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- Posts: 9
- Joined: 18 Mar 2011 16:16
At the appointment I asked what risk I was so Told I was low risk and I felt most of you are much worse than me and maybe I don't want to waste your time.
I have contined to be exhausted, memory loss muscle pain, the list is long. My blood count shot up with Anaresp to 16.7! So I responded well so had to wait until the count came down and now I am on 150 mg once a fortnight and just waiting for my last test results.
I have been having investigations as to why I am so exhausted I fall asleep at work, sleep for 10 hours a night and wake still exhausted. Last week it was found I had a very low cortisol reading of 92 normal is around 250. So I am now going to see a Bio Chemist, and having autoimmune blood tests. I have had an under active thyriod for about 10 years.
Has anyone else had the same issue's?
I hope everyone is feeling ok at the momment.
- Posts: 335
- Joined: 01 Nov 2010 17:54
i can not give advice and can only ponder on why the issue but i do feel for your situation stress and concern i suggest a call to Sophie i feel a conversation with her could ease you a little and she should be able to give you advice on your situation and point you in the right direction
i do hope it is resolved soon and you able to get the answers you are looking for
stay well update us take care Janet
- Posts: 601
- Joined: 01 Dec 2009 21:52
- Location: Essex
It really does sound as if there is something else going on other than MDS to account for your extreme fatigue - especially now your red blood count/ haemoglobin is so much better. Hopefully, you will get an answer when all the tests have been done. Out of interest, have you ever been checked out for Addison's disease - it is a very specific test which has to be done to check out cortisol levels ? I only ask because a friend of mine has it and before she was diagnosed and treated she suffered the same crippling exhaustion as you describe and it does affect cortisol levels. It can also cause thyroid problems. I think you need to be quite insistent on a thorough investigation of this because what you are experiencing is not normal!! Also, if untreated, it is very dangerous so please don't struggle on, thinking you can keep going because that will only make matters worse. Can you ask your GP to speed things up?
HOping you get some answers soon.
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