Help and Advice, please!

Hi All, to keep a short version, I haven’t been feeling well since June this year and I also had the same symptoms towards the end of 2012 followed by a Sinus Infection in Dec 2012. I’ve experienced palpitations for 4/5 years now on and off but these seem to have been a regular occurrence since June but along with palpitations I’ve experienced hot sweats, irregular heartbeat, heart block (been checked by a Cardio) extreme fatigue no matter how early I go to bed and I think a little thinning of my hair around my scalp. My Mother suffers from Hyperthyroidism and had a Hysterectomy at 35 as the docs couldn't get her hormone levels where they should have been. I have had numerous amounts of blood tests within this time but no concerns, TSH levels still come back within "normal" range but fluctuate. I experience nerve pain regularly, muscle pains in legs, tingling, pain in wrists and hands, my periods are irregular, every 35 days give or take a day and I could tick off most symptoms in Hyperthyroidism and also symptoms for Hypothyroidism and having recently had a Neck X Ray and neck CT for an enlarged Thyroid Gland, I was told I had a small colloid Cyst on the left lobe of my Thyroid but no action needed as yet (I’ve had a lot of radiation within the past 4 months) I was admitted to Hospital in September with abdominal/menstral pain which resulted in a Laparoscopic Appendectomy which showed Mesenteric Adentitis but no ruptured/inflammed appendix. I also had low Magnesium and Potassium levels. Since then I have been back and fourth to my GP trying to find an answer of feeling unwell. I have a feeling of someone pressing on my throat and also a feeling that I have mucus in my throat constantly, I have had numerous glands in my neck for a while and I experience tight neck muscles daily. I’m also concerned as I had more metabolism blood tests recently and my Calcium levels were elevated and I can relate to some Hyperparathyroidism issues. I am currently in Australia until end of Jan and luckily managed to request an Endocrinology appointment before I leave but I feel so rubbish that most days I cry, mainly out of frustration from feeling like this for such a long time and being told no Thyroid issues because my ranges are "normal" and getting nowhere. I don't feel my hormones have been the same since having my 2 children. I changed my diet 3 years ago and lost weight healthily but since then I can't seem to put weight on even though I have an appetite. I look in the mirror and feel like my face doesn't look like the old me, it feels puffy and looks tired and I have a constant cloudy head daily. I'm also currently waiting on Biopsy results from an abnormal smear which is my first abnormal smear and never missed an appointment.

Any opinions would be appreciated, do you think I'm on the right track with seeing an Endocrinologist? We all know our own bodies don't we!

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32 Replies

  • Hi Essex

    It's amazing a lot off the things you have said, I suffered from for years and I got my first abnormal smear test and was recalled to be told it was a hormonal change, looking back I was getting symptoms for about eight years but did nothing about them until I was really ill with hyperthyroidism. I think you are doing the right thing getting an appointment with an endo. Don't be fobbed off by anyone you know your body. Take care and hope all goes well.

  • your calcium levels are elevated? that is the major indication of a parathyroid adenoma. you should see an endocrinologist. the hair thinning is another sign of parathyroid adenoma, in fact quite a few of your symptoms sound like it. you will need a blood test to check for it and then will need an operation to remove it.

    I had a parathyroid adenoma for 7 years before it was detected. I was aware I had elevated blood calcium but didn't know it was bad. I suffered depression, exhaustion, stomach cramps, lots of things that I put down to my time of life. no one knew what was wrong with me, in spite of me being hospitalized for the stomach pains and for false labour symptoms, until I got graves disease and was sent to an endocrinologist who looked at my bloods and told me about the adenoma. I had both my thyroid and my parathyroid growth out in the same op.

    parathyroid adenomas are usually not detected since they are rare. they are picked up in autopsy usually from someone who died of heart attack, stroke, breast cancer or ovarian cancer, or testicular cancer in a man.

    after the op, watch for signs of tetany. the calcium will leach into your bones and you can become severely low in blood calcium, but calcium and vit D will fix it easily.

    google parathyroid adenoma and you will probably see lots of your symptoms on the list.

    good luck.

  • Hi First of all for the heart make sue you have had a 7 day monitor, ailing that a 24 hour one. With intermittent heart problems, electrical it is the only way to find them

    For the thyroid you need a tSH, T4 and Free T3, basic tests. If the GP will not do them do them "on liine" more info if you get back to me.

    If the cyst was a nodule and showed on an ultra sound, then this should have a fine needle biopsy, common but routine.

    Essentil magnesium and Potassium are treated by a cardio, with many blood tests, weekly if on much, They are electrolytes. MY feeling for this is vital you see an ELECTRICAL cardio, specialist in this field, large teaching hospital. There is still a lot of ignorance regarding electrolytes even with cardios.You need calcium , corrected calcium tested , also an electrolyte, so might as well have a vit D too( hormonal), then you can have treatment if low.Also make sur4e your sodium is just in range ( U`s and E`s., kidney function) theses 4 are electrolytes, very dangerous to heart and kidney if too high or too low in range. That is why on treatment weekly tests are essenital

    You also need to see an Endo, find a good one yourself, then ask for a referra;l. This is considered essential with the possible heart symptoms I think Endo will also want to test your Parathyroid, as this can account for someof the problems..Calcium level ,if over range, may indicate this.

    A good Endo has a huge range of expertise, including , of course, electrolytes, thinking of the Magnesium and Potassium, these are urgent.

    I would not wait until you are back in the UK

    I hope that helps.

    Best wishes,


    Not sure if you know but,if you wish to answer a post, click on "Reply to this" under that post.

  • the parathyroids are little organs at the back of the thyroid. if they were attached, which they are not, they would sit like dots the size of a grain of rice at the top and bottom of the "butterfly wings" of the thyroid. their function is to regulate calcium in the blood, turning on and off a bit like an automatic waterer in a trough. when you get an adenoma, one of them enlarges and is constantly "on", leaching calcium from the bones and flooding the system with the hormones it uses to trigger the calcium. this is what causes the symptoms. the other parathyroids turn off and will stay off until the malfunctioning one is removed. then they take a while to work out that they need to turn back on, which is when you are likely to get tetany symptoms. one or more of the 4 parathyroids can malfunction

  • Essex, what part of Australia are you in? I am in Adelaide.

    we have some great endos here, but make sure you get the parathyroid checked. I am quite excited about this since you are the first person I have heard of with these symptoms since I had mine out. I remember feeling so happy to find out I was sick! I had been feeling like a lazy, grumpy bitch for years, plus having all the stomach problems and feeling like a hypochondriac since they couldn't work out why. nice to know it wasn't me, but only illness.

  • I have been ill since April when a pharmacist told me I was thyrotoxic.Drs told me thyroid levels Normal range.I had all symptons of hyper.Thyroid scans normal.Holistic Gp found B12 deficient cortisol levels , gut & liver inflammation .I had been to 4 specialists including endo who was useless told me my tremor wasn't thyroid.All I can say is keep pushing you need a dr who looks outside the square.

  • Hello, Essex 21 firstly your issue isn't short!

    I' felt the need to contact you because you sound as though you have many things going on for you....

    You can private message me as I work with people regarding some of the issues you mentioned


    edited by Admin

  • This is a link re Parathyroid:-

  • Thank you everyone. My Calcium level wasn't terribly high, it was 2.66 mol/L and then when corrected it was 2.54 mol/L (Australian Ranges which is 2.55 mol/L) so it's still the high end of the normal range. I have an Endo appointment on 22nd Jan but I am nagging everyday for a cancellation appointment. I have since had my Potassium & Magnesium Levels tested numerous times and they were normal. My TSH was 0.77 in Sep and 1.97 in November and my FT3 was 4.2 pmol/L and FT4 13.6 pmol/L (all Australian ranges) I've seen 2 Cardiologists, had a 24hr heart monitor, along with 2 stress tests with a good exercise rate, 2 heart ultrasounds and my heart function is fine. Just want to get to the bottom of this!

  • That is a high calcium level in my opinion, it should be between 2.25 and 2.5:

    You must get your vit D and PTH tested and ask to see a Specialist, the website Shaws posted is excellent, but bear in mind it uses different units for calcium and vit D so you have to convert yours.

    I don't know what kind of Magnesium test they've been using, but the plasma/serum magnesium test is not a good indication, it needs to be red cell magnesium (i.e. testing cellular levels). Magnesium is so important to our bodies that we'll take from the cells to keep blood levels normal. Abnormal blood levels are a sign of severe deficiency and usually only seen in people who are actually hospitalised they are so ill. Here is a link about magnesium:

    And another:

    Note that it says low magnesium can be found in disorders of the parathyroid gland - we're back to that again. You simply must get your parathyroids checked by a Specialist.

    In addition to that I would ask to be screened for Pernicious Anaemia / B12 Deficiency, as many of your symptoms tie in with that as well, including abnormal smear test results:

    " A woman with low B12 levels may have a false positive Pap smear. That's because a vitamin B12 deficiency affects the cells certain cells, called epithelial cells, look."

    Everything you need to know, and links to other places, found here:


  • my calcium was only slightly elevated too, which is why my doctor wasn't concerned. but it doesn't matter how elevated it is, it is still very likely to be parathyroid. the causes of high calcium (I was told) a) you are dying of cancer and in the last stages (which you'd know) b) parathyroid adenoma or c) sarcoidosis. 98% or more it is parathyroid. worth getting checked and a blood test can tell you. if you have it and it is not removed it will eventually kill you. not may, will.

  • Anybody who's had their parathyroid removed, has this cured you?

  • yes it has

  • I also had graves disease, so I still have thyroid issues getting the balance right with my meds, but the parathyroid is good. very occasionally I will feel tingles that remind me of the tetany I had after the op, but taking some calcium and vit D fixes that. I believe it is a bit of a hangover from the other 3 parathyroids being "off" for 7 years.

  • Well I'll be on the phone in the morning to see if I can get a cancellation appointment, trouble is I'm heading home to UK end of Jan but I need this appointment! I've done so much research on Thyroid and Parathyroid that I basically researched elevated calcium levels as I was told that when corrected they were "normal" but I know my body isn't right, and I asked for the Endocrinology referral and I have all my notes etc ready to go, without me doing that I'd still be back and fourth, some GP's need nagging!

  • best of luck. get them to specifically test the parathyroid. I don't know what the blood test my endo did was called, but he checked the parathyroid and it came back as definitely needing removed. once you have a diagnosis you can start getting on a waiting list for your op.

  • seeing an Endocrinologist yes correct thing to do is time you got sorted out really one way or another ...I feel sad for you life goes by fast and to be so unwell for such a long time is very frustrating I know myself ... ...I wish you well in your search for better health seems to me you are being overlooked in many ways have to fight to get noticed ...Good Luck to you ...xx

  • Magnesium IV or supplementing has often been used to "cure" palpitations. I can find many more testimonials like this:

    I read about magnesium in the archives. I'm a little confused. I saw that mag iv needs to be done if severely depleted but not sure about po. I'm sure you've done extensive repeating regarding this topic....I started taking Mag Asporotate,mag citrate & orotate 400mg 2 days ago. What would be a td for this? My palpitations are 80 percent improved since. I can't tell you how much I appreciate all the help your archives have helped me!!!! You said in the last message about the skipped beats that they are most likely benign depending on age. I am 31. Could it be possible that the mag has helped this soon? Thank you so much

    I had palpitations, some fluttering and a full blown panic attack about 2 months ago. The doctor suspected Mitral Valve Prolapse (Echo did not show it) and put me on Atenelol. I also started taking Magnesium (Malate and now Citrate). I am feeling great! No palpitations, No irregular beats. I think the Magnesium is helping a lot though the Beta blocker is keeping my heart rate down. I also started doing SR.

  • If it is the Parathyroid, will it def show in a PTH blood test?

  • I believe so. when the endo did the blood test to check mine it was easily seen in the test. because I had a history of sarcoidosis, we wanted to double check that it was definitely the parathyroid that was causing the elevated calcium, so we tested for both. my bloods came back that I had both, but I definitely had the parathyroid adenoma. my sarcoidosis is "silent", has no symptoms so is being ignored since it is causing no problems.

    of course, I am not an expert. but even with the extra complications with me it showed easily in the blood test, so it should be easier with someone without the added problems.

  • Well I've managed to get a cancellation appointment at the a Endocrinologist on Weds, horrah! I had another calcium blood test done yesterday 2.56 mol/L and it wasn't corrected this time as Albumin wasn't outside the 40-45 g/l range but it was 45g/l. PTH was 32.2 Ng/L. Having done so much research on Parathyroid, I'm guessing this is a case of Parathyroid Disease? Can anybody shed some light..... PTH doesn't have to be high also to be disposed as Hyperparathyroidism does it? Does anybody know why TSH fluctuates, today it's 0.520 mIU/L whereas last month was 1.97 mIU/L and my FT4 has changed from 13.6 pmol/L to 16.9 pmo/L since last month?

  • because I have moved and was living in my car for a time (was going to be droving cattle along the roadsides to feed them and using the car as a mobile bedroom) I threw away a lot of my medical info. therefore I don't have my blood test results from when I had the parathyroid adenoma, so am unable to answer your questions.

    with me, the endo was sure it was the adenoma before he did the blood test, because of the calcium being a little high. he was only testing the parathyroid blood test and also the sarcoidosis because of my history, to satisfy my questions.

    at the time I was diagnosed I had hyperthyroid (graves disease), hyperparathyroid and sarcoidosis all at once!

    really pleased you will be seeing an endo on Wed. keep us posted on what happens.

  • If you can, I'd get checked for iodine deficiency by a 24hr urine (collecting) sample also.

  • Totally dismissed! Had my Endocrinology appointment today and left in tears. I was in there 15 minutes only to be told there's nothing wrong with me and get my levels and antibodies checked in 3 months time :-( totally gutted!

  • that's devastating. nothing worse than being sick and unable to find out why. what did he say about the high calcium?

  • That they need to be 3.0+ mmol/L to be a concern!

  • worth trying a different Endo when you get home. I reckon the one you saw has never come across it before. Endocrinologists can go through their whole career without ever seeing a parathyroid adenoma. I was lucky to get one who knew a lot about them.

    best of luck.

  • I'm feeling very stressed and worried. As well as all the symptoms I posted I also get a mucus feeling in my throat now and again but I don't have a cold. I feel really tired and just rubbish again. I was googling again last night as I have been to A&E with tummy pain that I've had for a while, had it before I had my appendix removed but they weren't inflammed or ruptured but the Laporoscopy just showed Mesenteric Adentitis which is imflammation of the lymph notes, all benign and usually inflammed when you have a virus. I felt amazing when I came out of hospital, potassium and magnesium levels were good, no headaches (I experience brain fog daily) and felt like my normal self for about a week just tired from the operation. Now I'm back to the tummy stuff, I thought it was nerve pain at first as I do get a tugging feeling around my belly button where the incision is but my belly feels bloated, my back aches around the mid section and I get shooting pain now and again from the upper right hand side of my abdomen right down into my genital area and achy feeling around my back. I had a kidney infection 10 years ago and was in hospital for 5 days. I'm under a Gynaecologist as I had my first EVER abnormal smear and had to have a colposcopy and biopsy which came back as CIN3 so am scheduled for the Loop procedure in January. I thought maybe I had a kidney stone as I've recently had a yeast infection and twice since Sep had 2 urine tests with a small trace of blood. I know a lot of people are saying my calcium levels are not high but I'm panicking now it's elevated for a very serious condition (cancer or something) that nobody can seem to detect. My gut feeling is that it's my parathyroid as I have so many of the symptoms as well as thyroid symptoms. Had numerous amounts of FBC done within the past 7 months and they've all come back fine, only thing they all showed is a low RDW but whenever I ask what this means everyone says it's a pointless part of the FBC and low magnesium and potassium levels.

    Feeling very scared, frustrated and confused. :-(

  • see a different endocrinologist and ask him to check thoroughly the parathyroid connection. I will try to find out what my calcium levels were when I had my adenoma. I see the dr today and had authorized him to get my records from my old doctor, so hopefully he will have them.

    you do not have raised calcium because of cancer, that only happens in END STAGE cancer, so you would already know about that. the Mayo Clinic put out some info about parathyroid which said it doesn't matter how elevated the calcium is, it still indicates adenoma. print this information and take it with you to your doctor. sometimes having a name like the Mayo Clinic behind the info will make a dr take notice.

    I really feel for you and know how you feel, since I had symptoms for 7 years before my adenoma was detected. the endo I saw was Wilton Braun, in Adelaide. he was fabulous. the surgeon, Mr Parkin, didn't believe in the adenoma till he saw it, but Wilton was the one who diagnosed it, just by seeing raised blood calcium. so it isn't uncommon for endocrinologists to say there isn't one. luckily, I had to have my thyroid out anyway so they saw the adenoma when they removed the thyroid. but when I went in for the surgery they were still arguing about whether or not the adenoma would be there. I gave them a big "told you so" afterwards.

  • Thank you. Really appreciate the feedback. I am driving myself insane with worry at the moment and it's really wearing me down. It seems so clear when you read websites that say "calcium levels should not be raised/elevated" and it's always 98% a Adenoma. I'm off to Cairns tomorrow for 2 weeks so won't be able to get to my GP and then when I return to Sydney I have 3 weeks before heading home to the UK so I'm kind of stuck whether to see my GP here again before I leave or just get straight to my GP in the UK, which seems like such a long way off and the thought of having to explain to a new GP my symptoms, results and why I think it's parathyroid fills me with dread. I just want to feel myself again :-( I have to make myself get out the house everyday, I have 2 small children and all I want to do is sit down or sleep.

  • couldn't get my calcium records. the other clinic hasn't sent them through yet. tried ringing them but the person at the other end couldn't help me either. my doctor actually left the clinic too, so she couldn't put me through to him.

    when you get to England go to a doctor and ask him to do a calcium test, then when you get the results ask him to google parathyroid adenoma. maybe then he will act. that's what I'd do anyway.

    if you keep nagging then someone will listen.

  • I will. I will go armed with my notes :-)

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