Just diagnosed with osteoporosis

I went to my yearly gyn appointment and he wasn't there, they botched it up. But I had my bone density and the tech told me I have it and it doesn't look good. I was so upset I had to take a tranquilizer when I got home. As far as I recall, my last one which was about 4 years ago right before I went into the hospital was normal but I'm going to get the records from that doctor and report. I have been in early meno for almost 10 years now and feel this is all caused by my type 1. I was on hrt then but I can't do that now apparently due to having had a dvt/blood clots. I wonder now if they will consider putting me back on low dose hrt? I looked at the list of drugs she showed me to treat this and they all have horrible side effects I really don't want to go that route but if it's really bad I may have too. I have been taking lanzoprazole for a few years for my reflux- I know that can drain calcium absorption so I'm going to go off it and try one of the antihistamine acid treatments instead or maybe just pepto bismal and see how I do on that.

I wonder if my early hashimotos is affecting this? I had a high calcium level the time before last. and I stopped supplementing it completely since June. I wonder if I should start on the levy now and see if it helps this? I do eat a diet with cheese, sour cream, heavy cream, fresh veggies and fruit and I started taking vitamin d with k2 also. I wonder if I should add the calcium supplement back in?

I will be seeing my doctor next Monday and will see what he says. Maybe it's not as bad as she made it out to be but she said I'm at risk for fractures now which is scary. I had just resolved to start riding my bicycle again and I wonder if that's a bad idea. I'm pretty active in terms of always on the go when I'm not sleeping, on an active day at home even without my walks which are 2-3 miles on average my fitbit said I'm walking 3 miles or more just from doing things around the house.

If you have osteoporosis did you have symptoms such as pain/fatigue and things that like? I wonder if it has been contributing to me being so fatigued. Part of me also wonders if they made a mistake- I hope so. How do you treat yours and did hypo if you have that affect it at all?

I also developed pulsatile tinnitus a few weeks ago and I have to get a bunch of tests done now and I'm getting kind of overwhelmed with all of this to the point of wanting to just sleep a lot. Fortunately the PT sound is gone now and I'm hoping to was due to an unseen ear infection or a bad cold I had.

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  • It is good that you are taking the K2 because the K 2 makes sure that whatever calcium you supplement or take in with food (my preference) will go to your bones and your teeth and not into your arteries and soft tissues. Weight bearing exercises are supposed to be good in order to maintain strong bones.

    Don't panic. Make sure they give you some numbers. Most of us have some osteoporosis if we live long enough. I have been using natural progesterone cream for years and years. It is supposed to help build up bone density if needed. Soft drinks, sugar and an acid environment in the body isn't good for the bones. The body will literally 'leach' calcium from the skeleton in order to buffer/neutralize the acid in the body if need be.

    Instead of your acid reflux meds.. have you tried the homeopathic cell salt 'Nat Phos' 6X? I rarely have indigestion but when I do, I take 3 - 4 of these little tabs every 15 - 30 mins until I get relief. I usually only need to dose it 2 - 3 times and the acid stomach is gone.

    Another thing to look at for indigestion is .. if your thyroid meds aren't optimal you may not be making enough stomach acid in order to dissolve your food quickly and move it on out of the stomach in a timely manner. Supplementing with digestive aids can be helpful.

  • Thanks. I looked at that med but it has lactose in it so I'm not sure if I can take it or not. I got some slippery elm and zinc spray. Even after one day off the lansoprazole I'm alot worse. I will have to cut out some foods again such as vinegar in my salad dressing and there was pepper in some gf falafel I have been eating which I didn't realize. I have eliminated tomatoes and stuff like that years ago, things like that are only occasional for me. I will write more about this at some point- for now: my reflux started years ago and I don't think it is thyroid related or actually low acid because endoscopy showed irritation and cell changes at that time caused by too much acid. It got much worse after my first neck injury in a car accident when my posture changed and the flap between the esophagus and stomach was weakened. At that time I went to a diet of only rice, water, plain chicken, iceberg lettuce and granola bars for 8 months and double dose prilosec. I healed a lot. Then I was off the acid blockers for quite a while. But a few years ago things got worse again and i went back on pepcid first and then lansoprazole.

    I had gone to an allergist for testing to see if i was allergic to preservative in eye drops when my eyes and my whole body was reacting before my diabetes event/diagnosis and they said my asthma/lung capacity was worse which is affected by reflux at night which is true. She wanted me to medicate the reflux more so I may have switched to lansoprazole at that point I can't remember now.

    My acid problems are pretty severe and it is going to be hard if not impossible not to medicate it in some way. I just took my first levy dose and I feel worse already, not sure if it is affecting that.

    I feel so depressed about the osteo thing right now and I'm exhausted. I will reply more to everyone later. Thanks so much for all of your replies. my first choice would be diet/supplments/ weight bearing exercise and hrt but unfortunately they said NO hrt of any kind due to my dvt. I do use a very low dose estrogen water base cream 2x per week topically for vestibular irritation/vulvadynia but I doubt that would help the bone issues at all. I'm hoping maybe they are wrong.

  • drmyhill.co.uk/wiki/Osteopo...

    A friend of mine was recently diagnosed and has embraced the above protocol. She thought Dr Myhill amazing. She has written a good book called - Sustainable Medicine.

    Calcium is not well absorbed from tablets and recent research has made connections with heart issues. Calcium is involved in osteoclasts - which is the breaking down and removal of old bone. Osteoblasts are needed for building new bone. The injections have horrid side-effects.

    You also need Magnesium. B12 is also involved in bone formation.

    I would certainly have all your thyroid tests done and the basics - B12 - Ferritin - VitD - Folate - Iron. Maybe your FT3 is low.

  • thanks I've had them all done and posted them here.. see my old posts. I will try to repost all of this asap and respond more.

  • That's OK. I have re-read your previous threads. Perhaps it would be helpful to post details on your Profile so that people can reply appropriately. Some people do not have the time to scroll through previous posts for results. :-) Also list your medications and supplements - because I am slightly confused. Low D result looks alarmingly low and now you have osteoporosis - so is there a connection ?

  • I just did a long reply and it was deleted somehow, lol.. the short version is a take tons of supps. will list them soon. I don't want to put all that in my profile because people could recognize me and it is a lot of info to put out there. I don't think my D was alarmingly low though? at the low end, I know it needs to be higher for H. yes, probably a connection but there are a lot of other things going on.. this has been going on for years prolly with everything else. I haven't been feeling well for years now. First scan showing O was in spring 2012. A scan in 2005-6 showed no sign of it.

  • 000ggg - did you have a look at the link I posted 5 days ago. It really is worth a read. If you only learn one thing it has to be worth it :-)

    See above !

  • I did look at it but I haven't had time to read the whole thing yet- I'm going to go back to it asap. I'm also having the calcium debate with my father now. He printed an article from harvard on calcium etc and O which says dairy doesn't acidify or leach calcium from your bones. I don't drink cow milk anymore and cut yogurt out for bg reasons except for taziki sauce but I do still eat cheese and I was thinking of cutting that out now too. Problem is with my bg issues there isn't much left for me to eat and I hate vegan cheese.

  • I think you need to report the technician! They are not allowed to give that info, at least not here in the US. Maybe she is wrong.

  • Unfortunately she isn't wrong and I asked her to tell me the results so I can't blame her but you're right she's not supposed to- but either way, this news is quite shocking to me, whoever tells me, and very upsetting to say the least. I also found out today that I was already osteopenic in my left hip and had osteoporosis in my spine on my bone scan in 2012 done the day I was diagnosed with type 1 and while I was already in dka. I ended up in the icu 1.5 days later and my doctor then, who isn't my doctor now, never told me about this. I have been walking around for 4 years with a high risk of fracture with my bones deteriorating and not even knowing what was going on.. that is really just a small part of the incompetency and grave mistakes that were made in my care, but it's still huge because I could have been doing something about this.. I will post the results when I have time and repost all my numbers which I've posted here before.. just check my earlier questions.

    to sum up the 2012 report it says for the lumbar spine, the cerivical one is totally blurry and unreadable! T- = -3.5 and Z = -2.7 classification: osteoporosis, risk factor high. The hip says: T= -1.8 Z=-1.3 classification: osteopenia fracture risk increased.

    I'm sure that my increased pain in my back is due to compression of my spine from this and I've also had 3 injuries and chronic pain from it. I had parathyroid pth tested and it was at the high end as I recall at 50 or so.. I'm having a scan in february so I guess that will show if I have a tumor and that may be the cause or partial cause of this. I'm aware of the florida site I believe.. will post more later.

  • This is dreadful, terrible, horrifying! I am so sorry , that this has happened. Can you sue your doctor for medical malpractice?!! If you can get a lawyer to look at what you just told me..please.

    But, none of that gets you your health back. I am going thru something like this and my doctor, of last resort, has sent me back to endo for thyroid testing, when they do not good. I am sick, in pain and devastated as well. I know what it feels like. I had a doctor, ignore lab reports and my pituitary blew out as a result. I was not able to pursue legal action and was turned down by 1 lawyer. They want an easy case, easy money and apparently mine wasn't it. Molested by another doctor, but would never have gotten anything out of it, because all his assets were protected. He surrendered his medical license.

  • Omg, I'm so sorry this happened to you Faith, that is so awful. I have thought about suing, really I could have for everything that happened with my dka, this doc and the hospital and they knew that because they didn't bill me for a HUGE bill that my insurance denied for the second hospital stay thank god. I told them I was going to sue them if they sent me a bill. One problem is this doc is still my father's doc if you can believe it, lol!!!

    Now I feel I just should have sued them all anyway. I had a lot of damage, blood clots, released with blood clots, my vision went blurry and was damaged, and more damage. All of this could have been avoided by proper diagnosis and putting me on insulin.

    But I know how hard it is to sue because when my mother died due to negligence we had a lawyer and they suddenly dropped the case with no explanation. A surgeon from a major hospital told us she could have been treated there and survived with 40% chance of no major deficit. But said he couldn't testify although he wanted to because it would ruin his career. Since she was in a life threatening condition when she entered the hospital it is still very hard- you have to be pretty much ok and they do something to cause severe damage or death in many cases. In my case they knew a lawsuit would have been much more costly than absorbing my bill.

    As you said it is not going to bring your health back but now I feel I'm at risk for my whole life becoming a disaster due to all of this. I'm scared I'm going to become disabled due to this.

  • i am disabled and would have sued, but probably not have gotten anywhere, anyway.

  • I'm sorry you were disabled.. is it past the time for you to pursue that?

  • it is past the time. I think those statute of limitations are really unfair, especially for rape..it's just unconscionable.

  • I agree there should be no limit. Mine is past the time for my hospital/dka etc. but I think if you were unaware of something that is a different matter.

  • i believe that is true, but i was unable to convince any layer to help me.

  • It is much easier if you've had a car accident injury than for medical malpractice.

  • my boyfriend was injured by a driver without insurance and no lawyer wants the case!!! so nothing was done! If he has his ins. company fix his car and go after the other driver, his rates will go up!

  • Wow, that is too bad. A friend of mine was in a similar situation but she was hit as a pedestrian and did have a trial and a settlement but it was very small. I can't remember what happened exactly but she made a full recovery- she had a pelvic fracture which can still have long term effects. I was injured by someone in my second accident who was uninsured. I didn't report it at first but then I did to my insurance because I had sustained pain and I was covered for the care.

  • Hello 000ggg

    It is not just about the calcium level but a whole series of other factors. Healthy bones & teeth require optimal T4/T3 levels so that old bone can be dissolved or resorbed, and new bone can be produced to replace what was resorbed. When thyroid levels are too low, both bone resorption and production decrease, resulting in fragile brittle bones (osteoporosis, osteopenia).

    High thyroid hormones & a low TSH (especially over range T3) can also cause osteoporosis because bone absorption exceeds bone production with a net loss of bone mass. Bone is continuously broken down and replaced by cells known as osteoclasts and osteoblasts. Each cycle of bone “turnover” takes about 200 days and excess thyroid hormone will hasted this rate.

    I was diagnosed as being oesteopenic after a bone scan in 2003. I too was horrified as was very fit then.

    Dr P said it would have been down to all the years of low thyroid hormone before being diagnosed with Hashimotos 5 years ago and my present endo has confirmed this .

    I am hyper flexible and don't suffer any aches or pains as long as I exercise in order to prevent stiffness. I used to bike ride & swim but have major stamina issues atm so accommodate with walks and yoga.

    I take a complete cocktail of sups so actually don't know which relate to improving bone health but my endo has suggested HRT as estradiol has a bone preserving effect (I am still investigating so haven't started it yet). He has also said now I am properly medicated (T4 & T3) and taking the correct supplements, this will stop the progression and may even reverse (to an extent). I am due another bone scan in 2017 which will prove interesting.

    Other factors to consider are lower levels of estrogen (normal in menopause) and elevated sex hormone binding globulin (SHBG) caused by (high levels of thyroid hormones and especially T3 and Hydrocortisone).

    Excessive Hydrocortisone (HC) supplementation can lead to osteoporosis because corticosteroids not only decrease bone formation but increase bone resorption. Also vitamin deficiencies can also cause oesteoporosis (indirectly) as can PPI's and stomach acid reducers.

    Weight bearing exercise, a healthy diet, optimal thyroid hormones, iron and nutrients will all help in preventing your osteoporosis from progressing further.

    You had a high antibody count so have Hashimotos. Have you addressed any issues associated with Hashimotos such as gut problems, Vit dificiencies, inflammation and low stomach acid that presents in the guise of acid reflux? (See link below).

    Tinnitus (pulsatile or not) can be a symptom of low thyroid hormone and many members ( myself included) complain of this.

    Flower

    Low Stomach Acid

    hashimotoshealing.com/stoma...

    Too High or Low Thyroid Hormone causes Oesteoporosis

    tiredthyroid.com/osteoporos...

    Oesteoporosis - A Natural Approach to Helping

    drhoffman.com/article/natur...

    ……………………………………………………………………………………………………………………...........

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    …………………………………………………………………………………………………………………...........…

  • Wow! This is very interesting. I lost so many teeth in the last 3 years, I've been hospitalized 3 times for severe stomach digestion bloating problems. Tests and tests and tests... Finally asked my rheumatologist to to test my Thyroid after getting worse and worse after she had me file for disability due to IGG immune issues, Lupus, Fibro and RR. Well, I have Hashimotos Thyroiditis and NO T3 or T4. I have osteoporosis of my lower spine and hurt my SS joints during Pilates. Have been basically bed ridden for 2 whole years of my life!!! I am anemic as well and have a progressive red blood cell decline. My doc was great, but not my PC. I did the research and asked for the tests,

    And I found my problems. My shrink asked me to have my thyroid tested as well as she said she didn't think I was Bi-Polar, it could be my Thyroid. If I hadn't babbled and babbled to these 2 specialists, I could be in a Thyroid Coma. I know now how close I was twice. I tried walking, I couldn't breathe, sweated profusely and stumbled as if I was drunk as a skunk. Why don't doctors figure these things out? Why? As a classroom teacher for 33 years, I was expected to figure out which kids had which learning problem, get them staffed and put into the proper classes. I was held under a microscope, why are doctors, especially when you give them all your symptoms. The one doctor at Pain Management said he could kick himself, the signs were all there. He wasn't my PC, but he liked me and thought s lot of me, so he listened and always tried to help me. I'm highly educated and a very smart cookie. I'm not a crazy person whining. I'm still only up to 1/4 of the proper numbers for T3. She the rhumny, said we have to go slow. We discussed what meds I would take and we decided on Armour and Levolxine, T3 and T4, and look how low it still is. I've gotten a light at the end of the tunnel, if I can just hang in there for a while longer. She told me not to give up, it's gonna get better and told me I needed to go out on New Year's Eve, I'd been asked out to the yacht club shindig, told her I was just too tired to go. She gave me a B12 and sent me for a new blood test. I meet her 2 weeks from now and she'll go over my tests and prescribe accordingly. I'm still exhausted, too tired to date, hang mostly by myself at home...but I'm really gonna try to hang in...y'all do the same! 2016 is gonna be so bright for all of us, we're gonna need shades!!!

  • CandyGirl,

    Sorry to hear of your health problems.

    I had bad head troubles too and stumbled like I was drunk.

    After swimming one day the life guards took me to the recovery room and phoned 999 because they thought I was sinking into a diabetic coma (I am not diabetic).

    Low thyroid hormone & compromised adrenal health can cause malabsorbtion and big gut issues. ( link below).

    I hope I need my shades in 2016 too . ! ! ..

    Flower

    Hashimotos and Stomach Acid

    hashimotoshealing.com/stoma...

    The Thyroid & Gut Connection

    chriskresser.com/the-thyroi...

    Hypochondria low acid

    hypothyroidmom.com/cortisol...

    The Iron Thyroid

    nahypothyroidism.org/thyroi...

    Thyroid & mental health

    stopthethyroidmadness.com/t...

    Thyroid & Serotonin

    nature.com/mp/journal/v7/n2...

    When Thyroid Disease Masquerades as Psychiatric Dosorder

    hypothyroidmom.com/when-thy...

    …………………………………………………………………………………………………..

    Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

    ………………………………………………………………………………………………......

  • Thank you, Flower!😎

  • So sorry for what you're going through.. I have no clue how they get away with this stuff.. seems there is no accountability. I also had a tooth crack not long before dka- my dentist said it was due to a metal filling but I wonder now if the osteo played a role too.

  • thanks Flower, Yes I'm addressing it all starting with starting on levy this week. I'm not sure what the "gut" issues are for me specifically- they seem to be different for every person, the suggestions for that diet aren't possible for me which seems to be to eliminate everything, I'm not sure how anyone can do that and survive, but I have eliminated tons of foods for my bg and which I seem to react to.

    I think as you said the t3/t4 issue is going to make the biggest difference here hopefully. Lets see if it helps my reflux issues too- that would help me absorb the calcium hopefully and be able to use it assuming there is no other issue like parathyroid. I don't feel low estrogen is ever normal really, I've read a lot about this having gone into early meno- women didn't usually live much past menopause in prehistoric times and we weren't meant to live and be healthy with very low levels of those hormones imo. Add a few other diseases in and you have a big mess which is what is happening to me now along with shoddy medical treatment which delayed proper treatment.

    Unfortunately it's not clear if I will ever be able to supplement those hormones again due to having a dvt, there is a much higher risk for another event. As I've said a few times I don't believe my stomach acid issues are caused by thyroid issues- i've had ulcers in the past and have had the reflux issues for years which became more severe after spinal injuries.

    I read last night that eating 100g of prunes per day builds bone density without stopping the whole bone making process. I'm not sure if I can do that since I don't like prunes and I would be on the toilet all day, lol. I'm going to try to add some in though with some poppy seed paste also which the article I found said counteracts the laxative effect.

    I'm not looking forward to seeing how bad it is now.

    When you have pulsatile tinnitus is it in both ears? Mine came on after doing some lifting and a severe headache which seemed to be a migraine- it was constant for 2-3 days, then it came and went and now it's gone. Pt is always caused by vascular issues and mine is one sided which suggests it's that and not H causing it. I'm so glad mine seems to be gone now. I wonder if any of the tests the doc ordered will help figure out what caused it. I will ask him about the H connection. My diabetes frequently causes ringing in my ears but only when my bg fluctuates. This doc thinks it's vestibular migraines causing my vertigo and pt.

    Thanks for those links I will check them out.

  • I have tinnitus all the time (so not pulsatile.)

    It is more like a white noise which varies in pitch and intensity.

    Sometimes it is so loud I have to sleep with ear plugs in. I know this sounds mad but it really helps as when I wear earplugs all I can hear is myself breathing.

    Weird.. eh ? ..

    Flower

  • lol.. mine I couldn't hear if I was talking, someone else was talking or there was a background noise so my white noise machine blocked it out but I can't sleep without ear plugs. the combo blocked it. pulsatile can be constant too but it is a pulstating noise which is caused by hearing your heartbeat from your blood vessels usually due to vascular and or neurological issues. Heres's a link: tinnitusformula.com/library...

    Mine was like the telltale heart from edgar allen poe.... I thought I would go crazy from it, plus it's scary because you worry something terrible is happening.

  • Lol,

    yes but he deserved his.

    Horrid horrid man !

  • Hi yes I was osteopenia then osteoporosis onto meds back to osteopenia now back to osteoporosis......eh!!!!

    I eat what I like have had a lumbar spinal decompression/ fusion with lower lumbar and S1 joint giving trouble..I used to be a 5 mile walker with my dogs.

    My body will rebel on me which way ever I go..so now slowed down but love my life as an at home artist (painted on and off all my life) but as one door closed another opens with exciting new opportunities ...planting seeds for the allotment my friend helps with so summer veggies & fruits...listening to my stories on kindle when my body tells me to stop which is every hour or so and my dogs cuddling up to me.

    I have to be careful of my "pinkies" my toes and fingers can fracture easily but just tape them up as the hospital would do then carry on ..

    I had a hysterectomy at about 34 & on steroids this year for 60 years for another condition .My body continues to keep throwing new challenges ie RA (at present in remission) osteoarthritis but I will not be beaten ....

  • Wow determined 56, I wish I had your attitude. My body also throws one challenge after another but I don't manage to have your positivity. It's wonderful and inspirational.

  • Thank you I think it's more"b!!!!y mindless" no special formula...been to physio and got my hand splints / exercises to keep me painting !!

    Hugs to all

  • thanks determined56,

    I'm pretty terrified at the moment on and off and depressed... I'm an artist too- I teach art also. The last time I painted was after my third car accident- I was injured as a pedestrian and reinjured my whole spine. the therapist said not lean my neck to paint so I got a table because I couldn't stand or sit for long.. it was painful and I only finished two paintings. I've been doing mostly photography since then but I want to do more painting at some point. My kitties have been such a support too.

    I ate nearly 100g of prunes today first in a shake for my first meal and then with my berries for dessert.. only 3 to go and I discovered I love them, I had forgotten I was making hamentashen with them when I was doing baking and farmers markets. I hope they will help build bone density along with all of the supplements etc.

  • Yes as an artist and art teacher no wonder you have difficulties I use a trolley table with a a table top easel .I have an electric chair which can support my spine almost standing up , ( except when my dog pinches the seat !).

    I have to say now I have my hand splints it does help with the hand but still get spine lock / pain (obviously) the caution is not getting carried away with painting !.

    It does take me a long time to complete a piece.

    Where abouts are you ....let us know how your doing.

    I paint from photos I taken when I could walk miles & miles with the dogs sunsets/ architecture / forests

    I have a collection of family / friends pictures for portrait .finished a portrait of my late sister which I had framed and gave to my mum for her birthday 27 December.it took about 3/4 months with alot of fatigue and no energy.

    What do you like using watercolour/ oils / acrylics?

    So long for now special hugs for you

    Hugs all round as well

  • wow that chair sounds great! I have a chair I got after my last car accident which pivots, both the top and bottom so it takes stress off your back but for some reason I can never get totally comfortable in it- I think I need a good foot rest, better than what I have. I'm going to try sitting again if I paint again and or standing on one of those pads could help too.

    It is very hard not to get carried away with the painting once you start and I'm remembering now how physically taxing it is too.

    That's great you do the portraits! I want to do some of my kitties and maybe some self pics too at some point. I do tons of selfies with the kitties etc.

    I paint mostly abstracts although I used to do some landscapes, and now only in acrylic because I react to all the fumes with oils- I have some oils still but who knows if I will ever use them again. The last ones I did were tiny stylized kitty cat paintings which took forever. I was in too much pain an pretty much gave up on painting after that. I was planning also to do some pointillist paintings from my photos, I do a lot of landscapes and nature photos also.

    More painting will have to wait because I have injured my right elbow now putting shelves up and I need more pt- ugh. I do use a cart when I'm teaching but even lugging that thing around is a strain. I also have to move tables around because the rooms are all rearranged for each class but I'm going to be extra careful not to carry too much this semester or move anything too heavy around, I just don't know what to expect with this. I have cancelled all my appointments for now because I don't want to get upset before my first week teaching so I can get the bad news later.

    I'm on LI in NY btw. Hugs to you and everyone too :-)

  • I've had a lot of success following an Ayurvedic diet (for my body type "Pitta"). I saw a practitioner who helped to narrow what foods I eat to reduce inflammation. Removing tomatoes, vinegars, red meat, etc. completely rid me of reflux. Tomatoes are the worst and they are in everything.

  • I have pretty much eliminated tomatoes also but sometimes I do still eat them.. now it will be very rare.

  • Hi 000ggg, before going down the HRT route have a look at Susan Brown on Betterbones.com. Very interesting.

    Best wishes, Holly

  • thanks, I would like to read her book but it is too expensive. I'm sure i'll find plenty on line to read.

  • Providing your high blood calcium wasn't due to overdoing the supplements, if you can and have a decent GP surgery (which sadly I do not) that will do parathyroid blood tests, I would ask for one to be done. Primary hyperparathyroidism is a vile disease which gp's and even many endocrinologists have little knowledge about. There are four parathyroid glands situated near the thyroid but are nothing to do with the thyroid. When one of them gets a growth on it, very rarely cancerous, it causes the gland to produce more parathyroid hormone which then extracts the calcium from the bones and puts it in the blood instead so is also a cause of osteoporosis. I don't know if this site is fussed about posting links, but if you google primary hyperparathyroidism and put in Dr Norman, in the Tampa Clinic in Florida you can find out all you need to know. They are the world experts on this.

  • thanks, I did have pth tested by my gp, my endo should have done it I had to argue with my gp to test t3 etc. and I had to argue with my endo to test for antibodies or even consider the fact that my palpitations aren't anxiety! I think I'm aware of that site and I contacted them. they said I need two pth tests and two high calcium I think for them to take me on as a patient. I had one slightly high calcium but they said above 9 is high in they're opinion. I dont' know if anyone will test pth again. Mine was 50 or above at the high end of the range so I'm starting to wonder also if it could be parathyroid involvement.

  • I was diagnosed some years ago with severe osteopenia (the precurser of osteoporosis. Now 6 years later, I have mild osteopenia (I am 69). Instead of taking the Fosamax that was recommended, I took HRT. I found out that I was severely deficient in B12 and commenced B12 injections. However, I believe that the most significant cause of my regaining bone density was commencing a programme of weight bearing exercise. I joined a gym and started to lift weights to strengthen back arm and leg muscles. It is a proven medical fact that gaining muscle by lifting weights also at the same time improves bone density. I have Hashimotos and have since discovered that B12 deficiency and bone loss are co-factors with this condition. You should get your B12 checked. I now also supplement with Vitamin D and K2. Both are necessary for the utilisation of calcium in the bones. I no longer take HRT as the estrogen can cause higher levels of cortisol (I have adrenal fatigue). However Fosamax has more and appalling side effects and many people in the USA who have taken it are now suing the drug company that is responsible for manufacturing it! There is some evidence that it can actually cause fracture of the femur and necrosis of the jaw. I was advised by a professor of dentistry that dentists would not perform implants involving invasive dental surgery, on those taking Fosamax.

  • Thanks mongolia, My vit b12 is high, around 1400 and I have been supplementing that for quite a few years now, it has never been low. Whether I'm absorbing properly it is another matter because clearly there are a few things going on here with early meno, type 1 diabetes, hashimotos and probably parathyroid issues all causing the osteoporosis. I had this already 4 years ago proven by the scan mentioned above in one of my replies, maybe even longer. I had a bone density scan when I first went into menopause which was normal, I've forgotten when it was but around 2005-6, at that point my then gyn said I was going in and out of menopause because it started directly after surgery to remove a uterine polyp and after 2 ovarian cysts one of which ruptured. I know from symptoms I really started perimenopause at 36 or so although no one would believe me and the last few years of it was when I seemed to go in and out of it with periods coming and going. But again at that time I had no bone density loss. I waited through about 2-3 years of hell symptoms before going on hrt due the then gyn saying it was dangerous but in fact I see now I should have been on it right away due to my age and to all of these other conditions which I wasn't aware of at that time. But now due to the dvt they said no hrt but at first my hematologist and another gyn said after the clot was reabsorbed and I was off warfarin I could possibly go back on very low dose and then they said no.

    I'm going to do more weight exercise again but it is hard for me because I've had 3 accidents/injuries in mva the last my spine was re-injured as a pedestrian. I have fybro and the diabetes is affecting my muscles/tendons- I had significant muscle wasting from dka and it hasn't come back to what it was. I have pain with alot of activities, walking is the best but even that is hard and it's freezing cold here now so walking outside is sometimes not possible. I bought a stair thing to use but now I'm really worried that I'm high risk for fracture so any fall could cause that.

    I injured my elbow putting some shelves up- I was worried it might be a fracture now with all of this going on and the pain came on suddenly so I had to go the doc today and will need therapy and now some pain meds and a splint/brace for my elbow. I had put some wrist weights on last night while I was walking around the house doing things and I think that triggered this episode. I tried on a 10 lb weight vest today and it just seems too heavy for me to walk around it- it will cause back pain. I'm going to go to my ortho doc asap and see what he thinks about all of this. I'm petite and I feel a lot more fragile and wobbly now than I did prior to dka and now the vertigo last year. One thing I feel is weak alot of the time, like I'm starving. It is the effect a lot of type 1's have being on insulin- it makes you feel hungry all the time when your blood glucose is up or down, you'r e not getting the nutrients you need. I've started eating more now and when I'm out I plan to have some coconut water and cheese and some other snack as my mid day meal.

    I've pretty much decided against any of those drugs. And going in the sun isn't a great idea for me because I'm light sensitive & very fair from both sides of my family- my grandmother was rehead- I was strawberry blonde and I burn easily. She had skin cancer on her nose in her 80's. I also tend to get sun poisoning now in summer sun. I don't mind small amounts here and there in the late afternoon only is all I can tolerate if it's hot.

  • Please expose your self in the morning sun light for vit D the best way to get. You need 1500mg /day. If not availabe system will take from the bones which will cause all other problems. Calcium tablets 500mg with vit D is required for absorption.

    K.rangaswamy

  • Thanks Ranga, the problem is I"m nocturnal, not up in the morning unless I'm up all night and I'm very fair and at risk for skin cancer. It's also often too cold in the winter to go out when the sun is weaker and I can tolerate it better. I'm thinking maybe some sort of indoor light might work for me but still the risk of skin cancer and other things is a concern. I had read that 500mg is best so I will have to cut my supplements in half. I am going out in the afternoon or late morning to feed some feral cats I care for lately but I don't think its a long enough exposure. My father said you can't be out long enough for it have a significant effect and you need to be totally exposed but I have read even a small portion of your body is enough.

  • oooggg, I've just glanced through your post of three months ago, and I see that Marz and I went to great lengths to explain everything to you, and advise you. Did you take any of that advice? Did you start the Synthroid that you were afraid to take?

    Bones aren't just about calcium. That is a myth. As was said before, taking calcium suppléments can lead to heart problems. For strong teeth and bones you need magnesium, vit D, vit K2, and other vits and mins, and optimal T3. You had none of those three months ago, so it's not surprising your bones have suffered.

    I see you're now taking vit D3 and vit K2, which is good. But, are you taking enough D3? And, how about adding some magnesium to it. And some zinc? But, I really, really wouldn't advise taking calcium suppléments. They're just not a good idea. :)

  • thanks GG, Yes I have overcome my fear-the fear of O& fractures is greater. How do you get calcium then? through diet alone? I don't know if I would get enough that way- I also think due to D and H and other things I have absorption issues anyway... I have added a lot more supplements including magnesium- here is a current list:

    meds:

    25mcg levy

    novolog

    various others such as ventolin as needed, tylenol.

    supplements:

    Slippery elm 1200 mg

    Melatonin 3 mg

    L- theanine 100 mg

    Folic acid 800 MCG

    B12: Methyl cobalamin 5000 MCG

    Calcium carbonate 600 mg vitamin D31000 IU( not taking this one now)

    Calcium carbonate 1000 mg magnesium 400 mg to 15 mg D3 600 IU( started this one 3 weeks or so ago)

    D3 2000+ K2 drops take 4000 daily

    Accu Flora probiotic

    Hyaluronic acid 100 mg

    Reservatrol 250 mg

    Potassium 99 mg

    Selenium 200 mg

    Alpha lipolytic acid 200 mg

    Fish oil 1200 mg times two

    Flaxseed oil 1400 mg

    Lutein 6 mg

    Triple Flex

    CO Q 10 300 mg

    Concentrace mineral drops: contains 250 mg magnesium

    Ginkgo Biloba120 mg

    Biotin 1000 MCG

    Thera zinc spray as needed

    Life Flo pure magnesium oil spray two times per day

  • Yes, you get calcium through diet. And it's not just in dairy products, you know. A lot of veggies contain calcium. And, if you're taking vit D3, that will increase your absorption of calcium from the food you eat. You're taking a lot of calcium, and it shouldn't be in excess of the other minerals. Which it looks like it might be, at the moment.

    That's a hell of a list of suppléments - and I would be interested to know why you take half of them!

    Folic acid isn't good, either. You'd be fare better off taking a B complex with methylfolate. As it is, you're only taking three Bs - folic acid (B9), B12 and biotin (B7) - when the whole lot need to be taken together, and could be taken all in one pill along with your 5000 mcg methylcobalamin pill.

    I'm intrigued by the 'Thera zinc spray as needed'. When and why do you think you need it? Why not take zinc all the time? Why the potassium? L-theanine?

    'Calcium carbonate 1000 mg magnesium 400 mg to 15 mg D3 600 IU'

    Calcium carbonate is an awful thing to take, it's like swallowing rocks!

    400 mg magnesium plus the spray + 250 in the mineral drops? You might be getting a bit too much magnesium, there. Might be an idea to give your list of suppléments a serious over-haul. Why the fish oïl AND flax seed oïl?

    But, please do do some serious research into calcium supplementation. There are some articles that I've posted on here that you can find on my profile.

  • Oh, and you need optimal T3 for your bones. And you won't get that on 25 mcg of Levo. How long have you been on 25 mcg? It's not even a starter dose. You should go back for tests 6 weeks after starting it. :)

  • I just started it this week- I will get my next endo blood work in 5-6 weeks, as well as a scan of my thyroid. It will be the right time to test prolly.. not sure if my endo will increase it though since he didn't want to put me on it in the first place. Maybe now that he sees my whole body is falling apart he will start trying to do something to stop it. I hope so because I don't have the energy to deal with all of these people any more. I do feel a bit of energy boost from it so far and maybe a reduction of brain fog and palpitations. my father was started on that and was ok and he is much worse than me. he has been bumped to 50 mcg now. I'm sure he has O too now which caused his rib fractures and his posture is hunched over too.

    I wonder if my gyn will increase it for me, I will ask him about that.

  • Ah, ok, well, too soon to really feel much difference. I hope your endo will agree to increase. :)

  • Yeah I hope so- I will see what he says.. I feel to exhausted to deal with any of this at the moment. I look like I've aged 20 years in the past 3 weeks or so too. I do actually feel a difference though the past two days not as much but it could be due to all the stress and my sleeping patterns.

  • I've only started the magnesium spray recently and I;m mainy using it as a deodorant but I have read it has a calming effect also. I read last night that you need two parts calcium to 1 part magnesium. you also need potassium for calcium absorption my father says and diabetes or being on insulin depletes potassium- I'm always at the low end. fish oil and flax seed for thinning blood and for dry eye and heart health. I know that veggies have calcium and minerals however not sure if I eat enough of them to get enough. I had stopped it before the thyroid testing but started again after hearing the O diagnosis or maybe had started a week before that for some reason.

    I can't take a b complex because they all have b6 and I have a bad reaction to that with bladder irritation as I do to c in anything other than fruits/veggies/food so I supplement the b12 I listed which is a lozenge and biotin. melatonin/theanine for sleeping. ala is for diabetes it treats neuropathy. triple flex for mobility joint flexibility as well as haluronic acid- also for my eyes... as well as lutein.

    I don't like zinc per say, it causes stomach aches for me but I decided since it's needed for better calcium absorption that supplement I found which has the other minerals needed as well but not too much zinc is a good idea... the spray I used for my reflux sore throat and it works! without a tummy ache so I may use it for the calcium absorption.

    I don't see any problem with my supplements and many of them are on some of the lists people posted here for O/bone building.. such as the triple flex ingredients. I was taking calcium citrate before and I don't notice any difference between them other than this one can be taken with meals or vice versa, another one I found was a gel cap and was easier to swallow.

  • Well, there's no problem - except for the folic acid - you'd be much better off with methylfolate. I just Wonder if they are really doing you any good. You must spend a small fortune on them! Plus, you might be getting too much of some things.

    But, calcium citrate or calcium carbonate, calcium still isn't a good thing to take, especially in such huge quantities. But, up to you. :)

    You can get B complex without B6, you know. Here's one :

    desertharvest.com/shop-new/...

  • I would be easier not to take so many and cheaper for sure- I buy the cheapest ones.. but I do feel they all help me.. some I know for sure. such as triple flex etc. I added in gb because I read it has the blood vessel anti-inflammation effects of a statin without being a statin and all the terrible side effects and for brain fog. Wait till I tell my endo, no I didn't try that other statin but I'm taking ginko biloba instead LOL.

    I read here too much folic acid is bad, but isn't some a good idea? I have to review this again.

    I'm only taking one of those calcium supplements. so 1000mg only but I may look for a 500mg one instead. or try to increase dietary calcium. I'm not even sure what mine is in terms of my food yet. I started almond milk again which has 40% of calcium needs.

    Wow, gg thanks so much for the b complex I have searched for 3 years or more for one without b6 and never found that one! I'm going to order it straight away :-) the only thing I wonder about is the niaciniamide because I was taking that after my d diagnosis- it was a much higher dose for cholesterol levels and the first cardiologist I saw said not to take- it he thinks it causes liver damage so I stopped it.

  • Have a look here :

    livertox.nih.gov/Niacin.htm

    They talk about 500 mg, a lot higher than the 50 mg in the B complex.

    But, here it says over three grams...

    webmd.com/vitamins-suppleme...

    I Don't honestly know, I'm afraid.

  • thanks I will check those out.. I meant to get methyl folate but I forgot and got the spring valley brand. I also forgot to mention that the higher dose folic acid is for neuropathy too, but I wonder if it is making any difference, lol.

  • Yes, but even that would be better with methylfolate. Did you get your Folate tested?

  • I can't remember. I have to check my posts here.

  • Just want to update with my meds and supplements etc, and say that I got some prunes at WF which I love now, I forgot that it's dates I hate, not prunes. I ate nearly 100g today first as a shake with almond milk, strawberries and poppy seeds & which slow the laxative effect. I have a lot of constipation with H and type 1 and so far they seem to be helping me.. it may be a problem on days I teach when I tend to get d from stress and other things. prior to the shake my bg was 156 waking up rose to 175 even with correction when I got up and fed the kitties.. then to 196 when I drank the shake, my tea and supplements. I went for a 1-2 mile walk with ankle weights. bg was 80 and dropping when I got back.I shut my basal insulin off and ate 10g coconut chocolate. bg stabilized and then I ate more prunes with dinner for desert. I will have some for a snack later. I wonder if we have to eat them forever or if a scan shows increased density can we stop and then start again?

    I also did 20 minutes on a stair step base I bought with the ankle weights.

    I went to my ortho doc pa- she did xrays and said there is degenerative decay in the vertebrae in my neck and upper back where I have a lot pain. she rxed lido patches for my elbow and pt and I have to get mris of my neck and back before I can do pt for that due to O now. she said to get a wrist brace which has made my elbow pain better by stopping twisting motions- it's hard to do things with it on though such as type/write. She said for now just don't do things if my body tells me not to so I'm just doing my normal, light activities but avoiding things that cause elbow pain and on that side.

    Here are my coditions/supplements again in case anyone is interested:

    type 1 diabetes/hashimotos/osteoporosis

    25mcg levy

    novolog

    various others occasionally such as ventolin/tylenol

    I may add losartan back in at some point.

    Slippery elm 1200 mg

    Melatonin 3 mg

    L- theanine 100 mg

    Folic acid 800 MCG

    Methyl cobalamin 5000 MCG

    Calcium carbonate 600 mg vitamin D31000 IU

    Calcium carbonate 1000 mg magnesium 400 mg to 15 mg D3 600 IU

    D3 2000+ K2 drops

    Accu Flora probiotic

    Hyaluronic acid 100 mg

    Reservatrol 250 mg

    Potassium 99 mg

    Selenium 200 mg

    Alpha lipolytic acid 200 mg

    Fish oil 1200 mg times two

    Flaxseed oil 1400 mg

    Lutein 6 mg

    Triple Flex

    CO Q 10 300 mg

    Concentration mineral drops contains 250 mg magnesium

    Ginkgo Biloba120 mg

    Biotin 1000 MCG

    Thera zinc spray as needed

    Life Flo pure magnesium oil spray two times per day

  • Sorry to read this. When I was told I had advanced osteoporosis in my spine and femoral neck I couldn't believe it and sobbed for about three days. I have always been active and had a healthy diet and it was only because I fractured my wrist that I discovered I had OP. I am now having tests and ultrasound for suspected primary hyperparathyroidism.

    I note you said you had high calcium and low vitamin D so wonder if you should be asking to have your parathryoids examined as if by chance you have an adenoma (benign growth) on one or more of these glands, the additional parathyroid hormone caused by the growth actually leaches calcium out of the bones, puts it in your blood and can be a cause of osteoporosis, apart from kidney stones, and many other things. I don't have time to read right to the bottom of this thread and my laptop is doing strange things tonight so apologise if you have already looked into primary hyperparathyroidism. It makes you feel really unwell and will copy and paste some of the symptoms below.

    Regards Elaine

    Depression

    Chronic nausea

    weight loss as a consequence

    rapid heartbeat more or less constant

    feeling hot and uncomfortable when it's not hot

    a feeling like a tight corset around the bottom ribs which seems to get worse at night and if I can eat something usually have to stand up eating

    unable to sleep for more than a couple of hours and only with a pill

    usual wake up 3.00 or 5.00 and then just stay awake getting more and more churned up

    desperately fatigued but feeling wired up

    bone pain in knee joint and back, hands anywhere in fact

    osteoporosis

    mild panic attacks

    a feeling of total hopelessness and doom

    no interest in anything

    constantly anxious

    easily agitated

    irritable and impatient

    difficulty in tolerating noise even the radio playing softly

    stomach burning up with acidity

    burping even with still water

    no appetite at all

    odd fads, going from healthy to unhealthy diet

    having to force oneself to try and eat something

  • Thanks Elaine, It is a devastating diagnosis... I'm feeling a bit better now but I still go into panic mode with lots of doom and gloom. I do have hyperparathyroidism, my endo thinks it's secondary to low vitamin d. I had one high calcium in June, pth wasn't checked that time. My last blood work: 69.1 (65), calcium was high normal 9.7(10.1) and vitamin D is low 28 (30). The Norma Parathyroid Center's calcium app says I am high end of possible for primary HPT and the vitamin D app says I'm low end of likely. Both also say it could be true vitamin D deficiency. I guess my increase in vitamin D supplementation to 6000 iu per day will show what is going on. I read that 40% of people with low D, high pth and high normal calcium go on to have high calcium and are actually primary HPT. I guess the vitamin D will bring it out maybe.

    I have been having bad back pain after a pt massage which seems a bit better today so I'm just relieved about that because I was worried she had fractured something. I've never had a fracture in my life. My hematologist says no HRT after a dvt, ever. But he said calcitonin and forteo depending on pth involvment would be ok in relation to prior dvt. Of course forteo is out for now because of hyperPTH. I really hate this because I felt so good when I went on hrt. As soon as I took the first progesterone pill I felt so relaxed and had my first good night's sleep in years. If my diabetes had been properly diagnosed I would never have gone into dka or had a dvt etc. and I could have stayed on hrt indefinitely probably preventing the O completely.

    I've only had signs of hyperPTH recently but I know my osteoporosis developed between 2006 when I had my first normal bone density scan and 2012 when it said osteopenia in the hips and osteoporosis in the spine. It hasn't really changed that much, only by -.2 and -.3 and the hip is still osteopenia.

    I really feel the diabetes, menopause, hashis and now hyperpth are playing a role now though although undiagnosed diabetes and meno were probably more of a factor initially. If it his primary hyperpth at least I have a non drug way to stop or to slow it down.

    Here is some of my other bloodwork:

    PTH

    June: no PTH/ calcium was 10.3

    Oct 26th PTH 57.3/calcium 9.9/ionized calcium=5 top of normal range

    Feb 12 PTH 69.1/ calcium 9.7

    vitamin d went from 30 last time to 28 in Feb.

    I have a lot of those symptoms but not all fortunately... the worst now are fatigue/memory problems, anxiety, constipation and more.. and just feeling blah, depressed, irritable. I have lots of other things going on.. I was very active and healthy diet too and guess what.. it prevented NOTHING. So diet is not the answer, mind you I'm not saying eat whatever etc. of course. Once your hormones go out of whack everything goes to hell. I have felt I'm starving to death since being on insulin/diabetes so I'm eating more now.

    This diagnosis has been the worst although so far it isn't the worst I have to deal with.. diabetes wins that by a long shot. But it is just a huge burden and fear. It kind of feels like the beginning of the end of my life. So so upsetting.

  • Hello 000ggg,

    You certainly have a lot going on with all the other problems and yes you are right you cannot contemplate Forteo whilst you have this pth problem. The only problem with Forteo as far as I am concerned is that they will only give it for two years and then it's the dreaded bisphosphonates which you probably know have nasty side effects plus Merck have so many law suits againt them that they were forced to add hip fracture and dying jaw (I forget the correct term). This is because Fosamax just hardens old bone so you can be standing just chatting not doing anything and suddenly the hip with fracture. I am taking my chances as I my stomach wouldnt tolerate Fosomax anyway. I doubt I would even be offered Forteo as it's expensive and if you live in the U.K. it seems once you are past 60, the Gp's dont want to know.

    After I got over the initial panic of osteoporosis I joined the National Osteoporosis Foundation (U.S.) because the society in the U.K. are about as helpful as the Gp's when it comes to osteoporosis. I thought I had had such a healthy diet eating plenty of nuts etc. only to find that these contain phytic acid which binds calcium so I stopped eating them. I also went on a gluten free diet as much as possible although I am not celiac.

    I was getting very expensive supplements made in the u.s. but obtainable in the u.k. and also someone put me in touch with a very knowledgeable chiropractor in the U.s. who produces his own osteoporisis supplements. He is not a scammer, very well respected and he looked at all my blood test results and helped me a lot. So I thought I was doing fine but the few occasions I go to my GP I always get my blood test printed up as I dont trust them. There favourite is "within the normal range", my most hated phrase now. Anyway, I had to go to see this woman about another problem and she had flagged up my Vitamin D but it was 113 which was really good. When I asked her why she said its not that that I am concerned about but the calcium and she was trying to convince me to chew on 2 x 1500 gms of Adcal 3 a day. I pointed out to her that those were very poor calcium, carbonate in fact, the cheapest and the worst form of calcium and that I was taking calcium collagen along with boron, silica, dried plum powder and Vitamin A (all in the one capsule four times a day). Anyway, she kept on so that I came away from the surgery and thought I will chew on one of these damned things maybe once a week just to keep her off my back. So I get out of the surgery (I had collected my blood tests on the way in but didnt have time to look at them), I sat down in the town and looked at the results to see that my calciuim was over the normal range and she hadnt even noticed, so if I'd have taken 3000mg of the rubbish she was advocating I probably would have ended up half dead or at least with kidney stones.

    So it was then I decided to go down the private route and see an endocrinologist, that was last June. The first thing that happened was they put the pth in the wrong bottle, also lost the ntx bone marker. I then saw her again privately at the Spire hospital closer to where I live, I dont think she had a clue and supposed to be one of the top endos. She said we have to determine if you have primary or secondary but I had high blood calcium so her saying that put me on edge as it would definitely be primary. As the weeks went on it got to end August and a very long story but weeks of horrendous nausea, her sending me for ultrasound suspecting it was gallstone or kidneys, so I said what about my neck, oh yes she said better get that done as well!!!!!!!!!!!!!!!!! That was October the 9th, then I had a sestambi a month later. Very long story I wont go into but secretary kept ignoring my emails, what about my results right up until early December. I ended up in hospital for a couple of days after a fall down the stairs, hospital managed to find out sestamibi came back negative which they quite often do but still no ultrasound report back. In the meantime, I was really ill, my father passed away on New Years Day my daughter was about to have an elected cesaerian and one last time I wrote to the endo in early February please can you give me my results. A new secretary responded and on the 9th February I got my ultrasound results "possible adenoma 8 x 6mm (which is tiny admittedly but I am told by my friend Sallie who has been to hell and back with hpt for seven years and the Daily Mail actually printed her story) can still reek havoc. So from June last year to date all this messing about and £2800 literally down the toilet. Next week I have an appointment in London to see a top parathryoid surgeon.

    Sorry this has rambled on but I had to type it on notepad as for some reason this site I can only type and watch the letters appearing seconds afterwards like you see on movies, lol.

    I have to wear a back support, every bone in my body hurts from the minute I get up until I go to bed. I really don't think if I do have primary hyperparathyroidsm that that has been the cause of my osteoporosis as the latter I fear must have been coming on for years to have got to -3.6 in my spine, probably worse by now.

    Anyway, if you want to join the other 500 of us going through or have gone through misery with hpt and all sorts, please come and join our facebook group created by Sallie. You can have a good moan and share all and it's a private group. Just look for Hyperparathyroid UK Action4Change We have members from uk, u.s. Australia and Scandinavia and are in touch with Parapeeps the three girls from the u.s. who do blogs and podcasts in conjunction with dr norman at the florida clinic.

    Best regards

    Elaine

  • wow,,, what a story.. I'm sorry you went through all of that.. I hope my next tests will show what is going on... I will write more later... how high was your calcium?

    I don't think I had it for years either... if the O starts to get much worse rapidly etc. that could be a sign too...

    I did send my results to the norman center but they charge $1700 just to look at things which is crazy imo. So I will get the next result and then go to a pth specialist near me first and then if it seems to really be hyperpth and is confirmed I will have to decide what to do. Really not looking forward to any of this. I just want to stay in bed for ever and avoid ALL of these people. One of my friends took forteo and calcitonin and said that helped her but she seems to have no idea about the bone density results even though she is retired doctor, lol. So who knows if it really helped or not??? She wouldn't even look at mine. My spine total is -3 I think now on the z score, in 2012 it was -2.7, so not so terrible at this point I think? She is on reloxafene now for breast cancer which helps O too- but it also causes clots. She also had pth surgery for hyperplasia of two glands I think.

    I think most of the antiresorptives mess up your bone making process... calcitonin may be safer because it doesn't inhibit osteoblast collagen synthesis according to this article:

    ncbi.nlm.nih.gov/pubmed/151...

    I'm going to look those supplments up and join those groups... thanks!

    Oh no, I eat a lot of nuts.. another thing I have get rid of? It seems everything is bad, bad bad :-(

  • It is a worry with what to eat and what not to. This is an article about phytic acid. I was only made aware of it because the vile calcium carbonate tablets the doctor prescribed had a warning about not chewing them for a few hours after anything wholegrain. So I thought I would be okay as I eat oats but just out of interest I looked up oats to find they are wholegrain. I think to do it properly it involves a lot of soaking but I have got fed up with it all so I just soak some gluten free oats overnight with milk and water and hope for the best. After I wrote my last post, I saw a familiar looking envelope and thought it was for a hospital appointment. It was a charge of £150 for the dr who so called read my negative sestamibi results last November the 11th!!! He will have a long wait as the NHS hospital charged me £577 just for the scan and I didn't even have a consultation!!

    I'm surprised that the Norman Clinic charge all that because to have the actual operation and including hotel and flights plus a companion from London to Florida it is much cheaper than the charges in the U.K.

    Take care, hope you get the results you want.

    Regards

    Elaine

    precisionnutrition.com/all-...

  • I just can't stand all the dietary restrictions anymore, I'm not eliminating anything else because there is really no proof any of it works anyway. That is interesting about all the phytic acids. They seem to be good for you too though and it's not clear if they will affect O if you're eating other goods foods so I'm going to leave things the way they are for now. I don't eat grains anymore so I think I should be ok.

    I've switched to calcium citrate but now with the high pth I'm a bit worried to take it. I reduced my vitamin D to 4000 because I felt ill last night after taking the 6000 and my bg is spiking a lot lately. I don't know if it is that or the levo or something else.

    I was surprised too that they charged that much, it's just too much for just an opinion on my case, I'm not paying $1700 for that. If I go to another doc all I have to do is pay a copay of $25.

    Thanks Elaine :-) I hope we both get a good result.. it's all so difficult to figure out and live with.

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