Brown's tumour - how long before it disappears after removal of parathyroid gland

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I developed hip pain and was diagnosed with a Browns tumour and had urgent removal of one enlarged parathyroid last Monday. I am on crutches and must not put any weight on my left leg as the hip bone has grown thin and the tumour is pressing on it from within. This feels very scary and I dare hardly move about.

Has anyone else had this tumour and if so how long after the surgery and normalised PTH levels did it take for it to disappear?

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  • Posted

    Hello brown tumor seems very rare I have been operated in march 2015 of a parathyroid cancer with a very high hypercalcemia. In nov2015 I had a scanner wihich showed a tumor on the vertebral column and th IRM confirmed a brown tumor and not metastasias. I have no pain or any symptomas. Last week the IRM showed that the brown tumor had not changed. I have not the IRM text yet. They don't seem to think that it will change but I have very little nformations about that and I have not found any informations over internet. I am interested if you have more.
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    • Posted

      Hi Tana, thank you for replying, I have just joined the FB group Hyperparathyroid UK Action4Change and learned that a brown tumour can take a year to change unfortunatley but good for you if you do not have any symptoms, maybe it is not so large? I was told that the tumour will start to shrink after the parathyroid hormone levels have normalised. I suffer badly from pins and needles and muscle tightness ten days post op. Did you?

       

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  • Posted

    Hi I think the tumur is small happily because it s the vertebral column. They said that even if I have small holes the bone is still strong and i can do what I want sports, house movings .. After one year it seems true but I have stopped aikido. Just the day after the operation I was in hypocalcemia with pins and needles and difficulties to open fingers or to swallow and muscles pains and cramps. For one year I have taken 3 g of calcium and vit D every day. For one week I try to go down to 2 g per day but I am back to hypocalcemia again. I think I will succed this time but I was very high in hypercalcemia before the operation (PTH 972 and calcium 146 or 3.6). I have read that normally it last two weeks. I hope so for you.
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  • Posted

    Willow, really sorry to see you are suffering and evidently worried about the thin hip bone.  I think tana is correct about the pins and needles most likely due to lack of calcium.  Please get a decent calcium.  Really pleased you have joined our FB group.

    Tana as you are taking 3g of calcium a day, sounds very much like the Adcal D3 which the gp surgeries prescribe (2 x 1500mgs).  If this is correct, please change your calcium, Adcal I am sorry to say is rubbish, its calcium carbonate, the worst and cheapest form of calcium.  Also you should be taking Vitamin K2 mark 4 and 7 (7 at least) with that amount of calcium and magnesiium also is very important to take.

    Regards

    Elaine

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    • Posted

      Thank you Elaine! I was also given Adcal D3 so will get a better calcium tablet. Can u recommend something for UK? What does mark 7 mean for Vit K? I am a vegan so I get my calcium from vegetables and nuts. However I am struggling with watery stools and little appetite the last week which makes me think I don't get enough calcium in my body or its not being absorbed in the guts. The scan also showed gallstones so maybe that is the reason as well. Could the digestive problems be related to low calcium?

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    • Posted

      Hi Willow,

      There are several Calcium carbonate (40 percent elemental calcium)

      Calcium citrate (21 percent elemental calcium)

      Calcium gluconate (9 percent elemental calcium)

      Calcium lactate (13 percent elemental calcium)

      Nobody is allowed to post up links on this forum so I would strongly advise you to join our private group on FB - Hyperparathyroid UK Action4Change - I was taking calcium collagen in a really good supplement but I had to stop because my calcium rose.  I was also getting specific supplements from a man who is well known in the U.S. but again because of raised pth and calcium was advised not to take anything with calcium or vitamin D.  I am still in a state of limbo not knowing whether I have an adenoma or not and I have advanced osteoporosis.  Vitamin K2 (not to be confused with K1 which can affect blood thinning) should be Mark 7 but some same Mark 4 is just as important, so the supplement I was on had both.  It apparently helps guide the calcium to the bones rather than to the gut and kidneys etc.  I appreciate you are vegan, I am vegetarian so it can be difficult.  I used to eat many nuts thinking I was doing myself some good but then when I read on those useless Adcal D3 tablets not to eat anything wholegrain for 2 or 3 hours, something like that, I then discovered the ugly world of phytic acid.  It was only because I thought oats were not wholegrain but they are and so started investigating phytic acid (about the only thing the GP knew of!!!!) and apparently nuts are full of it, particularly almonds and this acid binds calcium, so I only eat a few now and dont eat any at the same time as anything with calcium in it.  I dont know if this works or not.  On the Osteoporosis Foundation (U.S.) where many of us Brits are, some people go to extreme lengths by soaking anything with phytates.  I tried it but it is a real pain particularly with nuts.  I always soak my oats overnight but it really is supposed to be done with warm water and that is not possible unless you have the proper equipment which many do in the U.S.   It is a minefield once you start looking.  At the moment I just take magesium (glycinate as the citrate worsened my IBS), Vitamin K mark 7, Boron, bamboo silica extract, B12 and a probiotic.  As I say it is much easier disgusting these things on the FB group where links can be posted up about many things.

      Look forward to seeing you there

      Elaine

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    • Posted

      Sorry, brain fog, I see you have already joined the FB group, I was confusing you with tana33

      Elaine

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    • Posted

      Thanks Elaine, sorry to hear that your calcium is still high :-( . I will post about calcium on FB now so you'll know who I am there :-)
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  • Posted

    Hi Elaine thanks foor your advices. I take calcidose 500 mg (6 per day) and Unalpha (vitD) but I don't know a lot about this. I am not vegetarian but I have lactose intolerance so I should read on other forms of natural calcium. Willowabd Elaine if you hear something about bown tumors I am really interested.
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    • Posted

      hi Tana, I heard from another member that brown tumours can take a year to disappear. Great to hear that you can do sports, and it should just get better as it keeps shrinking!
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  • Posted

    Hi Willow I was operated one year ago but the brown tumor was found six months after by a scanner then a IRM. Does he say if the bone is more frail ?
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    • Posted

      My hip bone is very frail but that is due to the Hyperparathyroidism. It should get stronger after the op. The tumour also shrinks after the operation. What have they told you about it?
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  • Posted

    They said it is a small tumor over T1  (first cervical) but  I can do anything I want. they speak about lip cells that take place of the bone and it could disappear. I have not the text of the last IRM. I will see. At the first scanner thet were not sure if it was metastasias or brown tumor. So I was happy when they confirm one month after about the brown tumor.
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  • Posted

    I have found the following text, with a cancer of parathyroid I think it is seen as primary hyperparathyroidism :

    "To date only four cases of cervical spine involvement have been reported, three of them due to secondary hyperparathyroidism [5], an involvement of axis. The second cervical vertebra involvement has been reported once to our knowledge; and this is the second reported case of brown tumor involving the axis. It is the first case of axis-involvement due to primary hyperparathyroidism, and the second case of cervical spine involvement with primary hyperparathyroidism."

    I am still waiting for the IRM text

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  • Posted

    "Brown tumor is a rare manifestation of hyperparathyroidism, which is more common with secondary than primary hyperparathyroidism. Spine involvement is extremely rare, and thoracic spine may be the most common site of spine involvement. In cervical spine, it can be manifested by pain or neurological symptoms. A high level of PTH may be the only clue when there is no instability or neurological compression. There may be a complete recovery of symptoms, with lesion calcification, and filling can occur after parathyroidectomy with or without medical hormonal management."

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    • Posted

      Thanks Tana, I hope there is a complete recovery, that is what I have been told anyway. Hope yours does to. I am on crutches because of this lesion so I need it to go as soon as possible. Good luck with your recovery.
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