Recent diagnosis, on going
Help, information and someone who is/has gone through the process. Would like to chat about stuff.
Thanks Kay
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
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
Thanks so much .
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
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
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
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
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
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
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!
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
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.
Hi sorry
I replied to your post 're Hyperparathyroidism earlier with callum68. Forgot to put my name sorry
Sue
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
Was just telling the admin of the aforementioned group and she was quite shocked and asked what hospital you get admitted to.
Elaine
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.
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
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
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 
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