like you - I was seldom ill and never really saw my doctor then at 64 wham! Graves!
I know, when you are well you never give ill health a second thought - like you are invincible. Ill health is for other people - or so I always thought - now I know it can happen to anyone
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Why is dealing with the NHS so B****y difficult??
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