Help please, re hyperparathyriod

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Recent diagnosis, on going

Help, information and someone who is/has gone through the process. Would like to chat about stuff.

 Thanks Kay

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  • Posted

    Hi Kay,

    Your best bet is to join the private group on facebook.  There are nearly 500 members most of whom are going through it or have had the op. Hyperparathyroid UK Action4Change

    Elaine

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  • Posted

    Hello Kay:

    My name is  Shelly and I am an RN -Nurse in the USA.  I have Hashimoto's thyroid disease since 1987.

    I know a lot about the thyroid and parathyroid, albeit I have no Parathyroid problems.  I am open to a Private Message just click my name and send it on clicking on the envelope.  I may be able to help.

    So any questions just ask,

    Shelly

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  • Posted

    Hi Kay, I agree with Elaine, there is a fab group on FB that can help with any questions & advice, I'm 7 weeks post op having had an adenoma removed, it's a long process getting a diagnosis & treatment but worth it in the end, I'm not sure how far you've got with your diagnosis but it can be quite frustrating how long it takes and not all healthcare professionals understand how debilitating this disease can be, please come along to the group, they're a great group all suffering with the same problem, pre & post op peeps are there to help xx
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  • Posted

    Hi Kay, I has hyperthyroidism, Got my tumor removed abpout 3 months ago,Have lots of energy and my calcium levels are back to normal. I went and saw Dr. James Norman from Tampa,Florida learned alot. I can try you what I went though. I had papatations nervousness,tremors, and was tired alot. If you need to talk please feel free to text me.  Marie
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    • Posted

      Hello Maria,

      I thought the name and number familiar.  I am so happy that you have got yourself sorted.  I remember you had so much to contend with as well as breast cancer and advanced osteoporosis as I recall.  I am still doing the waiting game but that's what we do in the U.K.! Had a useless endocrinologist who found a possible adenoma on the ultra sound back in early October but never found this out until early February and in the meantime, other tests which were a waste of time and money including a negative sestamibi, and a ct scan and endoscopy because of the nausea.  I am now on anti depressants, the cure all for everything and of course mask symptoms but have regained the weight I lost over 16lbs which sadly has decided to go south as they say, so look about 5 months pregnant!!

      So as I say I am waiting and possibly go to a surgeon direct but I know that will entail more tests.  I am being particularly careful how I bend etc. as should anyone with advanced osteoporosis.  Anyway, hopefully yours will be reversed now you have had your adenoma removed.  I wonder if Dr Norman told you the size of it.

      Anyway, good luck and hope you feel better each day.

      Take care,

      Elaine

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    • Posted

      Hi Elaine, He said its hormones level were 1668 and its not suppose to be higher than 40, Which means it was old. Yes I have osteoporosis also, mostly on the wrist and neck. It look like it was as big as half of your thumb. The doctors in Ohio couldn't see it,But Dr Norman said he saw it right away. Trying to stay away from osteoporosis medicine, But I might have to take it dont know yet. I hope things go well for you. God bless you, dont give up.  Marie
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    • Posted

      Oh that sounds big, my "possible adenoma" is tiny but am persevering, so little is known by GP's and endocrinologists in the U.K.  Steer clear of the osteoporosis medicine, the makers of fosomax are being sued left right and centre and were forced to add more horrible side effects like dying jaw and hip fracture.  All it does, apart from ripping your stomach out, is to harden old bone which then makes it brittle hence the hip fracture when you are not even doing anything.  You need to google about bisphosphonates.  I have advanced op in my spine and femoral neck but just have to hope that although my calcium and pth readings are high end normal and just over, they might at least stop the OP but I am too old for it to be reversed now.  Problem for me is that I think the OP has been coming on for many years before hpt.

      Glad you are doing okay.

      Elaine

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    • Posted

      Hi Elaine, I was taking fosmax for about a month before the surgery. Dr james Norman says it doesnt work while you have a hyperthyroidism tumor, So I got myself off it,I am glad I did,was starting to ache,and have bone pain. I am not on anything except high calcium pill  with Vitamin D3 with a multivitamin. I hope that does it, cause every pill for ostroporious that has side effects,some more than others. Marie
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    • Posted

      Hi Maria,

      Yes most of the stuff is bisphosphonates that they offer, or a synthetic hormone that can cause blood clots.  The Forteo injections are expensive so they dont like prescribing them, they seem to be the most effective but are only given for two years and then back to the horrible fosamax.  In the u.k. if a man has osteoporosis despite not being elderly, they will not give forteo unless it is paid for privately!!

      Take care,

      Elaine

      By the way I suppose you know that the ppi's like nexium, omeprazole, etc. cause osteoporosis as do the drugs for epilepsy which they now prescribe for pain!

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  • Posted

    Hi Kay, yes i did know about nexium,Itook that along time ago also,and also antidepresses. There always side effects, sometimes better not to take anything.  Maria
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  • Posted

    Hi Kay

    Same here, recent diagnosis and looking for good information. I was admitted to hospital due to high calcium level and was treated immediately with Pamidronate. I've had DXA and nuclear scans. Showing one and a half inch adenoma, also osteoporosis. I was told the adenoma had to be removed, had pre op in February. Due to length of time since 1st dose of the drug, my calcium levels had risen again so have needed 2nd intravenous dose of Pamidronate. I'm worried about the side affects of the drug., especially as I was told removal of the adenoma would cure the Hyperparathyroidism. Information is invaluable to learn how to do forward and get better. I would like to chat to anyone who has experience too.

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    • Posted

      Hi Sue,

      Wow that adenoma sounds huge and why haven't you had it removed already?   I presume you are in the U.K. where there are delays and ignorance amonst the endocrinologists and GP's.  For any information you need, as I said to Kay last week, best to join the private group on Facebook where many are or have been in the same situation.  We have members also from the U.S. and Scandanavia.   Look for Hyperparathyroid UK Action4Change 

      Regards Elaine

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    • Posted

      Was just telling the admin of the aforementioned group and she was quite shocked and asked what hospital you get admitted to.

      Elaine

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    • Posted

      Hi Elaine

      Yes I am in the UK and yes, sadly I'm discovering you are right about delays and ignorance. When I asked my GP for advice as to why I needed a second dose of Pamidronate instead of removing the tumour, she told me she couldn't advise as she knew nothing about the condition. The secretary to the surgeon I am under told me I was being treated as a routine open and I couldn't be operated on before the end of April, by which time I will be poorly again as the more unpleasant symptoms of the hypercalcemia will present again. I noted your advice to Kay and this afternoon I joined the group you mentioned, so thank you. I feel I can't move on and start dealing with the osteoporosis I have developed as a result of my condition until the adenoma is removed. Until then I'm sad to have to play a waiting game with my health and worry about having to take more biphosponate medication. Again thank you for your advice.

      Regards Sue.

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    • Posted

      Dear Sue,

      This sounds absolutely awful for you particularly taking bisphosphonates, when calcium is so high it should be treated as very urgent.  I thought there was another drug to bring calcium down but they all have horrible side effects.  Is there any way you could raise about £5000 as that is approximately what it costs to have it removed privately, around £1000 for the surgeon and £4000 for the "privelege" of using a private hospital.  It probably is more in London.  The only disadvantage is that a lot of the private hospitals do not to intra operative measuring (this is wear the pth is measured whilst you are still under and then if the pth doesnt drop dramatically, it is an indication that there is a second rogue adenoma).  I feel so sorry for you, hope you can hang on.  I feel bad enough with a 8 x 6mm possible adenoma.

      Elaine x

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    • Posted

      What area do you live in and what hospital and surgeon.  We have lists on the group and how many ops they have done.  You dont want one that doesnt know the difference between lymph nodes and adenomas.  This happened to a friend of ours, she is sorted now eventually but at one point went to Florida but the first surgeon in the u.k. has messed up so badly made it impossible to get to the little blighter.

      Take care and come and have a good old moan and get plenty of info from Sallie

      Elaine x

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    • Posted

      Hi Elaine

      I was so disappointed to hear I wasn't likely to be operated on before the end of April. I was hoping to be well on the way to recovery by then and dealing with the unexpected blow of the OP diagnosis. For which I am hoping to deal with naturally. As soon as I had the results from the DXA scan my GP without much discussion of alternatives prescribed alendonic acid which I wasn't comfortable with and strongly want to avoid. The T score in my spine -2.5 and hip is osteopenic.

      The adenoma is 3cm as I'm told its been there for quite some time. As my kidney function was very poor for my age, I was sent to nephrologists to investigate. Following blood tests I was admitted to acute medicine to bring calcium levels down. I believe kidney function is much improved now. I'd had several blood tests and re tests over a period of time until finally alarm bells went off with one of the GP's (and sent me for DXA and Nephrology doctor)

      I have requested to join the FB group you mentioned but I'm still awaiting a response so hopefully I will be able to have another good old moan on there smile

      Just writing on here combined with your kind words of encouragement boosted my confidence to take some action and as result I made a few phone calls today and I was given some hope that things may move on a little quicker than I had previously been told, fingers crossed here!

      In the meantime thank you for you help and advice

      Sue x

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    • Posted

      Hi Sue,

      Look forward to seeing you on the group, I'll ask Sallie if she saw the request, she is our admin and the lady who had a big article written about her in the daily mail after 7 years of misery due to the ignorance of GP's.  Take heart with your -2.5 t score in the spine, that is just on the cusp, for me my spine is -3.6 and nearly as bad in the femoral neck.  I was in the same position, GP saw the dexa scan, did some of the required tests recommended by the hospital but didnt bother with pth.  I am told "it goes off in the van", so why not keep it on ice!!!  They just dont want the expense.  The GP I saw never even read my history about stomach ulcers etc just passed over the Fosomax prescription and more or less get on with it and come back in 5 years (if youre still alive!!)  I declined immediately but accepted their awful Adcal D.  Was only when I joined the U.S. Osteoporosis Foundation (the U.K. version is about as helpful as the GPs) that I learned that Adcal is calcium carbonate, one of the worst and cheapest forms of it.  So I went for a really good product which included Calcium Collagen, boron, dried plum powder and some other ingredients.  I thought I was getting on okay but being as I dont trust the surgery I am with I have all test results printed off and when I went up to see a GP who had flagged my Vit D as not good (it was 113 which is really good) I said why have you flagged that when it is perfect.  She said is wasnt so much the Vit D she was concerned about but the lack of calciuim I was taking.  I said I am buying expensive U.S. products available in this country but she was insistent about the wonderful Adcal.  Anyway, I thought to myself, I'll chew one a week to keep her off my back, so when I opened the results (Ihadnt had time before I went in for the appointment) to my shock I saw my calcium was over the normal range and nobody had even noticed it and there was she trying to get me to chew on 3000mg of calcium a day!!!!!!!!!   With that, I thought this is hopeless and decided to go down the private route and find what I thought was a decent endocrinologist.  Hmm, well, months on, samples put in wrong bottles, NTX bone markers lost twice and eventually an ultrasound done in October 9th, which I got the results back beginning of last month, plus £2600 down the Swanny I realise she was not such a hot shot endo plus had a mickey mouse secretarial service which has caused me a lot of grief.  So now I have written directly to a parathyroid surgeon and wait to see what he can suggest.  I have collated my fluctuating pth and calcium results, plus the ultra sound results which say a possible adenoma 8 x 6mm.  You have to be so careful who you are dealing with.  One of our friends had a so called tip top surgeon and she paid privately only to find he removed lymph glands by mistake.

      I look forward to seeing you on the group.

      Elaine x

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