Being a Hashimoto patient, what are the optimum levels of B12/ folate/ ferritin?

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.

5 Replies

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  • Hello VickyB12... Your experience is very similar to mine. I was diagnosed 11 yrs ago with coeliac disease, hashi s and PA and like you I thought my GP knew best. My b12 level at that time was 69 and I felt dreadful but after two awful years on tablets which obviously did no good at all I was put on 3 monthly injections. I felt marginally better but still not good and then 3 yrs ago thanks to an understanding and new GP I was given monthly injections and some of my symptoms still persisted. I had no choice then I had to start self injecting which I now do weekly and feel much better.

    You have to look after yourself with regard to autoimmune illnesses doctors do not have the time or sometimes the inclination or expertise to help you get well.

    With regard to your question re blood results your optimal TSH should be below 1 for you to feel really well. There is an excellent book by Barry Peatfield I think it is called How to Keep Your Thyroid Healthy, (amazon) this is an excellent reference for info re blood levels, T3 conversion, vitamin/ mineral supplements and diet to support your thyroid. Best wishes, hope you feel well soon.

    I

  • Thank you so much!! this info about the TSH is great.This is what I was told in Greece but here... I don't know.... it seems as GPs practice a different medicine. I was even told that it is OK to have ibuprofen 3 times a day for ever as long as you take them with food. When I told the doctor at the A& E, he was scared that I was taking ibuprofen for 4 months. I will buy the book on Thyroid. It seems as if I will have to 'fight' both TSH and B12 levels!

  • I bought the book on Amazon, if you look at the different prices the cheapest is about £7. Also as you probably already know there is a lot of helpful info on Thyroid UK and you will get a lot of help on here from people who know more than me especially if you put on your blood test results ...with ranges.

  • Please check out the side effects for Amitriptyline it is strange your dr said this was for the nerve pain drugs.com/amitriptyline.html

  • oh Zumbaaaa this is so sweet...thank you so much for your concern. to be fair to her, she did warn me that this is a medicine that is prescribed for depression but now gps prescribe low doses for neuropathy nhs.uk/ipgmedia/national/ar...

    I stopped taking Amitriptyline last May, after the A & E incident, I realised it was not really doing much and I hated going to sleep at 9.30! the only way to be able to function the next day was to take it early in the evening.

    enjoy Sunday!! Vickyx

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