Hi all... I apologise for my long post and Thank you in advance for your time andhelp! I was diagnosed with Hashimoto 10 years ago while I was living in Greece. A year before I moved to the UK, my endocrinologist alerted me to the fact that my B12 levels were dropping low. I had oral supplements and I was told to always keep in mind my B12 levels. When I moved to the UK in 2011, my B12 was 190 and I had 6 injections and then I received a letter apologising for the inconvenience. They argued that my B12 was low but within range and no treatment was required. Little did I know then and I trusted the GP and the Haematologist.
In the last 5 years, I felt tired most the time, I had migrainous headaches and bouts of diarrhea at night. Last January I had pins and needles, lots of pain in my left arm, & heart palpitations. My B12 was 168 and after a week of having lots of B12 food it went to 190. Folate was 3.5 and Ferritin 48.2. The intrinsic factor came back negative. The GP said I had no problem with my gut absorbing B12 and I need to eat more food with B12. She dismissed my comments of having a healthy diet & not being a vegetarian. She said I shouldn't be cooking beef for too long! now I know that B12 is not destroyed by cooking!
Anyway, at the time, I was thinking that a GP knows best, I started taking oral supplements and eating liver, eggs etc. The neurological symptoms insisted and I was diagnosed with a blood clot in my left arm and they said that the clot pressed on the nerves and that caused all the discomfort. Needless to say, that I got little sleep because I kept waking up because of the numbness in my left arm. I was prescribed Ibuprofen ( for the clot) and Amitriptyline ( for the nerve pain). Four months later and I saw no improvement. Now I know that Ibuprofen affects the B12 absorption. I don’t think the GPs are aware to be honest! One day I came back from work feeling so tired that I went to bed at 5.30 in the evening. And the next morning, I couldn't breathe and my chest was tight and I felt as if I was about to faint, After 10 hours in the A & E, I was told that it was probably a panic attack. No explanation for my symptoms. I got the impression that they were thinking I was a 'naughty' patient worrying about the blood clot & wasting their time & I was psychologically imbalanced. I literally slept for 2 and a half days after my day in A & E! That was when I started thinking that perhaps the B12 was the root of my cause. I almost begged the GP to give me injections. At the time I didn't know anything about Pernicious Anaemia Society or this forum. I was in the NHS hands and I wanted to believe they were doing their best to treat me. After having the B12 shots, I felt so well that it was unbelievable. My left arm was still numb but I could cope with it. My husband said: 'I have my wife back!'. I also felt that I needed more but what could a NHS patient do? A month and a half later, the pain came back and I didn't sleep for 2 nights. Again I didn't say anything because I knew the prescribed treatment was 1 injection every 3 months. I decided to try the B12 patches and liquid iron with B12 & folic acid.
I had blood tests mid October –
TSH: 2.03 B12: 335 Folate 4.4 Ferritin: 53.9
After putting lots of information together, I had a phone appointment with the GP and I argued that I need more injections as I was still subclinical deficient. He reluctantly argued to give me 6 injections as I suggested that this was like a therapeutic trial in order to confirm that my symptoms got better with B12 shots.
I have now completed my B12 loading dose, I wrote a letter to accompany the guidelines and Pernicious Anaemia & B12d documents and know have an appointment to see the doctor on Monday morning....which I am dreading to be honest with you!
Now, my questions: As a Hashimoto patient, what are the optimal levels for TSH, B12, folic acid and ferritin? Are there any credible sources I could quote in order to convince the GP?
At this point, I can't thank Pernicious Anaemia & Radio Oxford enough for the B12 awareness day in September. That is when I realised I am not crazy and there are other people out there feeling exactly as I do... I don't think I would ever have known that I need a more aggressive treatment because of my neurological symptoms. Please organise more B12 awareness events / days.
I will also post this message on the Pernicious Anaemia society thread as I am trying to get information to link Hashimoto with B12 deficiency / Pernicious Anaemia.