PA/Thyroid/Vitamin D deficient

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.

6 Replies

  • Thank you for posting your story Janey. I'm so sorry you have had such a long fight for treatment but so glad you did't give up and think, as so many do, 'the doctor knows best' because in the case of thyroid and B12 most GPs are unwilling to do the research or even follow guidelines on the latest research. It does seem that dentists and pharmacists are often more knowledgeable.

    There seems to be a link with all these autoimmune conditions and deficiencies - five members of our family have these problems. My daughter was only found to be anaemic towards the end of her pregnancy (surgery neglected to inform her) and my granddaughter is beginning to have some problems now. It looks like all these deficiencies are passed down through the maternal line, as pregnancy and breast feeding increase demand on all the vital vitamins and minerals. My mother had rickets as a child and so was very likely B12 deficient too (not much meat in her country before the last war). She was anaemic most of her life and I now realise probably undiagnosed with PA and died in her early fifties of breast and bone cancer.

    In her book, "Vitamin K2 and the Calcium Paradox", Kate Rheaume-Bleue writes of Weston A. Price, a dentist, who first discovered the importance of vitamin K2 and researched tribes all over the world. He discovered in his research that many tribes had perfect teeth and no fillings. He attributed it to their diet and another practice - they would make sure couples about to procreate were set aside special foods to ensure healthy babies. He also goes on to write about how once they moved away, the western diet had a drastic effect on teeth and development generally.

  • Thank you for taking the time to respond, my daughter has B12 deficiency when pregnant (two of the the four pregnancies she has had to have injections) the anaemia seems to go back to normal after but I insist that she gets tested regularly as I think she is more at risk because I have PA. Also my son has vitiligo which is where you lose the pigment in your skin, this is an autoimmune disease so again I think he gets if from me unfortunately. I've had lots of problems with my teeth cracking in recent years which I'm beginning to think may be related to my autoimmune diseases, I'm going to investigate this futher.

    thank you again


  • Sorry to hear this but glad things are now at last being sorted out for you. I very much agree with you. I have lost nearly 3 stone without really even trying since getting my B12 sorted. If anything I eat more now but cut out gluten. I am doing the same exercise I have been for past 3 years so no major loss due to that. Looking back I had been gradually becoming unwell over about 10 years. So many things have started improving on B12, I hardly believe it myself.

  • Thank you for responding, I hope you continue to recover and feel better.

    kind regards


  • Thank you for posting I am feeling pretty much the way you described. I also have my eyes water and hurt like allergies , I am taking zertex and no relief thats strange. My hair loss is so bad each month you can see through my hair. Im overweight but my stomach is so bloated yet I consume 1300 to 1400 calories so I cant loose weight.but not being able to function mentally I dont look foward to waking up it feels like hell for me.I have more blood 2/18 I need to scream louder its messing with my mind ..

  • The problem is it's hard to fight your corner when you don't feel well and you think that the GP will do the best they can for you but it isn't always the case for a number of reasons. I am very fortunate to have a supportive husband who I am now taking to all my appointments with me as I struggle to remember or take in what the doctors are saying so he will prompt me when I need to remember or will ask the questions that I forget to.

    Up until recently I have always had faith in the nhs system, now I'm thinking that maybe my faith was misplaced and I really don't want to be unwell for the rest of my life so have to find a way to help myself.

    I wish you the best of luck, do keep in touch with how you get on.

    kind regards


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