Still no luck with gp

help with getting a diagnosis

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Re: Still no luck with gp

Postby PoetFire » Wed Sep 04, 2013 5:28 pm

I can get a sulfuric smell in a car as well, but when the engine is running. A cross between something like rotten egg and burning rubber. It's as if I am reacting to the petrol fumes or circulating air. It's one of the few times I get to smell myself. Not had that problem for a while (don't know why)

You could do the urine test for a fee via smartnutrition but it's overly expensive at £184 (sample is sent to Sheffield Hospital)
http://www.smartnutrition.co.uk/health- ... -syndrome/

The urine test is the 'phenotype' test, where the theory is (supposedly) shown in action
The blood test is the DNA test, which is the genotype test. It looks for fault in the coding that are then predictive of lower FMO3 function. In the UK this can only be done if you get a positive urine test via Sheffield Hospital (the only UK tester)

Some local metabolic specialists now 'see' TMAU patients, so perhaps you could ask to be referred to the nearest metabolic disorder consultant (probably at the main regional hospital)

I am not a big believer in TMAU alone (except if rotten fish is the only odor complaint), thinking its more to do with the 1,000s of sulfides and amines FMO3 probably oxidizes, although in theory trimethylamine should be an excellent biomarker of FMO3 function.
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Re: Still no luck with gp

Postby Suzie » Wed Sep 04, 2013 10:14 pm

Hi Lindsay,

You can get a test done privately through Emma Wells at Smart Nutrition - her details are on this website under Getting Tested section. Cost is £184.

However I would still try to get the test done via your GP or alternatively ask for a referral to Dr Lachmann and he will then arrange the tests for you on the NHS - you'll obviously need to wait longer though.. Are you going back to see the same GP each time? If you are, I would suggest that you book an appointment with a different GP and present your case again - with print outs from this website - Dr Lachmann's tel number etc etc. And make a scene if they don't do anything - tell them how it is impacting on every aspect of your life. And if they still say no, then go and see a different GP or change surgeries. Just don't go away - they will have to do something in the end. Remember that you are more informed about this disorder than most of them are. It's hard work and you have to be really persistant but it will be worth it if it gets you a diagnosis...

Suzie
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Re: Still no luck with gp

Postby LJNLindsay » Thu Sep 05, 2013 12:24 am

@PoetFire,

Goodness, it's all so confusing...

At this stage, I'm not sure that my GP would even bother to refer me to a metabolic specialist. She just doesn't want to know :-(

Mean while; I'm spending money I haven't got (on credit card) buying all sorts of supplements, plus, rather expensive, SebaMed products (cleansing bar, body lotion & shampoo, etc).

Today, in Boots, I also purchased a tiny pot of *Trust* underarm deodorant (£8+) just 'cos I saw it recommended somewhere :-O

Seriously considering trying the low-choline diet at the expense of making myself ill due to vitamin/mineral deficiency, etc. All NOT knowing whether I smell, or whether I have tmau.

My worry about taking the test, & having to pay for it myself is that what if it comes back negative? I know this can happen before actually getting a *final* diagnosis of tmau. I really couldn't afford to pay for numerous test :-(

I just wish my GP, CPN & Psychiatrist could all see the detrimental effect the 'not knowing' is having on my mental health.

Of course, they're all happy to pass it off as a symptom of my body dysmorphia, sigh.

Anyway, thanks so much for your helpful advice.

I'm so glad I came across this forum, & all of you lovely people :-D

Linds
"When No One Else Cares; My Dogs' Still Love Me"
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Re: Still no luck with gp

Postby LJNLindsay » Thu Sep 05, 2013 12:40 am

Suzie wrote:Hi Lindsay,

You can get a test done privately through Emma Wells at Smart Nutrition - her details are on this website under Getting Tested section. Cost is £184.

However I would still try to get the test done via your GP or alternatively ask for a referral to Dr Lachmann and he will then arrange the tests for you on the NHS - you'll obviously need to wait longer though.. Are you going back to see the same GP each time? If you are, I would suggest that you book an appointment with a different GP and present your case again - with print outs from this website - Dr Lachmann's tel number etc etc. And make a scene if they don't do anything - tell them how it is impacting on every aspect of your life. And if they still say no, then go and see a different GP or change surgeries. Just don't go away - they will have to do something in the end. Remember that you are more informed about this disorder than most of them are. It's hard work and you have to be really persistant but it will be worth it if it gets you a diagnosis...

Suzie


Hi Susie,

Thanks so much for your response.

Yes, I'm still seeing the same GP, &, a couple of weeks ago, I even sent her a indepth letter; begging her to reconsider. When I saw her a few days ago, she still refuses to refer me saying that she can't justify the expense on the NHS, & I get the feeling that this is *practice policy* so I very-much doubt that I'd have any luck with any of the other GPs' in our practice :-(

I also asked if she'd at least refer me to a nutritionist but no.

As for printing out info, sadly I'm unable to do that as I'm accessing the internet via my phone & not my pc.

U dunno, it wouldn't be quite-so horrendous if it was just *me* it affects but, living with my elderly parents (75 & 71) I'm constantly asking (my mum, especially) whether I smell, or not. She manages to placate me (for all of 5 mins) before I'm asking again...

Seriously, this is wearing us all down :-(

As I've said before; thank goodness for this forum

Somehow (I dont-quite know) I'm going to have to learn to live with the possibility that others DO find me offensive. It's soul destroying though, isn't it? Even though you know you are clean, & those you live with, know that you are clean, I still get sucked into this belief that I must be dirty, & that I don't have a right to live & enjoy my life :-(

Sorry. That all got rather long-winded, there.

Cheers for the info...

Linds
"When No One Else Cares; My Dogs' Still Love Me"
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Re: Still no luck with gp

Postby Suzie » Thu Sep 05, 2013 7:29 pm

Hi Lindsay

Don't take no for an answer! I suggest you book another appointment with another GP in the practice and present your case to them - I had to see 3 different GPs in my practice before I saw one that really listened and understood my situation and finally referred me - that was still after having to really fight my corner and create a scene.

If they don't want to refer you outside of their area ( PRimary Care Trust) - they usually don't as it costs them more out of their budget - then tell them you are happy to pay the difference in the costs of the referrals. Under NHS 'choose and book system' you as a patient, are entitled to chose which specialist you want to see.

If you have no success then I would change doctors surgeries and register with another practice and try again. Keep calm and be firm - it's hard work but if you want an answer then you have to keep pushing..

Suzie
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Re: Still no luck with gp

Postby LJNLindsay » Thu Sep 05, 2013 11:34 pm

Hi Susie,

Thanks for the response.

I'm due to see a new psychiatrist (just waiting for a date to be confirmed) and I'm going to see if she's anymore sympathetic.

I doubt it but I shall see :roll:

Cheers!

Linds
"When No One Else Cares; My Dogs' Still Love Me"
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Re: Still no luck with gp

Postby Tenacity » Mon Sep 09, 2013 9:07 pm

Hi Linds,

Don't worry, your message wasn't too short at all! I don't think I'd have managed to write so much on a mobile phone. ;)

It seems like you've been talking to a lot of people on here - no wonder you're getting confused!

I've purposely avoided telling you what to do, because it's not really up to me. It looks like people on here have given you loads of really useful information about where to go for tests, but ultimately it is up to you to decide what to do with it. It's also up to you to say what the problem is. People on any message board will ultimately see their experiences in yours, but no two people are the same.

You may have already done this, but had you thought about posting on a BDD, OCD or social anxiety message board about ORS to see if you can find other people on there who've been through what you have? I had a quick look for a couple, but no doubt there are more - probably some that are more active than this.
http://www.socialanxietysupport.com/forum/f33/
http://www.psychforums.com/body-dysmorphic-disorder

That way you can chat to both groups of people (us and them) and decide for yourself which sets of experiences most closely match what you're going through.

You seem to be asking for reassurance about a couple of things (sorry if I've misread that). To answer your questions to the best of my abilities:

-You are right that it's very unusual for somebody with TMAU to be able to eat eggs and fish and chips etc. However, there are exceptions and everybody is different. People with transient symptoms and stress triggers, etc, may be able to get away with it. As you say your suspected trigger is your period, I would say that if you can get away with eating eggs and fish on your period, you probably do not have TMAU.

-You are right that a lot of people have to get multiple tests sent off to get their positive result. However, that is usually because the doctor who has ordered the test doesn't really understand what they're testing, or the person in question is unaware of their particular triggers. If you do a 24-hour choline load test on your period, you should not have a problem. If you are unable to get a 24-hour test done, simply eating choline-rich foods for 24 hours before the test and, again, doing the test around the time of your period should give you an accurate result. If the test is borderline by all means get it done again. However, if your levels are well within the normal range in your case I would try to accept the results and move on.

You have mentioned doing the low choline diet on your own. That's fine if it's something you feel you need to do. There are a couple of things I would want to think about in your situation, though. Firstly, if you have no friends or family who are able to smell TMA on you, then how will you know if the diet is working? Also, if you have BDD will you be able to cope with any adverse effects on your appearance? These should not really be an issue if you're working with a dietician, but existing cosmetic problems can be made worse by a radical change in diet. I have mild male pattern hair loss (which is particularly crap since I'm a woman!!) and that was made worse by reducing the amount of iron and zinc I was naturally consuming when I began eating low choline foods. Other people have reported skin problems or dramatic weight loss resulting in loose skin. They're not a big deal for most of us, but could be a massive blow to somebody with a confirmed diagnosis of BDD.

Again, I don't want to tell you what to do, but if you really want to try the diet, perhaps you could at least consider only doing it around your period and eating normally for the rest of the time? Or perhaps even waiting until you have managed to see a dietician?

I'm glad you're getting so much support, anyway. I hope your new psychiatrist is nice. At the risk of bombarding you with even more suggestions and information, had you thought of trying Cognitive Analytical Therapy (CAT)? It is available on the NHS in London (I think), but I've no idea if you can get it in your area. It's a good alternative to CBT when that's not working, as it helps you understand the root cause of your problems. Just a thought.

Anyway, I've written an absolute essay. No need to reply if you don't want to!

Like I say, please do take what people say here (including me!) as suggestions only. It's important to any kind of illness - physical or mental - to take responsibility for your own wellbeing.

Please don't feel you have to justify your presence on this board. If you feel that being here is helping, that's more than good enough for me!

Good luck with everything & in the meantime treat yourself with kindness...

Tx
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Re: Still no luck with gp

Postby LJNLindsay » Tue Sep 10, 2013 12:14 am

Hi T,

Thank you so much for taking the time, & trouble to respond in the way that you did. I am so grateful.

Personally, my instinct tells me that I don't have tmau, but this constant paranoia is making my depression, anxiety & BDD almost unbearable. I hate not knowing whether I do, or ever have, suffered with unpleasant B.O. It's like I have this constant bickering going on in my head; one side believing that every look/action/sniff from others is confirmation yet, at the same time, the other part of my head is in complete denial.

I dunno. My GP doesn't know what to do with me. Nor do our local mental health team. That said, my CPN is looking into the possibility of hypnosis to see if that may be helpful in changing these destructive thought patterns I have.

All in all, I'm tired of hiding away from life &, up until now, *my* coping strategy has been avoidance. Hence living 7 years of my life as a recluse. I thought it was the best way to cope but, quite frankly, I think I've just made things a lot worse for myself in the long-run.

I just find it sooooo frustrating; *knowing* that I am clean. My folks knowing that I'm clean, yet I still trudge thru my day thinking, & feeling, like I disgust people :-(

Crazy. I know.

As yet, I've still not received an appointment with the new psych, though I hope it comes thru soon.

As for the other forums you mentioned, although I haven't actually posted on any, I have frequented ORS-type forums & I must admit that I'm leaning more toward ORS rather than tmau. That said, that little voice in my head tells, me that I'm in denial about having tmau & I'm therefore using ORS as an excuse.

I wholeheartedly agree with what you said about the low-choline diet, & the fact that there is no way I could know if it was working seeing as my parents, siblings, etc can't smell anything anyway!

Argh.

As for Cognitive Analytical Therapy (CAT), I haven't heard of that so it might be something to look into, thanks. I may also mention it to my new psychiatrist as & when....

I recently bought a book on Dialectical Behaviour Therapy (DBT) ((it's a workbook)) & so I'm trying to work my way through that. Whatever it is I have, be it tmau, BDD, or ORS, I have to find a way to deal with it, I guess.
Anyway, thanks once again for your thoughts. It really does help having people to talk too. Plus, it gives my poor ol' parents a break from my incessant badgering about my paranoia, etc. Especially my mum, bless her!

I hope that you are in a good place yourself, & that you have people in your life that you can count on.

Bless you...

Linds x
"When No One Else Cares; My Dogs' Still Love Me"
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