What to do?!

Hi! Just returned from seeing my GP again to review my latest blood results.

My previous results were TSH =3.14. FT4= 9.6 (7-17) b12 212 (150-1000).

My new results were TSH =2.72. FT4= 10.6 (7-17) Folate = 9.12 Ferratin =26 (15-300) and negative for Coeliac.

Despite that I'm still complaining of tiredness, tingling in my arms and legs, a twitching eye for the best part of this year, sluggishness, palpitations, weight gain, and a general "can't be bothered" attitude towards everything, (and much much more!) my GP says that sometimes there are no explanation for some things in life. Earlier this year she did refer me to a Neurologist who prescribed Amitriptyline for the tingling. So as of today she has given me Ferrous Fumarate (210mg) to take, and also to start on the Amitriptyline.

My husband can see how all of this is affecting me, and wants me to have some tests and to see a private doctor to try to resolve this problem. I'm not sure that my blood results are that bad really. He also wants me to change my GP. What do you all think?

13 Replies

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  • There are no explanations? Is your GP blind?

    Your B12 is very low, your ferritin is very low, your TSH is too high for good health, and your FT4 is quite a bit below mid-range. I would guess, if it had been measured, that your FT3 is likely to be low as well.

    Low B12 is almost certainly the cause of your tingling. You could ask your GP to test you for pernicious anaemia (PA). If you do, don't start supplementing B12 beforehand, because it makes it very hard to diagnose PA. I suspect the outcome might be that, since you have had a negative coeliac result and your B12 is over 200 your GP will refuse to do any further testing.

    If you have to self-treat with B12, then buy a high dose methylcobalamin supplement. Jarrow's Formula and Solgar both do one :

    jarrow.com/product/75/Methy...

    solgar.com/SolgarProducts/M...

    I buy the Jarrow product from Amazon myself. Take one a day, and stick it under your tongue, between your teeth and your cheek, or between your upper lip and your teeth, whichever is most comfortable. Don't suck or chew or slurp, try and make it last as long as possible. This should maximise the absorption.

    You also need to take a B Complex along with the high dose B12. Methylated versions of B vitamins are more easily absorbed. I use this one (again from Amazon), but there are others :

    thorne.com/products/dp/basi...

    Please note that vitamin B12 is not poisonous or toxic in any way. You don't need to worry about going over the range for this particular vitamin. If you find that you are getting better on the B12 but that progress is very slow, then you should join the PA Society on HealthUnlocked :

    healthunlocked.com/pasoc

    You may need injections, and I know nothing about sourcing these or how to do it.

  • Your husband is right - change your GP. If you want a sympathetic private doctor email louise.warvill@thyroiduk.org.uk for a list.

    T3 (which is the Active thyroid hormone) is also used by some psychiatrists for their depressed patients. T3 is natural to our bodies if we are hypothyroid and levothyroxine which is prescribed should convert to sufficient T3).

    This is what Thyroiduk.org.uk says about blood test results and you will slightly surprised I think:-

    thyroiduk.org.uk/tuk/testin...

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

    Considering there is no blood test for depression but we can get medication for it, if we have hypothyroidism or hashi's we need thyroid hormones first and foremost as our bodies cannot function without an optimal range. Before blood tests were introduced and doctors told only to diagnose when the TSH is above 10 or some such nonsense we were diagnosed on clinical symptoms alone - were prescribed NDT and appeared to get well.

  • I also note the good info from humanbean and give a link below if you order from Amazon.

    healthunlocked.com/thyroidu...

  • With reference to your ferritin (iron storage), you need to get it up to a minimum of 70 - 90, and preferably you should get it up to mid-range (about 150 or so).

    What dose of ferrous fumarate are you taking, and how many times a day?

    Iron supplements are better absorbed if each tablet is taken with 500 - 1000mg of Vitamin C. This also has the added benefit that Vit C is good for reducing the problem of constipation which happens to many people on iron supplements. You need to take enough vitamin C to make things "comfortable" in the loo. And Vitamin C is very good for your adrenal glands as well. Win-win!

    If you can't tolerate ferrous fumarate there are plenty of other types of iron supplement that can be bought over the counter, so ask for recommendations if necessary. The important thing is how much elemental iron they contain. Too low, and your ferritin levels will never rise.

    I had difficulty getting my ferritin level up. It took me nearly two years. In the end I only succeeded after I went gluten-free. I had a negative coeliac test so I was reluctant to try this. It seemed like a huge hassle and very restricting. But it has worked wonderfully for me. If you do this (and I definitely recommend you give it a try for 3 months), you must do it 100%. You can't cheat if you want to get any benefit. I was lucky and got obvious benefits within a week of giving up gluten. But accidents and mistakes happen, and I do get glutened occasionally. I can tell when its happened now because of the effect on me.

    With respect to iron, it is poisonous in overdose. So regular testing is an absolute essential. I would suggest a first test after 3 months to get an idea of how fast your levels are rising.

  • Regarding amitriptyline for your tingling... Please try supplementing with B12 before you resort to taking the amitriptyline.

    Amitriptyline can be very hard to get off and they cause very unpleasant side effects for some people. I've been on them and although they helped my pain brilliantly, soon after I started I developed a problem with tachycardia (very fast heart rate) that landed me in hospital. There were other factors that could have caused the problem I had (severe iron deficiency), but I blame the amitriptyline for triggering it in the first place.

    Your low B12 is likely to be causing your tingling - it is a known effect of a deficiency. So it makes sense to fix the actual deficiency, not to take something that might (or might not) mask the problem while doing nothing to fix it.

  • You appear to have become my project for the day... :D

    Regarding your twitching eye, you may find this improves with your iron supplementation (the ferrous fumarate).

    Another possible answer is magnesium deficiency - try taking about 300mg of magnesium citrate supplements per day. It makes some people sleepy so it should be taken in the evening.

    There are other forms of magnesium supplementation - epsom salt baths, magnesium oil for spraying on the skin, and no doubt others too. You may prefer these.

    The one to avoid is magnesium citrate - often found in cheap multivitamins - it is very, very hard for your body to absorb and is just a waste of money.

    -----------------------------------

    Edit : The one to avoid is magnesium citrate

    Sorry folks, I had a brain storm when I wrote that. I meant to write "The one to avoid is magnesium oxide".

  • I found eye tics went with 5000iu per day jarrow formulas methyl B12. If I miss some, my eye twitches come back - but it isn't an instant fix.

  • Yes, I'd got the impression from reading various posts on here that it could have multiple causes. I think a general upgrading of vitamin and mineral levels helps a lot of people.

  • I made a mistake in my post above - I've put an edit at the bottom of the post. I wrote that magnesium citrate should be avoided, but what I really meant to say was that magnesium oxide should be avoided.

    I actually take magnesium citrate myself!

  • Good grief! There's certainly no explanation in this life for that degree of ignorance. You need a GP with a clue.

    Your ferritin is really low - needs to be at least 70. Your B12 on last test was rock bottom, which would explain pins and needles etc. Levels below 500 cause neurological symptoms - ideal is about 1000. Your T4 is very low in range (should be in top quarter), which probably means your T3 is even lower. You are undermedicated, and deficient in the vitamins etc they tested.

  • Hi Wales1

    Had tingling/numbness & lots of neuro tests too (avoided operations) & prescribed amitriptyline for almost everything - tingling, tremor, insomnia, to relax muscles (my youngest daughter was prescribed it to to gain weight!!! grr...)

    Have you had Vitamin D tested too? Everything works together and if we're low in one vital mineral we're often low in a few. Vitamin C helps iron work.

    I was also told not to supplement B12 until I had further tests to rule out pernicious anaemia - so had the active B12 test (e.g. £57 from Blue Horizon) more info here....

    b12deficiency.info/b12-test...

    however I did supplement and now use boost spray.

    I agree find another GP, perhaps ask if there's an endocrine specialist at your surgery (usually diabetes 'tho) J :D

  • Your B12 is extremely low in range.

  • Wow! Human bean, Shaws, Angel of the North, Sparerib and Muffy- thank you so much for your input. It helps me a lot, and just reminds me that I'm not going crazy after all!!!😀

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