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Has anyone out there had a parathyroid problem?

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mvwaugh
mvwaugh

I have had a raised parathyroid hormone blood result recently also a raised calcium in the blood result. I had raised calcium levels several years ago but after a scan of my parathyroid glands which showed no growths it was put down to lack of Vitamin D and called secondary parathyroidism

I was told to increase my Vitamin D levels which I did and my calcium level dropped. I have continued on the supplementation. I have severe sleep problems, am tired and grumpy, my hypothyroidism been under control for the last 8 years. I am border line diabetic. Almost 73 years old. Any suggestions welcome

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  • jghut
    jghut mvwaugh

    Posted

    I am 68 years old in the U.S.  In 2008 my doctor found that I was producing three times as much calcium as I should be.  I was sent to an endocrinologist and she did needle biopsies.  She found that I had nodules on my thyroid gland as well as "enlarged" hyperparathyroid glands.  It was determined that this had occurred because I had taken lithium for 30 years and it can cause that.  I had surgery.  My thyroid gland, the benign nodules, and three of my four hyperparathyroid glands were removed.  Since that time my calcium level has been normal.  I had been taking 1000 mg. of Vitamin D since 2004.  I think most doctors recommend that basic amount.  I cannot speculate as to what is causing your sleep problems, but a lack of  adequate sleep  could cause anyone to be tired and grumpy.  Have you had complete blood work done for everything lately?  I see that you say you are "border line" diabetic.
  • frances02122
    frances02122 mvwaugh

    Posted

    Hi everyone, i have just found this discussion and wondered how you were all doing. I was diagnosed with primary hyperthyroidism about 12 months ago after being referred to a endocronologist after 12 months of seeing a rhuematologist for tiredness, muscle and bone pain. I had 12 months of going for blood tests, a bone scan which showed some thinning of bones, and an ultra sound of kidneys which showed no stones only a benign cyst. I have slightly raised calcium levels and they just kept checking them over a year during which i was told they did not think it was my parathyroids causing my symptoms but might take them out if i wanted them taken out. I was confused by then as i only wanted them removing if they were sure it was them causing the problem. My symptoms were tiredness, muscle and bone pain, cramps and stiffness, indigestion and ibs. Only recently did my doctor give me a copy of the letter which states my diagnosis is primary hyperthyroidism. I feel to be getting worse pain wise now and have terrible heartburn/chest pains so got my doctor to refer me back to the endocronologist again. I had my vitamin D checked and its extremely low so was told to take  it to try raise it, but have read that you should not take vitamin D if you have hyperparathyroid problems taking vitamin D with raise blood calcium and make it worse. I am going to ask my endocronologist when i see him next month. I am also worried as i am 55 years old and was originally told that the age limit for this operation is usually 50. I know in the USA there are surgeons that can do  mini - hyperparathyroid surgery that only takes 20 mins with a tiny cut and its practically walk in and out the same day. I do know there are surgeons in the UK that can do this but am trying to find out if there is one in Yorkshire area who can do this on the nhs. I live in north yorkshire but am willing to travel if i can find one.

    Also to add to my problems i have just been told my cholesterol is high (7.3 overall) so have to see nurse at surgery next week and hoping she does not suggest statins as i already have bad muscle and bone pains. Any advise or experience with this problem would be appreciated thank you.

    • angela46352
      angela46352 frances02122

      Posted

      Hi Frances. Just thought I would say hello and tell you my own experiences. I was away on holiday in Greece (I am from the Uk) and I got terrible pain in my side. Turned out I had kidney stones stuck. They put a stent in and when I got back to Uk I could then sort the stones out. A doc here diagnosed me with primary hyperparathyroidism as my calcium and PTH levels were higher than they should be; and I duly had the gland taken out. I was also concerned about the op but the surgeon here in Norwich was very good. Scar is about 2.5 inches long and getting better. Had it done in Oct 2014. I wouldn't worry too much about mini op as I was fixated on going to Florida for a while; until my GP convinced me it would be just fine here as this surgeon has done many. I now have normal calcium levels. My faulty gland did not show up on any scans but he found it during the op. They have to check all four glands anyway. I just have another op to sort my stones out on Monday. I wish you luck with your journey to health.

      A

    • shirley68565
      shirley68565 frances02122

      Posted

      Hi Frances. I have been like you with the same symptoms. My indigestion is getting worse and the consultant doesn't take me up on it. I've been diagnosed for 3 years and am at last on the waiting list for the operation. I was put on the list in October, had my pre op on 11 November and still waiting!! My "post op" appointment has just arrived with my endcronologist for 23rd October! I am in Lancashire. Like Angela the parathyroid did not show on the scans. The surgeon said he will start with a small cut but might have to make a larger one if he needs to. He specialises in thyroid and parathyroid surgery. I am in my late 50's.
    • frances02122
      frances02122 angela46352

      Posted

      Hi Angela and thank you for your reply if has given me hope i may be able to get my parathyroid problem sorted out eventually. Did you have low vitamin D ?  I read its common with hyperparathyroidism and that you should not take vitamin D until after the operation as your bodies way of trying to keep the calcium level down.  I hope operation to remove the kidney stones goes ok and you recover quickly, best wishes for Monday.
    • frances02122
      frances02122 shirley68565

      Posted

      Hi Shirley and and thank you for reply.  The indigestion really is a pain, i ended up in A & E once convinced i was having a heart attack with sharp pains in chest.  I used to get the feeling of acid coming into my throat  but now i just get feeling of soreness down from throat and can feel food going down when its bad.  I always try to sleep on my left side as i once read a tip from a surgeon that said if you sleep on your left side its harder for acid to come up from your stomach. I was given Ompranzole by doctor but only took it a couple of times when i got visual disturbance (flashing lights) and went to A & E who said to stop taking them as it can be a side effect. I tend to stick to Gaviscon but only take one spoon as been told it contains calcium.  Recently been having odd pains around chest area which can be frightening but if i can burp i know it is probably due to indigestion.  I am really hoping this will all stop with removal of any abnormal glands if i can get the operation. I think each hospital varies as to what treatment they will give you probably due to money shortages. Hope you get your operation soon, let me know how you go on please, best wishes Frances.
    • shirley68565
      shirley68565 frances02122

      Posted

      My vit d is low. When first tested it was 16. No wonder I had bone pain. I was put on high vit d tablets and it went up to 60 after a while but it put my calcium up so I was taken off them. My vit d has now gone down to 32. Have you had yours taken?

      Shirley

    • frances02122
      frances02122 shirley68565

      Posted

      Hi yes i was just told my vitamin D was very low and i should take some but they did not say what dosage to take.  I have bought some but after reading what the american doctor said about not taking vitamin D until you have the faulty gland removed i have decided to wait until i see the endocronologist next month.  I dont know what my vitamin D level is but am going to try find out from my doctor. Do you get any muscle pain or cramp ?  Frances
    • angela46352
      angela46352 frances02122

      Posted

      Hi Frances. Yes they told me that my Vit D was low and they wanted to bring that up before the op so would give me Vit D to take. Like you I had also read this was not a good idea so I only took a couple. I have more now after the op as I asked my GP for some but now I keep forgetting to take them. After telling me I needed Vit D the hosp forgot to prescribe me any. After my reading that it may be harmful to take it whilst hyper calcium I didn't bother much with it Til after but have now trailed off again. I might take some every now and then.

      Angie

    • frances02122
      frances02122 angela46352

      Posted

      Hi Angela, i think i wont take any until i see the endocronologist and ask his opion next month.  Do you feel a lot better apart from the kidney stones since the op ? 

      Frances.

    • angela46352
      angela46352 frances02122

      Posted

      Hi Frances.

      It's taken a few months but yes I do feel a lot better thank you.

      Just glad it's all done too!!

      Had the kidney stones lasered last week. Was in a bit of pain that night and again after the stent removal both kidneys but now I am doing great!!

      Wishing you well

      Angie

    • shirley68565
      shirley68565 angela46352

      Posted

      Hi Angela. Pleased to hear you are now feeling great. I can't wait! Still not had my op. My pre op runs out in a couple of weeks. I'm so used to all my symptoms I don't know what it feels like to be ok!! Shirley
    • angela46352
      angela46352 shirley68565

      Posted

      Hi Shirley

      Hope you get your op soon. It's awful waiting. Keep us posted.

      A

    • shirley68565
      shirley68565 angela46352

      Posted

      The operation went well, had a minimal cut. Stayed in overnight. I had pins and needles in my hands, feet and lips so they took bloods and gave me 2 calcium tablets. I have to have more bloods taken on Friday to check levels. My parathyroid level had gone to 5 from 10 so thats good. Still have pins and needles today. They did not give me any calcium tablets to take at home so will wait and see what happens. I feel very weary but its early days only had the op Mon! No pain with the cut, it has been glued. I have to have bloods taken in 3 weeks and see the surgeon in 3-4 weeks. Don't know if I will have to see my endercrine Dr sometime.

      This forum has really been good and it has helped talking to people with the same problem. Take care Angela.

    • angela46352
      angela46352 shirley68565

      Posted

      Yaaaayyy!!! So glad it's all done for you. You must be feeling relieved?! I think it's the waiting around that's the worst! You will feel a bit tired; it's the anaesthetic and of course a lot of worry but it's all done now !! You will be feeling great in no time. So pleased it's a minimal cut too. I can hardly notice mine now.

      Well done for getting through it smile

      Hugs, Angie.

    • gaynor76067
      gaynor76067 shirley68565

      Posted

      Hi Shirley. Pleased that you have had your operation now. After 8 weeks my scar is hardly noticeable and I havent had a single headache. Isnt it a relief when its sorted. My endocrinologist signed me off 2 weeks ago and I have to take vit D for the forseeable future. Now I have to decide whether to have Denusonab injections to tackle my osteoporosis. Thats a difficult one because of the side effects. Have to make up my mind by Monday and dont know what to do
    • shirley68565
      shirley68565 gaynor76067

      Posted

      Glad it's over Gaynor. Still feel a bit up and down. How did you feel after? I'm probably rushing things. Looking forward to being well again! Let me know what you decide about the injections. As far as I know 2 years ago I didn't have osteoporosis so I should be fine.

      Shirley

    • lark59275
      lark59275 shirley68565

      Posted

      I am so grateful to find anyone discussing parathyroidism. I was recently diagnosed through blood tests and a scan. I have two bad of the four that need to be removed. I feek so very sick and no one I know has any knowledge of parathyroidism so I cannot find out if this is normal. I have awful depression, feel so weak and tired and have no patience. Everything seems overwhelming. I am scheduled for surgery on May 20th. Please tell me the surgery helps an is my current misery part of the symptoms. Thanks so much!
    • Fluffy43
      Fluffy43 lark59275

      Posted

      Hi Lark,

      How did the op go? Are you better now? Did they have to do a one inch or two inch cut. Did it heal ok, were you ok on the general anethestic and did you need any antibiotis, my story is on this site somewhere, yet briefly, they think I might have two faulty parathyroids yet the scans aren't clear. Also I was diganosed with chronic Fatigue aged 18 yrs after being ill since 8 yrs I am  43 yrs old tomorrow and they are wondering if the chronic fatigeu/ME was this parathyriod prob all along as the symptoms are the same or whether I have both illness, I am hoping after the op  July 17th 2015,I will get rid of some of the awfull fatigue/ bone pain/headaches and general crap feeling and be able to have a quality of life back!

      I hope you are feeling loads better, here's to happy healing

    • siobhan1978
      siobhan1978 lark59275

      Posted

      I felt just like you and I hope  your surgery has improved matters for you! I know it did for me.
    • lark59275
      lark59275 Fluffy43

      Posted

      The surgery went great. I stayed overnight in a recovery room. The depression and confused thinking That had become so dramatic and were truly frightening me were gone when I left the hospital. Unbelievable! My physical health has not recovered as quickly but I have some habits to change that would make a huge difference...especially in the sleep area. My life has an exceptionally high amount of stress in it so the relief from the crushing depression and confused thinking is a huge blessing. My scar is about an inch and a half and hardly visible. I fully believe I would have committed suicide if this condition had remained undiagnosed. The multiple symptoms in conjunction with the severe depression were becoming unbearable to me. I am so grateful for the surgery.
    • lark59275
      lark59275 Fluffy43

      Posted

      How did your surgery go and have you experienced any immediate relief? My physician suggested that it can take up to 6 months for all physical changes to occur as our system had become use to such extremes of calcium.  

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Fluffy43
      Fluffy43 lark59275

      Posted

      Hi,

      Had op last Monday, INTERESTING!!, Lots of general Anesthiic!!! Brillant team in recovery as felt very sick and dizzy and pain- had a drain in- nick named it vampire blood bottle!!! they were keeping me down in recovery as there was no bed for me ,which i needed the extra time down there for liquid anti sickness and pain relief and then I was quite lucky to get my own room and toilet, They were great about me taking my homapathic remedies too. then the next day they dropped the bomb shell and said they had looked at all four and they removed one slighltly bigish -yet did not think this was the cause- then they removed the left thaylmus- where sometimes they can be -yet they wern't there either, As after op they retested my PTH level and it was reading 25 still high.

      So they think there is a rouge one in my body somewhere that needs removing! Not looking forward to how that is going to be found and removed- Hey How I'm not a normal case!!!!!!!!!!! I then had drain took out on Tuesday morning which started intense reaction to dizziness and shakes and nauasea- so stayed in another night and made it home from oxford to swindon on Wed Morn- going to have a shower this morn and hopefully stichs come out on their own, if not have nurse appointmnet this afternoon. Pain across shoulder neck coller bone intense! took arnica/ rhux tox/rutagrav for brusing Phosphourus for general anethetic and hypericum for cuts. the bruising is less colurful now and got paracetomal down to 3 lots a day instead of 4 and cuts are pulling slightly less still exhusted after a week and have lots of burps from where they put the tube down! Yet doing ok ish

    • Fluffy43
      Fluffy43

      Posted

      Hi All,

      Just re-reading my Posts, I DONT want to put anyone off, my pain and brusiing was due, I believe, to having the Thymus removed.

      THE VAST MAJORITY OF PATIENTS CAME OUT WITHIN HOURS WITH LITTLE OR NO ILL EFFECTS/BRUISING (according to my partner who was there waiting for me) - DUE TO THE MATTER THAT THEY ONLY HAD EG. ONE/TWO PARATHYROID REMOVED. IT WAS ONLY MYSELF AND ONE OTHER LADY WHO WERE IN A SIMILAR SITUATION - WHO SEEMED TO HAVE MORE DONE AND NEEDED MORE RECOVERY TIME. I WOULD SAY THAT WE WERE 20% OF THOSE OPERATED ON THAT DAY - THE 80% WENT HOME AFTER A QUICK RESUS/RECOVERY TIME AND THAT INCLUDED GETTING DRESSED AND CHATTING WITH FRIENDS AND RELATIVES IN THE WAITING ROOM (SO AS TO ALLOW THE LAST ASPECTS OF THE GA TO WEAR OFF?).

      I hope that clarifies and puts others' minds at rest.

      Everyone and every Op. seems a little different - as we all are as individuals.

      Has anybody had the Op. and is in the same situation as me? I would love to hear more (perhaps PM - if that's possible on here? - me if you like).

      Kindest regards,

      Fluffy.

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