Routine bloods back: I'm a bit... - Hughes Syndrome A...

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Routine bloods back

Jade profile image
Jade
6 Replies

I'm a bit disappointed as my bloods are back and thyroid is 1.46 so T3 and T4 will not be done. Shame.

My ferritin is still 5 and haemoglobin 11.5. I actually feel as though it's lower so looks like the overall condition is causing my problems.

I am doing a steroid trial this month, I have an 8 day tapered trial. Let's hope it help my new migraines and joint pain, fatigue etc

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Jade profile image
Jade
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Manofmendip profile image
Manofmendip

Hi Jade

Thanks for updating us.

Who manages your APS?

Best wishes.

Dave x

Jade profile image
Jade

Well I see Professor Hughes, it was his idea to try a steroid trial for my new symptoms, which may be age, lupus or sjogrens related.

I started to see him again last year at London Bridge after managing alone for 7 years as my warfarin clinic refused to monitor me. My GPs were happy to leave me to manage.

Jade that seems harsh to leave you to manage on your own. Can I ask what T3 / T4 tests are? I had my thyroid blood results back yesterday and it was 1.26. I was told that was well within range? The nurse didn't have time to go through it so I was going to make a telephone appointment with GP.

Lexi_Img profile image
Lexi_Img

Does anyone have wrist pain?

Thanks

Lexi

Jade profile image
Jade

Lissylou I don't know a lot but I understand T3 and T4 can tell us more about how much thyroxine is circulating in our bodies as opposed to TSH which is a hormone doing the work of stimulating thyroid production. If the TSH is a number above 3.0 or 5.0 depending on which study you read then it shows your body is basically working hard to produce more thyroxine.

I have been tested regularly for about 20 years as I have the symptoms but to no avail.

As for being left alone my hospital clinic refused to see me if I used the machine I bought on Orofessor Hughes advice, so me an my GP decided I could manage

Now with all the threats of warfarin removal from us I am happy to stay in the shadows.

in reply to Jade

Oh I see, sorry I mis-read yoir post thinking that you were totally on your own with no support.

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