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shit- not sure I can cope with another one

15 replies

cory · 03/12/2009 00:23

Condition that is.

Dd has become increasingly worried about hair loss over the last few weeks and tonight pointed out that she has not only lost a clump of hair but also half her eyebrow on either side. Has also been extremely lethargic and depressed for a long time.

Mentioned this in Childrens Health section and helpful MNer pointed me in direction of hypothyroidism. It all fits! All those niggling little things that we've never been able to fit into her Ehlers Danlos, but thought must belong there somehow because that is the condition we know she has. And there is hypothyroidism in the family too.

Of course it would be a huge relief to have something treatable actually diagnosed. It has got to be better than dd just wanting to harm herself because she can't cope with always being exhausted. So why am I all tearful?

I just don't feel I can cope with another explanation, something that's got to be made to fit.

And tomorrow she has the appointment with the GP who questioned her at length about my parenting and then told her they were not interested in her symptoms, but has now agreed to see us again since she did actually turn out to be anaemic. And to this person I have to tactfully suggest the idea of maybe checking dd's blood for hormone abnormalities. Without coming across as a Munchausen parent who gets obsessive ideas from the Internet.

Would it be very bad if I just packed my bags and sneaked away under the cover of darkness? And how soon do you reckon Interpol would track me down?

Any good vibes, practical suggestions, virtual glasses or handholding much appreciated.

OP posts:
onebatmother · 03/12/2009 00:30

many many good vibes cory. Really sorry you're feeling so low, and want to say (but not quite sure how) that you're allowed to say it's not bloody fair.

Can you just lie and say that a GP friend thought it might be hyperthyroidism - or would that rub her/him up even more the wrong way?

Hope you get some proper sleep.

cory · 03/12/2009 07:39

Thank you, onebat, good vibes much appreciated.

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nooka · 03/12/2009 07:50

Oh dear poor you. If it's any consolation my nephew had to have his remaining testicle removed a short while ago, and my sister was very upset that he was having to go through with an operation, that he would have to have testosterone supplements and also that he would never be able to have children (something that is highly unlikely as he has quite severe learning difficulties as a result of basically uncontrollable epilepsy). However when they did tests they found he had very very low levels of testosterone and needed supplementation in any case, something that his doctors felt might really improve his quality of life (slightly difficult to tell as his epilepsy is quite variable).

So although this might be a blow for you now, and something that feels like yet another thing to cope with, perhaps recognizing and treating it will bring your dd unexpected benefits? I hope things go well with your GP, it doesn't seem right that s/he wasn't sympathetic. Chronic diseases need a really good patient-doctor partnership.

fanjoforthemammaries7850 · 03/12/2009 07:50

SOrry to hear you are going through this, one does seem to have to develop superhuman powers to deal with doctors/relatives sometimes it seems.

cory · 03/12/2009 08:09

Thank you folks.

Am feeling slightly more positive now: I woke up in the small hours and suddenly thought 'what if this is it? what if the medication really works? what would it be like to have a dd who is not constantly exhaused and depressed and gets ill if taken out in anything other than Mediterranean temperatures? could I have that?' And a new world seemed to open up. But with that thought comes the thought of disappointment, and of once again ending up with egg on my face, if the tests show nothing. I have put dd through so many inconclusive tests in 13 years that I am getting wary: I know how doctors react when they see that massive file. (but then again, this might just explain everything, and we'd be in the clear and never need to be suspected again....)

The GP thing is a shame; for some reason our own GP who is very kind and has known dd since a baby was too busy to see us, and we got his new partner. Next time, maybe I could ask to see him?

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chopstheduck · 03/12/2009 08:30

Good luck with the drs, cory. I'd def ask to see the nice dr next time. Our gp is useless too, so I know how you feel - I only deal with the paed now!

I think saying about your cousin is the best idea. Tell the dr your cousin told you to go get it checked out!

Wishing a ton of good vibes your way!

chopstheduck · 03/12/2009 08:32

Also, have you ever considered chronic fatigue syndrome? I'm sure hair loss can be possible with that too.

allaboutme · 03/12/2009 08:33

good luck at the drs!
if you dont get what you want, then make another appt on your way out with the nice gp!

chopstheduck · 03/12/2009 08:33

by the way, I thought this was going to be a preganncy thread

cory · 03/12/2009 14:41

The plot thickens.

Firstly, the tests did not show she was badly anaemic as I got the impression from the reception, but that she was slightly deficient in folic acid.

Secondly, the GP was actually very helpful (must have caught her on a bad day last time), but it turned out she had actually done the thyroid test when she did the other bloods and it was normal. So no help there.

But she agreed the hair loss is worth thinking about and is referring her to a hospital general paed to see if there is anything she might have missed.

I really don't feel I can cope with this, Waiting for month for a referral, with dd struggling and suicidal with exhaustion, and then endless rounds of hospital appointments that probably won't show anything (did a ghastly series 3 years ago for suspected cyclical neutropenia), dd getting more and more tired, and myself more and more established as an overreacting mum.

But I am sure there must be something there and I have to keep going.

A pregnancy thread, chops? Far too old and worn for that sort of thing.

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meltedmarsbars · 03/12/2009 14:51

Chops is not the only one - I too thought you'd been having "special cuddles" !

Hope you can get to the bottom of this. Sounds very stressful for both of you.

chopstheduck · 03/12/2009 14:53

the dr is listening to you though, and the fact that they already tested for thyroid shows it was a valid concern.

Really hope you get some more answers from the paed.

Could you and dd take some time out at the weekend, go see a film or something, have some chill out time together?

laughorcry · 03/12/2009 14:58

This is probably absolute nonsense, but your description sounds like lead poisoning.

A colleague of mine had v similar symptoms - also investigated thyroid problems and constantly came up as slightly anaemic. After endless GP visits (and progressively less subtle hints that it must be a psychological issue) it turned out that the water at her work had a dangerous level of lead in it. The symptoms resolved when she stopped drinking it.

Not sure it is very likely that this is your problem, but was struck by the similarity.

Good luck with it all either way - you sound like you both are putting up with an awful lot.

cory · 03/12/2009 15:33

chopstheduck Thu 03-Dec-09 14:53:40

"Could you and dd take some time out at the weekend, go see a film or something, have some chill out time together?"

Oh Chops, I'd love to, but all she wants to do is sleep.

Last weekend we had visitors and spent a couple of hours wandering around the Xmas market of our nearby cathedral town; got home at 5.30 and dd was so knackered by the experience that she had to be physically hauled out of bed the next morning.

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chopstheduck · 03/12/2009 16:33

poor dd

I do hope you get some answers soon. x

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