Optimal levels - TSH / B12 / folic Acid / 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.

15 Replies

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  • VickyB12,

    Are you taking Levothyroxine?

  • Yes, of course I do, since day one of my diagnosis as having Hashimoto 10 years ago. It is 100 micrograms every day for the last 4 years.

    In Greece, the annual check included T3, T4, FT3 and FT4 ( plus B12 / folate/ ferritin if you had a thorough endocrinologist. That is why I was aware of the possibility of B12 deficiency / pernicious anaemia). Why do they check only TSH in the UK? Are there optimal levels to aim for when you are a Hashimoto patient? For my annual thyroid check last September, I asked the GP to have my FT3 and FT4 levels tested and she gave me a blank look and never got tested.

    Thank you Clutter!

  • VickyB12,

    Just asking! Euthyroid Hashimoto's patients aren't prescribed Levothyroxine until they are hypothyroid which can be years after antibodies are abnormal.

    Most practices test TSH and FT4 but FT3 is rarely tested in primary care. You can order private thyroid tests via thyroiduk.org.uk/tuk/testin...

    Most people on Levothyroxine feel well with TSH 1.0 or lower and FT4 in the upper range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP if you ask for a dose increase.

    Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

  • Did I sound awful? I hope my text didn't come across the wrong way. I am sorry and thank you so much for your reply...yes, I have recently started feeling that perhaps the diarrhoea & bloating could be due to gluten intolerance. I told my GP and she dismissed it saying that it doesn't develop out of a sudden...it is like an inborn condition she suggested..not her exact words but she implied that ( once again!) I am making things up! In this forum I saw that Hashis patients feel better if they go GF. I will look into it .... Thank you! x

  • VickyB12,

    A bit sharp :-D

    Your GP is wrong, coeliac disease isn't usually diagnosed until adulthood. GPs are taught zip about nutrition in med school so don't take her word for it.

    Some people are diagnosed with non-coeliac gluten sensitivity so it is worth you trying g-f to see whether diarrhoea and bloating improve and you certainly don't need your GP's permission to try it.

  • One more thing, I have the blod tests in the morning after having taken Levothyroxine. Is this a good practice? In Greece, I was told to have the test early in the morning ( 8 - 9 am) and take the pill afterwards. But here they explained that it is of no significance whether I have taken the pill or not! So confused!

  • VickyB12,

    Levothyroxine can peak in the blood for up to 6-8 hours and may give a false high T4 reading so you should take Levothyroxine after your blood test. TSH is highest early in the morning and drops after eating and drinking so early morning and fasting (water only) tests are recommended too.

  • ???? I can't believe 2 GPs and a nurse confirmed it doesn't matter and this is not a fasting blood test. Thank you Clutter!

  • VickyB12,

    It doesn't have to be fasting test or early morning testing but these can help someone borderline get a diagnosis and may help patients get a dose increase or avoid a dose reduction.

  • I think they don't change the dose if it is within the normal reference range.

  • VickyB12,

    Normal ref ranges are very broad. Where in range the results are is important. Most people will feel rubbish with TSH 5.0 but fine with TSH 1.0 and both may be within normal range.

  • that is what I thought but the GP told me that it doesn't matter and if I am not feeling well, there must be another reason , implying that everything was in my head and but they never investigated it. I have also put on weight and they suggested that I probably eat too much! No way they said it is linked to thyroid because my TSH is normal. But it is T3 or T4 that is linked to putting on weight? How can they tell without knowing the levels? I have had such a lousy year, I have been in pain and struggling to cope since last January. Thank you so much for your support today. x

  • VickyB,

    Now what makes me really cross is doctor's saying "it's not your thyroid and there must be another reason for symptoms" but they don't investigate what that reason or reasons may be :x

    Generally low T3 will probably cause weight gain but I was losing weight when T3 dropped below range,

  • On the B12. I need my B12 to be level with the folate. I need the high side of high range, even ovver the line since I am aan under methylator and absorb next to nothing. Ugh.

    You may be very aware, but just in case, there are different types and some don't absorb one and do well on another.

    First, some things mess up your absorption like antacids, Metformin, ibuprophen, the later screwing with auto immune system too.

    1. Methylcobalamin B12. Absorption needs to be very functional, glutathione is good with this for some. And that is a task in itself, imo.

    2. Hydroxocobalamin B12. sometimes better absorbed or tolerated.

    3. Adenosylcobalamin B12.

    4. Cyanocobalamin B12. Synthetic, I don't use synthetics.

    I prefer the sublingual tablets. I also get some in raw B complex vitamins and in combination B complex capsules. But I prefer to pulse my folate / B12 dose by taking together every other day. And keeping on the high side of the high range, when they warn me that I am over the line I think cool, this is very good and I feel very good.

    On topic of folate. Avoid folic acid, these are in conflict in many ways. Good folate foods and a folate tablet.

  • Thank you so much for your help!

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