Hello All
I've just discovered this site and have found it really interesting and at times very sad reading your posts especially about the misdiagnosis, misunderstanding and disregard for how we feel despite the dose of medication that they might deem is sufficient.
I have an under active thyroid which was diagnosed 15 years ago but I believe I had it at least 10 years prior to that but was never picked up at numerous doctors appointments. I took the medication and felt better for a while and then the following symptoms started to emerge over a period of years
daily headaches, tinnitus, loss of memory, confusion, pins and needles in my hands, olfactory hallucination (smelling something that isn't there in my case smoke) problems with my balance, bone achingly exhausted despite getting plenty of sleep, stomach problems, depression
Back and forth to the doctor with them saying my thyroxine was "normal" me still experiencing more and more problems finally a trip to the doctor with me in tears saying I couldn't cope with feeling like this any more she actually said to me “I could be cruel by sending you away to lose some weight but I’ll just do this one last blood test first”, from this it was discovered that I have PA, hooray I thought. I had the loading doses and injections every 12 weeks and began to feel better for a bit then quickly realised that my symptoms begin to return around 8 weeks, of course I've asked many times over the last 7 years for my injection to be more often but have always been told no. So on I struggle, at the end of last year I began to have really bad problems with my memory, daily headaches, a tingling in my tongue that then turned into a sore tongue which is all the time, lack of concentration, terrible fatigue that causes me to fall asleep during the day at work, my olfactory hallucinations were at their worst, the list goes on.
So back to the doctor, this time I made it very clear that I wanted to be referred to an Endocrinologist, I figured it was about time that I took control of what was happening for myself and this meant getting a specialists opinion. At the same time I visited the dentist on a routine visit and mentioned the soreness on my tongue, he arranged for me to see an ENT consultant. The doctor agreed to refer me to an Endocrinologist, appointment at the end of March - can't wait.
The blood test that the doctor wanted shows that I am vitamin D deficient, so I'm now taking medication for that. I saw the ENT consultant on Wednesday this week, he was brilliant he explained that the problems with my tongue are due to mouth trauma and is investigating why this is, however, he also said there are other problems with my mouth that are caused by not having my B12 injections often enough and he is going to recommend to the doctor that I have them every 8 weeks, I could have hugged him I was so happy.
I am now 54 years old, I've felt unwell in one way or another since the birth of my second child who is now 25 years old. I was also overweight for almost all of that time but really struggled to lose any weight until 18 months ago, I believe being overweight was a direct result of all my health issues.
What I would like to say to others who may be in the same position as me is this:
If you have symptoms that make your daily life a misery please push the doctors to find out why, even if you are on what they call the normal dose of something, if you still feel unwell then maybe their idea of normal isn't right for you. How you feel affects your quality of life, don't be like me and spend 25 years feeling unwell and not being able to get the treatment that you need early enough. I look back on those years with real sadness now because I believe that all my health problems could have been resolved earlier, I feel cheated of those years, please don't let this happen to you, fight for what you need.
Hemochromatosis and PA
Possible PA
B12 deficient again?
