Piller to post: I have a 18 year history of... - Thyroid UK

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reelingenious profile image
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I have a 18 year history of recurring bouts of fatigue associated with aches, paricularly in my "weak" points, i.e., back and neck; a tight feeling at the front of my neck, husky voice, increased mucus, feeling cold, then overheated at night.

My last blood test (4/10/07) showed TSH @ 1.81 mu/L. I always know when these bouts are starting because my neck stiffens up, all round, more than usual, voice drops, I have to put on extra layers of clothes.

PeriodicallyRecurring ME is the GP's diagnosis.

Any other thoughts?

Allan

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reelingenious profile image
reelingenious
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Muffy profile image
Muffy

WHat are your FT4 results?

reelingenious profile image
reelingenious in reply toMuffy

The bllod test I mentioned above made no reference to FT4, loads of other initials and numbers though. but under the "thyroid function" only stimulating harmone was mentioned. Worth pointing out that between these episodes I am fit and healthy.

RedApple profile image
RedAppleAdministrator

I recognise the symptoms you describe. Fluctuating thyroid output certainly could be the cause. If you haven't had a thyroid test since 2007, then get thee hence to your GP for one today! Ideally, an FT4 as well as the usual TSH, plus a thyroid antibody test to see if there could be an autoimmune cause.

If your TSH comes back in range again and you don't actually get the FT4 and antibody tests done through your GP, then you could try asking for a referral to an endocrinologist for 'a second opinion'. There has to be a cause for these episodes and simply dismissing them as ME instead of investigating further is all too common it seems.

reelingenious profile image
reelingenious in reply toRedApple

What is FT4?

My GP won't like it!! I was referred, at my insistance, and whether there was something in the referral letter, I don't know, but the endocrinologist hardly looked at me, his comment was "you don't look like a thyroid candidate!" And that was it!

shaws profile image
shawsAdministrator in reply toRedApple

You are certainly better off without this endocrinologist. Ask if you can you be referred to another hospital. I have copied this from Answers.com:-

A doctor orders a free T4 blood test (or FT4) to see if your thyroid gland is working properly. The "free" part refers to released thyroxine in your system.

The free T4 part actually means it is only measuring the unbound T4 (which is usable) the free T4 blood test is better than just the T4, you need to know how much free T4 (unbound and usable) hormone there is in your body to help determine whether you are suffering from thyroid disease.

Read more: wiki.answers.com/Q/What_is_...

reelingenious profile image
reelingenious in reply toRedApple

Does any one know a good endocrinologist? I would go privately, partly so I'm not on the conveyor belt and partly to save the hassle.

LouiseRoberts profile image
LouiseRoberts in reply toRedApple

Have you checked out the 'Hospital Compare' section of the website for your area? You may find that someone has rated your local endo department.

Louise

xx

reelingenious profile image
reelingenious in reply toRedApple

Never thought of that, will do, thanks.

Al

helvella profile image
helvellaAdministrator in reply toRedApple

Unfortunately it doesn't really help very much if a department has, say, two endos. One good; one not so good. (To be fair, maybe "not so good at thyroid though brilliant at some other endocrine sub-specialty").

Rod

<b>Updated on Jan 23 2011 10:47AM:</b>

And posters are not allowed to identify individual endos.

Nor, in general, do patients have any means of influencing which endo they see.

Rod

reelingenious profile image
reelingenious in reply toRedApple

Have done the suggested search and come to a dead end.

Most of the names I found were in the home counties and Kent! I'm in the north Midlands. I saw reference to 2 good endos, but no indication as to where they were practicing. Any more info along these lines would be greatly appreciated. This whole subject seems an absolute minefield of symptoms and vague diagnosis. Does any one get to grips with it? In 2009 I had a "Buspirone"test, which is where the recurring ME came from, but if the criteria for diagnosing Hypo is flawed, diagnosing ME is similarly vague and, one has to say, convenient! My problems seem to go back to an "episode" of fatigue and prolonged irregular heart beats, (palpitations), around 20 years ago, which put me in hospital. The "guess", at the time, was a viral infection, although nothing showed on the many tests. I am fed up with my life being dictated by such guesses by the people you trust to give you answers.

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