What Now?

Anyone that has read my previous posts will know my haematologist said my symptoms cannot be due to B12 def as the 3 weeks loading dose would have cured all symptoms and my 8 weekly shot will keep on top of it, and my gastro reg said my levels were not low enough to have any symptoms in the first place (despite the symptoms being the trigger for tests that alerted us to b12 def). I have now had numerous blood tests with the neurologist and an MRI and he has said there is wear and tear in my cervical spine (hmmm could be why I keep needing physio for upper back pain) but nothing to suggest anything neurological so he is saying my symptoms are due to insufficient B12 replacement (I was self injecting every other day btw). I have an appointment with the GP on Tuesday as I can't go on with this, the constant fatigue is the worse thing but there is aching muscles, peripheral neuropathy, tingling etc too. The dizziness etc does seem to have resolved. Where do I go from here???????? What do I ask for from the GP?

This is interfering with my studies and my everyday life and I want to at least be able to know what it is. I have just had a week in the lake district, which at one time would have meant hill walking etc (I was a ranger in the peak district at one time) but this was a slow paced break and involved gentle strolls through town, steamer rides across the lakes, sunbathing etc but it has still worn me out. We went with friends but I felt I was often not much fun to be with as I was constantly tired (though I am glad to say our latest night was 22:30 bedtime as we are all getting old ;-) ) I am 45 but feel like I am 90.

13 Replies

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  • Has your thyroid been tested?

  • yes and there is no problem there apparently (I know not always accurate though). There is no way I have an overreactive thyroid as I am always puttting on weight, but underactive could be a possibility but GP says no. No signs of coeliac either but I have gone gluten free.

  • in the world of underactive thyroid "normal" just means within a grossly inflated range. It does sound like you may have underactive. Have you actually had thyroid testing? If yes you should ask your GP surgery for a copy of your test results - ask for a print-out, not just a number - you are entitled to this legally. I would suggest you join the Thyroid UK group and post these results for advice. If you haven't been tested then ask gp to do so - any test should also include ferritin, folate, b12 and vit-d. There are private options if you can't get a full set done and the thyroid group will give you details of these. Good luck.

  • normal is actually to do with statistical distributions of results and derived from formulae. it should capture about 95% of the population but that doesn't necessarily mean that everything is okay because it isn't actually measuring what happens with an individual. Great pity that most medics just seem to have no understanding of what statistics are and mean - I was told last year that at 54 I was 'old' to be going through the menopause - didn't bother to try and explain to the GP concerned what average meant - and 54 might be the upper end of the reference range but that doesn't mean I'm old to be going through the menopause. I worked with one lady who was coming up to 60 and was still having periods.

    May be some day all medics will start treating people as individuals rather than test results.

  • sorry to hear about the wear and tear on the spine - sounds very similar to this case, which also involved damage to vertebrae if I remember correctly.

    pn.bmj.com/content/9/1/37

    fbirder did very kindly make the article available for a while.

    Would be good to follow up on the thyroid angle - and if you aren't a member already might be good to join TUK - some cross over in people but they will know a lot more about interpreting test results.

    Another angle you might want to follow up on, if you haven' already - though you would need to do it privately - would be MTHFR and may be getting one of the genetic profiles done - not something I've done yet - just so you know if there are any methylation problems that might be complicating things.

  • Ferritin 14 on 23/06/15 then 70 on 25/01/16 (while on ferrous fumarate)

    Folate 2.7 on 23/06/15 then >24.4 on 11/11/15 (I am on 5mg folic acid)

    B12 133 on 23/06/16 then 1252 on 11/11/15 (on 8 weekly injections)

    Vit d 48.7 on 12/08/15 (I was put on it d but purchase a higher dose of 5000iu without fillers)

    TSH 2 on 23/06/15 then 1.8 on 25/01/16 (according to my trust 0.2-5.5 is normal).

    I will look at the thyroid group too and will request Tsh again (the lab have already refused to do a full thyroid screen so will need to go private for that).

  • Most people feel best with TSH around 1, although yours is slightly higher, that on its own should not be enough to cause your reported symptoms unless it is an indication of secondary hypothyroidism (caused by trigger mechanism rather than thyroid itself). You would really need to have free T3 and free T4 numbers as well along with anti-thyroid anti-bodies for a proper diagnosis. The vits & minerals look reasonable - although D still a bit low. NHS can be reluctant to test anything more than TSH and T4 (T3 is the active form, converted from T4) with even some labs refusing to test if TSH looks like yours.

    I had private tests done to fill out the minimum NHS picture. They aren't too badly priced so if your GP is reluctant that is an alternative. I used Blue Horizon but there are other alternatives. Good luck

  • Will look at mthfr privately too

  • hope you manage to get to the bottom of things

  • I have an occy health appointment on 16th August - I already have adjustments made (not allowed 3 long (12.5hr) consecutive shifts due to foot pain). I have a letter from my podiatrist stating I need to wear trainers but nothing for my fatigue etc as all tests have resulted in a blank. My podiatrist told me my feet problems are due to my deficiencies. I need to make it clear to them that there is something wrong but how can I without evidence?

  • I am so sorry you are struggling, Sleeypus. I know exactly what you are talking about except that now, for me this condition only occasionally recurs.

    Would it be possibly for you to find a Nutritionalist GP? I think that's what they are called in the UK. In Australia, they are called Functional GPs. I had much success with this doctor as he was able to test (hair and urine analysis) and eliminate all sorts of things and over a 6 month period prescribed a number of supplements which have made a significant difference to my body's chemistry.

    In no way am I suggesting you should not pursue the traditional line of medicine; just that sometimes a 'big' picture helps. When my Gastroenterologist said to return when I'd developed diabetes or thyroid disease, I was prompted to ask my GP for a referral to a specialist to help sort my B12 and digestion etc. She said there is no such person so suggested a FGP.

    Hope this helps. Take care and have faith that you will sort it out. Good luck.

  • Not heard of them but I will certainly try to find one. Maybe a dietitian will do the same (or maybe they are one and the same). My mum's dietitian takes all her conditions into account and considers them holistically, instead of dealing with individual conditions. All medical staff should take a holistic approach.

  • No, I don't think a dietitian will do the trick. I would google something like Holistic Medicine. Naturopaths do something similar but I wanted the reassurance of a medically trained doctor who would treat the whole body. Maybe the dietitian would be able to recommend someone?

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