I've just joined this forum and reading the posts and filled with a mixture of emotions from despair to total frustration at what patients have to go through to get the help they need to feel well. I was diagnosed with an under active thyroid 14 years ago after at least 10 years of trips to and from the doctors with varying symptoms and being told the usual lose some weight, the cold weather will make you feel cold, everyone gets headaches from time to time, of course you would be tired and your hair will fall out you have young children and so on. Finally I went one day with all my symptoms (which at that point were many) all written down and the doctor said it looks like you might have a thyroid problem lets test you for that!
So over the last 14 years my medication has been upped to 100mcg a day, in the meantime I've still had lots of symptoms which resulted in being diagnosed seven years ago with pernicious anaemia, again I think I had this for many years before it was diagnosed. I have my injections every 12 weeks but need them much sooner but haven't been able to persuade the doctor of this. I had an ultra sound scan a couple of years ago that revealed polyps on my thyroid but have been told they are nothing to worry about? I've recently developed more symptoms as follows:
very sore tongue (scalloped along the edges)
fatigue (despite getting 8 hours sleep a night)
heavy eyelids - to the point of me having to prise open my eyes some mornings
olfactory hallucination (smelling something that isn't there in my case smoke)
cold hands and feet
bruising easily from the slightest knock
terrible cramp in my hands and feet
poor concentration and memory fog
sensation of lump in throat
The list goes on but I don't want to bore you, the problem is when I have my blood tested the doctor just tells me it's in the "normal" range. So I'm 54 years old, I've spent 25 years of my life feeling unwell and miserable and have also been overweight for most of that time, just after Christmas I decided that I wouldn't feel like this any more and the only way it would change is if I take control of it, do my research and fight my corner.
So off to the doctor again, more blood tests, turns out I have a vitamin D deficiency now as well as everything else but all other blood "normal", so I asked to be referred to an Endocrinologist in the hope that I might at least get to speak to someone who understands my conditions and how they interact with each other. In the meantime I visited my dentist who referred me to an ENT consultant about my tongue, I went to the appointment this week, very enlightening, he is going to investigate what he calls trauma to my mouth and why it's happening so will do a biopsy but as well as this he says it's clear that I need my B12 injections more often because of the effect it's having on my mouth (I could have hugged him!). So he will recommend to the GP that this happens.
Thank you for taking the time to read this, to be honest it feels good just to write it down and get it out there, I have some questions that I'm hoping someone might be able to help me with:
Can I ask the surgery for the results of a blood test each time I have one and do they have to provide it?
If a consultant recommends an injection more often can the GP say no?
Do you think losing over 60 pounds in weight would affect the dose of thyroxine that I now need?
Does anyone else have experience of scalloped tongue ( I read an article by one consultant in America where he said "scalloped tongue screams under active thyroid")
Is vitamin D deficiency linked to under active thyroid and PA in any way?
Many thanks in anticipation