So wanting to take charge of my conditions and understand more about what's going on I asked for a copy of my blood test results. The receptionist said she would ask the GP and let me know. At the end of last week the surgery phoned and said the GP wanted to see me about the results. This is despite the fact that another GP at the surgery had already seen me and prescribed Vitamin D tablets. Anyway I duly went along to the appointment although I was worried as it was with one of the doctors that I usually avoid because of his poor bedside manner and lack of sympathy, this was a doctor that three years ago told me that one B12 injection a year would be sufficient to keep me going for a year!
I took my husband along as I have trouble remembering what's been said to me (brain fog) and I wanted moral support just in case. He began by saying that he had been researching my conditions of Pernicious Anaemia and Hypothyroidism over the weekend (that didn't sound good) and he had come to the conclusion that I didn't have PA. He said it is incredibly rare and that he only has 3 patients with it at their surgery. He wanted to know why I thought it was PA and I said that I had been told by other doctors in the past that this is what I have, I've also had numerous tests since they discovered my B12 deficiency 7 years ago. He then went on to say that he also felt I was borderline for hypothyroidism, this is despite that fact that I have been taking medication for over 14 years and have had my blood tested every year and not once has a doctor suggested that I don't have it.
I'm sure you can imagine how I was feeling at this point, I have classic symptoms of hypothyroidism and B12 deficiency, stopping my medication was unthinkable to me.
He went on to say that if he was a robot he would look at my blood test results and stop the levothyroxine and B12 injections as on paper I don't need them, however, he didn't think I would be happy with that and so he was going to continue with them.
I explained (despite the fact that I was shaking at this point) that even if I didn't have PA and I have no reason to suppose I don't, I am taking PPI drugs that inhibit the absorption of B12 and so would still need to have an injection. I asked if he was only taking into account the TSH result and he said yes because the TSH is suppressed then that's fine and that you don't need to consider the T3 or T4. I said that in order to get a holistic view of my conditions then you would need to consider all three parts of the test. His reply was that taking a holistic view of my conditions would need hours of tests and work and if I wanted that then I would have to go privately to get it.
He went on to say that this is the danger with looking up your symptoms online and then fitting them to the conditions that you think you have. This is despite the fact that for both conditions I went to the doctors with my ailments and they told me what was wrong. It's only recently that I've wanted to know more because I had lots of recurring symptoms and felt that doing some research for myself was a good thing.
The upshot of the meeting was that he felt I still wasn't on enough vitamin D and that this would account for a lot the the symptoms that I have so he has given me some liquid vit D to take as well as the tablets I'm on. Also he said I needed some iron as this was borderline so he's given me iron tablets for 8 months.
I am now feeling that he could stop my medication at any point he feels like, although I would question a doctor that continues to medicate you despite thinking that you don't have the conditions you are being medicated for. I also didn't get a copy of the blood test results but have since asked for one again although the receptionist was very short with me I'm hoping they will provide it.
Once I have them I'll post them online so that I can get some help from the community that knows about these things.
I'm due to see an Endocrinologist at the end of March as I requested this a few weeks back so I can get a better picture of what's happening with me.
last month I saw an ENT specialist about problems in my mouth and with my tongue, his diagnosis was: -
1. Traumatic hyperkeratosis left and right cheeks and interior half of tongue
2. Aphthous type ulceration secondary to pernicious anaemia
3. possible oral lichen planus
His letter goes on to say that I have pie crusting, occlusal crimping, keratoses and evidence of parafunctional activity.
I have a biopsy later today to find out more.
Has anyone else had experience of any of the above conditions or can anyone advise me what the biopsy will be like?
Sorry for the long post but I just needed to share that with someone that will understand how it's made me feel.