Pernicious Anaemia Society


Saw thyroid specialist today as in my doctors words my thyroid was "dodgy" after lots questions and discussion about my b12 and thyroid she told me that my legs from knees down were fine, good muscles, spacious awareness and feeling etc - this is where I felt I had all my neurological issues however she said the trouble is weakness in my hips!!' Has anyone heard of this before? Do U think this is b12 or thyroid?

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Carolyn: I think a little reserve regarding the advice you are being given is in order. You are entitled to a little clarity. "Dodgy" is not a medical term and means nothing. It is a bit patronising as it assumes that you cannot cope with a proper explanation. A number of points spring out at me:

1 "Weakness in my hips" is another vague term lacking in specificity. If your hips are indeed "weak " - WHY are they weak? An erudite statement of the obvious is not helpful.

2 If you are having problems from the knee down (you do not say what the problems are) it could be a number of things. Firstly - damage in your back (discs) can lead to pain in your legs but not back. Secondly - poor blood circulation to the extremities can cause problems - particularly if you are diabetic. Thirdly - B12 can definitely cause leg problems (Restless Leg Syndrome. Like ants under the skin and cramp)

3 I cannot easily see how a "weakness" in the hips can produce symptoms below the knee.

With respect to B12 - remember that there is an inactive form of B12. Testing for serum B12 tests TOTAL B12. Blood tests for B12 are therefore not a good guide to adequacy. If the medical profession had got this sorted out properly, they would treat to symptoms NOT numbers on paper.

Similarly with thyroid hormone (thyroxine). There is an active and inactive form. T4 is produced by the thyroid gland and is inactive. It is activated by the liver to T3 - the active form. To test adequacy of thyroxine, the doctors test for the hormone TSH (Thyroid Stimulating Hormone produced by the pituitary gland in your brain) if you have insufficient T3 this will rise as the pituitary gland releases more TSH to try to up the amount of T4 produced by the thyroid. Unfortunately this can go wrong too. There is such a thing as "Reverse T3" which can be sensed as ordinary T3 and will not cause a rise in TSH. Reverse T3 is inactive. It is possible therefore to be active T3 deficient and to be pronounced by the doctor to be ok because TSH levels are normal. Trying to get a Reverse T3 test from a GP is problematic to say the least!! Most do not seem to be aware that it exits.

I am sorry that this has become a bit of a biochemistry lesson - but these are issues routinely missed by the medical profession with potentially damaging consequences. In trying to determine what is likely to be going on in your lower legs it would be helpful to know a little bit more about the problems you are having.

I hope this helps.


I have PA and only half a thyroid and Ihave spondylitis in my spine but it's worse in my lower back where my hip joins my spine. This causes nerve damage, along with PA and my legs go numb and I have no feeling in them. I'm reading a lot about PA, Hypothyroidism ect on here but the medical world seem oblivious to what we are going through.

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Paulaw22: Please read my response to Carolyn above re Hypothyroidism. You have a slightly different set of problems. You do not say why you only have half a thyroid. This may be pertinent. PA is an important issue that can spin off into a great number of other conditions that appear unrelated - including thyroid dysfunction. As B12 is needed by the mitochondria (the energy producing organells in every cell in your body) to produce the energy molecule ATP, if B12 is deficient, cellular energy will be low in all cells. This is most noticeable in cells that demand a lot of energy - that is cells that produce stuff like hormones and enzymes. If these are compromised all sorts of weird events can happen. Because enzymes and hormones regulate bodily processes, this manifests as dysregulation of various systems. Because we are all slightly different, the same cause can manifest in different ways in different people. It is - as our American cousins call it - a bit of a crap-shoot. This is where genetic predisposition comes in.

Now consider your spondylitis. There are two possibilities that I can think of. It is reputed to be an autoimmune genetically linked condition. If your immune system regulation is not getting the biochemicals it needs it will not regulate properly. Insufficient dietary magnesium and Vitamin D3 are the usual suspects, but if these are up to snuff, a deficiency in energy in the immune system cells may lead to a loss of control and over-reaction to inflammatory triggers. This theoretically can hit your thyroid, and liver leading to hypothyroidism.

The second possibility is unorthodox. It proceeds on the assumption that there is another issue at play as well as inflammation. If you have extra bone being deposited in your vertebra it will deform your spinal column leading to curvature and the spine becoming inflexible. As this tissue builds up it traps the nerves that exit between the vertebra causing numbness and pain.

There are two types of cell that regulate bone deposition and removal. (Osteoblasts and Osteoclasts respectively). They need to be regulated. There is a protein called Osteocalcin that ferries calcium to the osteobalsts for building and another called Matrix GLA which removes it from osteoclasts. Vitamin K2 is needed to activate osteocalcin.

I cannot tell you what you should do. I can tell you what I would do in your circumstance. I would supplement with D3 (5000mg per day) and Magnesium citrate (Not magnesium oxide. The oxide is cheaper but most of it goes straight through). I would also supplement with vitamin K2. From a dietary standpoint I would go easy on dairy so the calcium/magnesium ratio swung in favour of more magnesium. I would cut out sugar and anything containing it - it is inflammatory. I would DEFINITELY make sure that my PA was under control with plenty of B12 (you cannot overdose B12).

I hope this helps.

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Thanks Johnathan! I have not mentioned, because I thought I'd said enough really, that I grow tumours which I am told have the ability to morph between benign and malignant. Half of my thyroid was removed four years ago due to nodules one which was the size of a tennis ball on the left side of my throat. It blocked my airway and has caused a stenosis of my epiglottis and I lost my voice. I have also had to have a hysterectomy including ovaries and last year had a tumour removed from my left kidney. I now have one in my left leg. I have also had to have my gall bladder removed as this was diseased.

I have also suffered from asthma from a child.

Incidentally, I was only found to have PA after my hysterectomy when my daughter was diagnosed during her nurse training. She had just found a lump in her shin which is going to be investigated.

I'm more worried about her than myself as I would hate her to go through all this.

I was told that a few years ago that some of this may be due to my Mum undergoing treatment for TB whilst she was carrying me. I really don't know but I'm about to have more investigations but my Mother and sister were and is hypothyroid and my mother had asthma as a child which turned to COPD after she had part of her lung removed.

I was very sporty after my diagnosis of asthma, at 12 years old, and never let anything get me down. I had problems conceiving my first child but was fine with my daughter but my son was born lactose intolerance and allergies, psoriasis and asthma but he has got better as he's go older but he had to have a knee operation at 18 and we were told his legs will need to be broken and reset when he gets older but we wouldn't agree to it yet as he is very athletic.

My daughter has the PA, hormone problems and I hope she doesn't get the growths. I'm looking for answers for both my children and myself really.

Thanks again though. Strangely enough I started taking Vit D because my daughters bloods came back deficient and vit tablets with B12 or folic acid because I cannot absorb it and it makes me very sick if I take it.

I'm having another ct in just over a week and seeing the consultants for my breathing and ENT in late October and early November so it really helps to try to help myself feel better and give me questions to ask them.


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