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I am back from the hospital and now have my diagnosis :-(

102 replies

phipps · 15/10/2010 13:45

I still have to have more blood tests done and change some medication but I have fibromyalgia. I am pretty upset though relieved that I have not imagined the symptoms. I guess a day of googling is in order to see how I can manage the symptoms.

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phipps · 16/10/2010 08:03

I am worried for my daughter now as she is hypertonic and has very mobile joints but her muscles are very weak.

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ArthurPewty · 16/10/2010 10:44

This reply has been deleted

Message withdrawn at poster's request.

DBennett · 16/10/2010 11:56

I'll be happy to look at them on your return.

ArthurPewty · 16/10/2010 16:57

This reply has been deleted

Message withdrawn at poster's request.

phipps · 16/10/2010 17:04

DBennett are you male or female?

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spidookly · 16/10/2010 17:07

best of luck with dx phipps, hope things start to improve for you.

DBennett · 16/10/2010 18:25

Hope you found your day useful, I've been to some very good ASD related events and some I was desperate to leave.
Certainly don't rush anything on my account.

Anyways, I had some free time so I checked the webpage you suggested.

It highlights two human studies that find positive results for T3 supplementation in hypothyroidism:

A 1999 paper by Bunevicius.

and, more recently a 2009 paper by Nygarrd.

The first one is included in the systematic reviews of this issue I already linked to.

In case you didn't have a chance to read those, there was some criticism of small sample size, poor choice of wash-out period and less than optimal trial methodology.

But it's a perfectly valid paper.

It is opposed by 8 studies, often better in methodology than the Bunevicius that disagree with it's results.
That's 1223 vs 33 in subject numbers.

Now the reviews do some neat statistical combining to be as sure as we can be of the conclusions.
Which are that T3 appears to have no benefit over Thyroxine only.

I don't get the impression you think I'm a good judge of whether a research paper is good or bad so I won't add a personal opinion on the more recent paper.

I will say it included 59 subjects, unlikely to be able to turn over the weight of numbers against it.

The weight of the evidence does not find a role for T3 in thyroid dysfunction.
I wish it did as it might help the substantial minority who still have symptoms after treatment.

But it doesn't seem to.

ArthurPewty · 16/10/2010 18:49

This reply has been deleted

Message withdrawn at poster's request.

ArthurPewty · 16/10/2010 19:09

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popsycal · 16/10/2010 19:12

not read whole threD BUT seveal of us on here have it,,,,

hugs

GeekyGirl · 16/10/2010 19:28

Phipps - my mum was diagnosed with fibromyalgia - she had fatigue and pain in her neck and shoulders. After a year or two, though, it went away - apparently sometimes it does. A year later she was diagnosed with an underactive thyroid and is now on pills for that.

phipps · 16/10/2010 19:32

I have had the symptoms for over 3 years, just been so wrapped up in other things that I haven't really had time to process it. I still think I have hypothyroidism.

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phipps · 16/10/2010 19:43

I think what I am most upset about is the loss in concentration. I just can't read like I used too as I can't concentrate and focus.Sad

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DBennett · 16/10/2010 19:44

"Bunevicius et al screwed up here"

OK but this is one of the only two human studies which support your opinion that T3 is vital.
Without this there is even less evidence for you to call on.

"If i am stable on 100mcg of T4 but still have sx, you dont REMOVE T4 from my dose to add T3, you add the T3 to the T4 dose."

Isn't this vastly increasing the risk of ending up hyperthyroid?
After all, the balancing the T3 increase with a reduction of T4 is an attempt to match normal hormone ratios.

"And about.com on the issue, lots of good links there on why T3 is of benefit"

That's where I found links to the papers.
The others on the list are rat studies (not a good human model) and lots of commentary from individuals which are pro T3.

This is not evidence.
But some people do listen to it.

So much so that a joint statement by:

The Royal College of Physicians
The Association for Clinical Biochemistry
The Society for Endocrinology
The British Thyroid Association
The British Thyroid Foundation Patient Support Group
The British Society of Paediatric Endocrinology and Diabetes
Royal College of General Practitioners

had to be made to refute this idea.

phipps · 16/10/2010 19:51

DBennett - if you are not going to answer my question will you please do me the courtesy of not arguing on my thread. Thank you.

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ArthurPewty · 16/10/2010 20:07

This reply has been deleted

Message withdrawn at poster's request.

DBennett · 16/10/2010 20:14

I was going to apologise for overlooking your question but having found what it is I'm not going to.

Are you implying women can't understand science?
Or that either genders opinion is less valid to you.
Is that on all issues?
Or just this one?

If you are frustrated by a deviation from where the topic started, I can understand that.

But gender is irrelevant to this topic.

And no, I will not and from now never will answer that question.

Feel free to report me.

DBennett · 16/10/2010 20:16

"As for all those assaociations publishing a statement jointly, hjave you looked to see who funds them / what their motivation for publishing such a statement might be?"

Ah, a suggestion of corruption by those with no evidence to support their claims.

How unfortunate that it so often comes to this.

phipps · 16/10/2010 20:17

Hmm.

I was curious about what sex you were and no it wasn't anything to do with thinking women couldn't understand science Hmm.

And why would I report you?

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Frrrrightattendant · 16/10/2010 20:35

I like both these posters actually - I find them both very intelligent and interesting and I have a hunch they are pretty well respected in their fields...at least, one of them is if I'm right

Phipps I don't know about you but I'd be flattered to have them arguing on my thread! Smile

Sorry you're having trouble btw. I'm not much help I know Sad

phipps · 16/10/2010 20:42

Thanks. I am not flattered though as all I want is help.

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CristinaTheAstonishing · 17/10/2010 07:44

Phipps - if you want help I would suggest you keep going to your GP, it really is the best starting point.

I think you're rude to vet who answers or not on your thread when they're obviously trying to help. It seems you only want to hear wacky suggestions so maybe it's a time waster being on your thread.

Frrrrightattendant · 17/10/2010 07:53

Even medics don't have all the answers Phipps.
They have arguments too. t least they are trying to sort out the very best advice for you. How many other consultants do you have prepared to put in overtime in the cause of your treatment?

There is NEVER a total, guaranteed answer in medicine.

phipps · 17/10/2010 09:07

Rude? What I am not finding helpful is people arguing on my thread, it is distracting from proper information. I have no idea where you get the idea I want wacky suggestions from.

The 2 posters imo are not presenting both sides and having a discussion about it, one of them seems to be deliberately putting the other one down. And, Christina, if you feel you are wasting your time then feel free to not answer.

LD has given me concrete help and a place to go and for that I am very grateful.

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DBennett · 17/10/2010 10:00

"LD has given me concrete help and a place to go and for that I am very grateful."

It would be wrong of me to set myself up as an arbiter on what you find helpful.

But I would like to draw your attention back to my first post which provided a link to the fibromyalgia section of the award winning NHS website.

It's unfortunate you didn't find it helpful.