Can Anyone Help?

Post here to make contact with others in specific regions of the UK.

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Joined: 18 Mar 2011 16:16

Can Anyone Help?

Post by Tommie » 14 May 2012 21:02

It has been a while since I used the forum, the last time was to ask what was the best way to make the use of appointment time.
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.
Tommie (girl)
Posts: 335
Joined: 01 Nov 2010 17:54

Re: Can Anyone Help?

Post by janetstanford » 14 May 2012 23:36

HI Tommie
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

Re: Can Anyone Help?

Post by chris » 16 May 2012 08:45

Hi Tommee

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.

Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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