Ferritin levels

thank you for your reply and the information that you shared .I am back for the results of the genetic blood testing on the 1st September so will share the results . 

Symptoms experienced (over the past 4 years) prior to body deciding to completely be taken over by Aliens in April have been as follows:

Early menopause at the age of 46(not able to receive HRT)

palpitations for about a year 

pain in hips , inner groin that have worsened over time

low mood 

loss of weight 

lethargy 

awful lower leg and foot cramps 

pain and stiffness in my elbows which increased , then moved to shoulders hips 

loss of muscle strenthgh 

severe headaches /migraine like attacks which would last for days ..

from starting on steroids in April the muscle and bone pain improved by 75% at the same time treated for vit d deficiency .

started to feel better in myself but have now experienced 2 fractures ... In my foot and spine in the last 5 weeks !!!! Osteoporosis has been detected on recent x rays and scans. 

Have a follow up appointment on the 22nd with the rheumatologist to share the results .

it has been a bit of a awful journey , with more pieces of the puzzle that need putting together . It seems that I am unfortunate having a few things going on rather than one condition . 

Thank you again 

Helene 

I have just remembered that I missed the intermittent problems I have had with my urinary tract ..

for the past couple of years I have experienced real discomfort passing urine ... Feels as if there is something blocking not like a typical urine infection at all .

has been ? Kidney stones , kinked ureatha ... But has not been explored further . Anti biotics have helped when the sensation is present for a while and does eventually drag me down and feel very uncomfortable . Urine analysis has shown infection over the past few years .

not sure if this is something that others have experienced but am aware that it has been ongoing for sometime now and I have had a number of reoccurring attacks .

you tend to forget symptoms in isolation ... This period of feeling terrible has made me aware that there has been a number of symptoms on reflection post early menspsuse .

hoping that I haven't waffled on .

take care 

Helene 

I reached my menopause at the age of 47.  When I was referred to London to another consultant he noted that my FSH and LH were high and decided that this was due to reaching menopause than a complication of iron overload called hypogonadotrophic hypogonadism.

I was offered HRT but declined because there is a history of blood clots in my family and I did not want to put myself at risk.  I did try the evorel patches for a month but stopped when I started bleeding.  Did not want to bleed after being period free!

I get palpitations which sometimes cause me to cough as it irritates my chest.  I have had a T2* on my heart which is an MRI scan to measure how much iron is in the heart, an ECG and I wore a heart monitor for a week to see if they could record the palpitations.  Unfortunately, no palpitations occured whilst wearing it.

I get a pain in my groin in the right hand side.  I pulled it some years ago so I put it down to that, but it has never healed.  I have to be very careful that I don't change direction quickly otherwise I am in pain for a while.  I have had to slow my walking pace and running is a no no.  I had to give my treadmill away as everytime I got on it I had to get off of it.

I often get lower leg cramps which are really painful.  I have mentioned this to my doctor but he seemed unconcerned.

I have loss of muscle strength and have had for some time, well before I was diagnosed.  I fell down some steps because my legs just gave way and my doctor referred me to a neurologist.  Several blood tests were taken, a nerve conduction test was carried out (wired up to a machine that sends an electrical signal along nerves) and an examination of my muscles by the neruologist.  I complained about my muscles hurting without having to use them and when I did do something repetitive I tired very quickly and the muscle went tight and I had to stop what I was doing.  My ESR was slightly elevated at the time but not high enough to warrant further investigation.  He decided to monitor me on a six monthly then nine monthly basis.  I think he thought that there was nothing wrong with me.  Then I started to get really bad headaches and a pain behind my eye, my eyelid would droop slightly but not enough to cover the pupil and it felt like something was touching or resting on my eyebrow area.  I was constantly wiping away something that wasn't there.  Eventually, the neurologist sent me for an MRI and this was when (for the second time) that iron infiltration was spotted in my bones.  He then referred me to the haematologist where the long process to diagnosis began.

Still with painful muscles I returned to my doctor and we decided to give prednisolone a try.  All my symptoms disappeared.  I took prednisolone for 18 months and never felt better.  I have been off of it now for 18 months and my muscles have returned to how they were before.

Lots of my symptoms were put down to the menopause and you can have more than one disorder going on at the same time which also makes diagnosis difficult as I did.

Best wishes

Marie

I have been checking out stem cell therapy but fear its costs.

Prednisolone did not bulk up my muscles but it stopped my muscles from hurting.  The tablets gave me a lot more energy as well.  I felt great on them, but of course you have to be weaned off them very slowly otherwise the symptoms come back.  So you spend some time taking a higher dose if the symptoms come back while lowering the dose.  I only had to do that once.

Marie

thanks for your reply. I will get the results back on September 1st, so a bit of a wait....

my liver function test was ok I believe, which is reassuring.

Just a waiting game now.

Helene