Question about blood tests, medical records, how to approach a 'missing' test and how to knock some heads together

[puncturedbicycle]

Apologies in advance; this is going to be a bit long-winded and only tangentially related to my Hashi's.

I went to my dentist last year with an oddly inflamed upper lip. Inside my lip was sticking to my gums and it was a bit sort of chafed like your skin would be elsewhere if it was rubbing. I found myself pushing it with my tongue to release it and had to drink a lot of water at bedtime when it seemed to be at its worst. On two occasions it swelled up for no apparent reason.

It was like this for about a month and in conjunction with a gynae issue (basically among other things I was getting the gynae version of what was going on in my mouth and no one seemed to know what it was) I thought I should at least ask if the dentist had any ideas.

Dentist suggested Sjogren's and suggested a referral. Because she's private, it cost £65 to be referred to a metropolitan teaching hospital even though it was an nhs referral. In the referral dentist mentioned possible Sjogren's.

I had the appt and the consultant wrote back to her that he was testing, among other things, anti-Ro/SSA and anti-La/SSB. It took over a month and lots of phone calls before they sent the results and it seemed that the Sjogren's issue was laid to rest. Phew, glad that's out of the way, etc.

Time passes.

Now I'm looking at all my blood tests from the last year in preparation to start seeing a new doctor. Mainly I don't want the doc to duplicate any tests I've already had or retread any territory which has already been excluded. I can't find the anti-Ro/anti-La to exclude Sjogren's (or I know that's not how it works but at least to indicate that the tests were negative). Dentist sends me email copies of all results from the consultant. Tests not there.

If I'm 100% honest I'd do anything to avoid getting in touch with this consultant. He is held securely behind so many locked doors that it would drive you mental just trying to get in touch with the secretary. They are completely unhelpful and I feel I've done my time with them already.

Having said that, I do feel that the dentist should finish what they started. Now I'm trying to chivvy along the dentist to find out where the missing test results are and if they were even done in the first place. Dentist's receptionist is saying, 'Hmm, we have rung and consultant needs everything in writing (on paper, not email), you might as well just write and ask for them yourself.' She estimates it may take longer than three months to get any reply from the consultant - ??????

So the brass tacks are:

1) Please tell me who should be doing the dirty work here and don't tell me it's me. Why didn't the dentist note the absence of tests for the very thing she sent me there for? Or did the results come in and were misplaced?

2) What can I do to lay claim to my test results? How is it fair that it may take three months to get them? And everyone is holding their hands up?

3) Any ideas how I can get this done and remain friends with the dentist? I can't bear to alienate them and have to find another dentist.

I'm so cross about this I'm sure it's taking days off my life. xx

[Hidden]

Hi, The chances are that they are in the dentist's building somewhere. I've found in the past that the best way to get action is to rock up in person and make the request. This often does work. I did this after my husband's inquest. The numpty behind the desk said she couldn't give me copies of the transcript of the inquest or its accompanying paperwork, because it was all packed away in the archives and unavailable..............so I just stood there. Strangely, they did then become available but the receptionist had to leave her post and go looking for them. I eventually left the building with copies of everything I wanted. Might be worth a try - the keeper of all your paperwork may just be too bone idle. Good luck. Jane x

[puncturedbicycle in reply to Hidden]

Hi Jane. Thanks for that.

To be fair, my dentist's receptionist has scanned and emailed all correspondence from the consultant. I know this doesn't exclude them having misplaced it, but they seem to be giving me what they have. What is disturbing is that she referred me for Sjogren's and she never noticed that she didn't get the test results - ? And concluded that I didn't have Sjogren's - ? Based on what I don't know.

Or do you mean I should go to the university hospital where the consultant is?

[Hidden in reply to puncturedbicycle]

I think I'd be inclined to follow up all the leads, including the consultant if possible. You shouldn't have to do it, but I've found the only way to make progress in all of this mess is to take charge myself. Basically you are the ONLY person who is truly interested in your life and health - most others are just doing their job, ticking boxes, and hoping you'll go away and make their life easier. Sorry if that sounds cynical, but it's what has been my experience. That's till we came out to a Dr. in the USA that is, where the attitude is COMPLETELY different - they fall over themselves to help. Jane x

[puncturedbicycle in reply to Hidden]

Yes I agree. It's just that they were so awful to deal with and I paid for this blinking referral and I just feel angry and defeated that I now have to chase it up, but you're right of course. I will be away for three months now and I won't be able to chase it up unless I go this week. Because I haven't got enough to do.

And I too have been treated in the States and the compassion and respect make quite a contrast to what we're used to.

If I'm honest Jane I think the ******* just didn't do the tests despite his letter stating his intention to do them. My guess is that he either forgot or he didn't believe there was a problem. xx

[Aurealis]

Perhaps a letter to the consultant? / telephone call to his secretary, telling her when to expect you ...

[puncturedbicycle in reply to Aurealis]

Not a bad idea. 'I'm leaving now. Put the kettle on!'

[Aurealis in reply to puncturedbicycle]