Osteoporosis diagnosed, GP does not know I am taking NDT

Hi All,

Results of my latest bone scan just arrived with my GP - osteoporosis of the spine. I recently started NDT and all the vits / minerals that go along with healthy thyroid function but I haven't told my GP. Now I need to go in for blood tests, and treatment for the osteoporosis will most probably be suggested.

So now I have the quandary of whether to tell my GP about the NDT but I do not feel up for the stress if GP gives me grief about it? Does anybody know of any osteoporosis meds that will interfere or interact with the NDT? For the first time ever I am taking a comprehensive range of nutrients, eg. vitD, b12, folate, iron, magnesium manganese, Bvits, zinc, and more. Will that be enough to strengthen my bones without the osteoporosis meds? Does anybody have experience in this area? I must admit I feel a bit shook up and didn't need this, just when I had got to grips with self-medicating my hypo condition.

Thanks,

June

45 Replies

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  • Hi June25, I was also diagnosed with osteoporosis recently. You will probably be prescribed Aladronic acid and calcium tablets and as far as I'm aware neither of these react with NDT.

    One other supplement you may like to add is K2. It's biological role is to help move calcium into the proper areas in your body, such as your bones and teeth.

    Hope this helps a little x

  • Hi julesdawn

    Helps a LOT thanks. I am a bit freaked out by this and glad to be able to talk to somebody who has been there. I need to be informed before sitting in front of the GP and agreeing to something I will regret later. I forgot to mention, I am already taking K2.

    June

  • I believe there is a new drug recently approved for use in osteoporosis, I think it's called Binosto. I've just taken myself off Aladronic acid (it's a weekly tablet) because I think it may be contributing to my hair loss. My endocrinologist won't prescribe anything else until I see whether it is or not. I think it is the cheapest tablet for the NHS to prescribe and you can only take it for 5 years.

    It is hard to get your head around I know but rather you find out now than in a few years when you break a bone.

    I suggest you do a bit of research regarding the drugs available to treat osteoporosis rather than just accepting Aladronic acid. I didn't have a clue when I was diagnosed.

  • I looked up Binosto. It is alendronate sodium trihydrate. Is that not much the same as aladronic acid?

  • Hi julesdawn

    I was diagnosed with Osteoporosis recently in my spine and osteopenia in my hips...my oncologist did forewarn me of this as a side effect of levothyroxine..i have been on T4 since 2004 but in the last two years changed to NDT...as they are aware this is a common side effect of levo they need to think outside of the box and realise that maybe NDT is a better alternative for us as its natural (apart from the fillers).

    Am sorry you have had this diagnosis ..like others have mentioned you just need to research well..i was on calcichew until i researched that you should take K2 with it as it goes into your blood and needs to go into your bones...strangely the doctor didnt tell me this????

    Then i researched K2 and found there could be some problems with this too!!

    My sister is on the acid as she too has osteoporosis (we are relatively young! (51 and 53) and she is okay although she has no thyroid problems but does have parathyroid problems.

    I cannot obviously advise you either way as i am not a professional obviously but just to say that research is key and then you can make an informed choice.

    My choice was to stop the calcichew and K2 and up the calcium in my diet...I also understand that weight bearing exercise is very important to keep your bones healthy.

    Its all very complex and i do wish you well with this! X

  • p.s. i would tell your doctor you are on NDT...Its your choice and if its making you feel better he should support you! When it comes to testing your bloods he/she also then put T4/T3 need testing as you are now on both!!

  • Hi Sesbo,

    Many thanks for your reply. I am sorry that both you and your sister also have this diagnosis. I agree about research. I currently do so much of it I wish that there were more than 24 hours in a day! These things are indeed complex. I haven't come across anything so far to suggest problems with K2 though. Do you have a link to more detail about that please?

    June

  • Hi

    I think its something to do with the clotting factor in our blood...i will have another look and try and find out where i saw it!

  • 10. Who Should NOT Take Vitamin K?

    If you are pregnant or nursing, you should avoid vitamin K2 supplementation higher than the RDA (65 mcg) unless specifically recommended and monitored by your physician. If you have experienced stroke, cardiac arrest, or are prone to blood clotting, you should not take vitamin K2 without first consulting your physician.

    If you do not fall into these categories it appears that K2 is excellent for osteoporosis and other conditions!!

  • Ah, many thanks for highlighting that issue. There's something about it in the article that Marz posted which I'll re-post here

    drmyhill.co.uk/wiki/Vitamin...

    Definitely needs to be taken into consideration,

    June

  • Hi...interesting article! there is reference to helping with heavy periods..i have ordered some K2 again as i feel the benefits are very good..plus i have hideous periods due to fibroids and am on blood clotting tablets..so maybe the K2 would be preferable!!

  • Hi June

    I do apologise i confused you with julesdawn! i hope you realised i meant you in my reply...oh dear i get easily confused am afraid !!!

  • No problems. I understood you meant me and I was glad to hear from you. Your information has been so useful thanks,

    June

  • I was on calcichew Sesbo but stopped when I discovered it has aspartame in it.

  • For good bones you need good levels of T3. Do you have any recent labs?

  • Hi Greygoose,

    Before I started NDT (5 weeks ago)

    FT3 4.17 (3.100 - 6.800)

    Latest test yesterday 2:00 pm after taking 1 and a quarter grain thiroyd at 7:30am

    FT3 6.91 (3.100 - 6.800)

    The bone scan was done before NDT and before starting any vits/minerals.

    Your help welcome,

    June

  • Do you have your TSH? It is this that the doctor is most likely to react to if it is out of range.

    You should find this interesting - sadly it is only an abstract but it gives you information you could research separately :

    tandfonline.com/doi/abs/10....

    To do further research you could use Google Scholar :

    scholar.google.co.uk/schhp?...

    or Pubmed :

    ncbi.nlm.nih.gov/pubmed

    For help on how to search Pubmed, see this document by member/Admin helvella :

    dl.dropboxusercontent.com/u...

  • Hi humanbean

    My tsh before NDT was 1.88 mIU/L (0.270 - 4.200)

    but the blood was drawn at 2pm so this is likely the low point

    My tsh yesterday was 0.204, same range, after taking NDT in the morning.

    So you make a good point. If I'm not telling the GP about the NDT then I need to stop the NDT day before and go for bloods early morning. How very tiresome.

    Thanks for all the info re. nutrients. But is it now too late to repair my bones enough, no matter what nutrients / T3 I can get into it?

    June

  • I don't think it is too late. The body can always be improved unless you are on your death bed! You might want to look into how to improve your gut health so that you can maximise absorption of nutrients from your food.

    What kind of diet do you eat? Do you take lots of antacids or PPIs or zantac/ranitidine?

  • Oops I inserted my last reply to you into the wrong place, sorry. You'll find it down a ways, starting "Gut health".

    June

  • drmyhill.co.uk/wiki/Vitamin...

    drmyhill.co.uk/wiki/Osteopo...

    A friend of mine has recently adopted her protocol ....

    Hope all goes well.

  • Marz

    I've had a quick scan through the articles you sent and I'm so happy to get this practical advice on things that I can do. And just when I thought the NHS might actually be of some good to me I find that they are dispensing a toxic version of strontium! My view of this is unprintable.

    Feeling a little less freaked out now. Ever grateful,

    June

  • Gut health, yes. I am not coeliac but I am gluten intolerant. I seem to have had so many health issues recently that this one is on the list but not yet my number one focus. You are right to bring it up though. My diet is good in that I avoid processed foods, eat healthy fats, etc. but always room for improvement. Don't take any digestive meds except digestive enzymes and betaine+pepsin to increase stomach acid. So I'm trying.

    I think I've been undiagnosed hypo for 3 decades. I've just become aware of this and the lack of vital nutrients since joining this forum. It seems that now at age 66 it is all catching up with me. If only I could have learned all this a long time ago. IF only eh...

    Now working overtime to repair what I can,

    June

  • I was diagnosed with premature oesteoporosis at 27. They were never able to find a cause for mine but I was prescribed calcium tablets (with Vit d) and I take estrogen due to hormonal issues. I beleive there are different treatments available for to treat this but I think it depends on the cause. I know there are injections available and I think there are infusions available but I don't know how they determine individual treatment. If you are offered tablets you can check online if there are any interactions with other meds

  • Oh dear, what a shock for you to get this at such a young age. Many thanks for your reply. It does seem like hormones can play a useful part. Marz's info mentions DHEA and pregnenolone which may be more suitable for post menopausal women, but an expert I am not! 3 months ago I knew nothing about any of this. It's been a steep learning curve. Well, maybe I should count my blessings to have caught my various maladies before I landed in A&E.

    June

  • You can improve your bone density, this may take several years, whether or not you can totally reverse it I don't know. My bones did improve even just after three months on calcium and Estrogen (I think it was more so the Estrogen tho tbh). Mine keep going bad again tho, they still need to find the cause of mine, and I think maybe then I might be able to sustain some long term improvement. (I may have adrenal/cushings) so that would explain things. Vitamin wise (calcium/vit d/magnesium/K2) all good for bones.

  • Well, that's great to hear. I'd be happy with any improvement. I wasn't aware of osteoporosis with adrenal issues (which I have) so that's a very interesting connection that I'll have to pursue. Maybe when I get my cortisol under control it will help. I wish you all the best in getting to long term improvement with your bone density. If only these issues did not take so long to deal with.

    June

  • I'm not sure if your using steroids to treat you adrenal problems (as these can causes oesteoporosis) when taken ongoing/long term. cushings syndrome in its own right can cause oesteoporosis. Mine has been caused by an ongoing undiagnosed illness which now appears to be pointing in the direction of addisons/cushings. Only from experience I can say Estrogen has been brilliant in terms of improving bone density. You may need enquire about injections/infusions. (I don't think they're offered as first line treatment) I know I will be asking to see if I'm eligible for this due to the bad state of mine. Thank you so much, I wish you all the best too. Please keep us updated regarding this

  • Hi Christina,

    I'm not using cortisone if that is what you mean by steroids? I am using pregnenolone and DHEA for my adrenals but had planned for that to be short term only. Both of these can be broken down by the body to form oestrogen and the pregnenolone can also form progesterone, so I am hoping that these will be helpful. I'm not aware of issues with either of these and osteoporosis, even if used carefully long term. What do you think?

    June

  • No they should be fine. I meant as in replacement steroids, for suppress the immune system etc. I'm pretty sure replacement dhea etc would be fine. Usually they shouldlook

  • Sorry (hadn't finished typing then) usually they should look for a cause for why you have oesteoporosis. Can I ask are you of menopausal age yet? Or do you have any issues with those hormones at all in any way?

  • I am 66 and post menopausal. I was warned years ago at the menopause clinic that I could get osteoporosis because of my early menopause, hence I badgered my GP for a bone scan. So unlike you it's no mystery and not all that unexpected. But still a freakout that it's finally arrived. So I am almost certainly low on the sex hormones and plan to get tested for them in the near future as part of the DHEA and preg. treatment.

    June

  • I'm sorry to hear you went through an early menopause. We're you offered hrt at the time? Obviously it's an individual decision and I know everybody is different. You no doubt will be deficient in Estrogen now that your post menopausal. This will probably be the cause of it, don't be too alarmed by it, that said it could be a mixture of everything that's going on, but the important thing is, is to try and get your bone density up, even to an oesteopenia range would be something. I'm working on mine as mine are oesteoporosis again now, I'm going to enquire with my endo specialist next week about the most effective approach, so I will keep you updated and if you could do the same? (That's if you don't mind ofcourse) If you are offered calcium tablets then you would need approx 1000-1500mg per day as well as sufficient amounts in the other vitamins and minerals.

  • I took HRT for 7 years. That was a while ago. I would be very happy if I could get my bone density up to osteopenia range again. I'm happy to know that that is even a possibility. I'd be very interested in what your endo says about the most effective approach - of course it may be different for me being post menopausal. I would be happy to keep you updated but I don't expect to learn anything at the GPs that you don't know already. My expectations of meeting with her are very low. I won't even bring up anything to do with hormones as I'd probably just get a blank look. I probably won't accept any meds that she has to offer - just get copies of all my labs and the bone scan and ask for another scan in 2 years.

    June

  • I have had a total hysterecotomy when I was 28 (hence on Estrogen now) In all honesty I have no intention of ever coming off it (from the womb until the tomb) for me ideally. I know it gets a bad rap but we are living a lot longer now, and despite its bad rep Im pro Estrogen. (And I take bio-identical gel) so I feel im taking the very best form of it. It's done wonders for my health. I know how you feel regarding visiting GP's. I have had the same problem in the past. They won't advertise different treatment options so to speak unless you enquire and sadly push for things. At the very least though they should offer you calcium tablets. I will report back to you once IVe seen my specialist and I will ask about everything treatment wise and get as much info as possible.

  • I would really appreciate that Christina. I hope you have a productive meeting with your specialist. By the way, does the NHS supply your oestrogen? I might supplement with progesterone cream at some point in the future so I'm interested in a supplier of good quality. Probably best to pm me if you have one.

    Thanks,

    June

  • I cannot answer your question but NDT does have calcitonin in it. I would have thought if you take other osteo meds well away from NDT would be o.k. but I'm not medically qualified and don't know what your prescription will be for osteo:- Extract:-

    How Does Calcitonin Work?

    Calcitonin works to control calcium and potassium levels. It does this by inhibiting the activity of the osteoclasts, the cells that break down bone. When the osteoclasts break down bone tissue, the calcium enters the bloodstream. By preventing the breakdown of bone, calcitonin lessens the amount of calcium in the blood. The hormone also seems to decrease the amount of calcium the kidneys can re-absorb, lowering levels further.

    Secretion of this hormone is controlled directly by the blood’s calcium levels. When the levels start to increase, the body responds with increased calcitonin levels. When calcium levels drop, so do calcitonin levels.

    What Can Go Wrong with Calcitonin?

    Calcitonin is a unique hormone, because its importance is not well known. While doctors know what it does, they do not understand why we have it, and few symptoms occur if levels are high or low. The body appears to function normally, even with high or low levels of this thyroid hormone. In fact, patients who have had their thyroids removed will have virtually no calcitonin levels, but they show no resulting symptoms.

    Sometimes high calcitonin levels can point to a rare type of medullary thyroid cancer. This cancer, which starts in the C-cells, can be connected to multiple endocrine neoplasia type 2b and multiple endocrine neoplasia type 2a. However, the calcitonin levels do not cause the cancer, but merely serve as a symptom.

    hormone.org/hormones-and-he...

  • Thanks for this great info shaws. So it looks like I am doing the right thing for the osteoporosis to be getting calcitonin and T3 from the NDT. I have never tried levo, just because the action of NDT seemed to me to be more similar to how a healthy thyroid works. Good to have some reasons now that NDT is preferable for me - so far anyway. Will note this info just in case of any future run ins with the GP.

    June

  • It's amazing what they don't know and we all have fallen victims if we don't get well on levo but on do so on NDT or T3 only. Or even the addition of T3.

  • On that note, how long do you think I should stop the NDT for before getting the GP's blood tests? The last thing I want is a GP freaking out because my tsh is too low.

    If I don't take the NDT on the day and fast and go early for the blood draw will that be enough? I'm not sure how long it will take for my tsh to elevate again?

    Currently 0.204 mIU/L (0.270 - 4.200)

    June

  • Just be aware that biophosphonates like Aladronic acid give you dense brittle bones that are actually more prone to breaking (and more serious breaks when they do) because they prevent both the breakdown of old bone AND the formation of new bone. Alos might give you phossy jaw, cancer of the esophagus and nausea, bloating etc. Weight bearing exercise and K2 should help.

    See lmreview.com/articles/view/...

    lmreview.com/articles/view/...

  • Hi Angel,

    Thanks for the great info, especially on calcium which seems to be the most controversial supplement, or maybe I should say it is just complex to get right.

    I already decided that the biophosphonates are not for me. In fact, the only contender that I can see right now is strontium. I went ahead and ordered strontium citrate having read in the excellent article that Marz posted that the NHS strontium formulation is toxic! You really couldn't make that up eh. But I'll still ask for the NHS supp, just to see what I get and if it is usable. I'm spending a small fortune on supps at the moment. I'll also see what form of calcium the NHS supply nowadays. My mum used to get those large round fizzy pills. She ended up with gall stones but I don't know if those pills were to blame or not. What a minefield. I was just getting on top of the hypo thyroid and now a whole new learning curve.

    June

  • Hi June Ive not been on here for a while and I see you are now taking NDT.Would you tell me what benefits you are feeling, just so I can evaluate my own use of NDT.Confused as ever Debbie ps Thank you in advance.

  • Hi Debbie,

    I'm in week 6 of NDT and taking 1 & a quarter grain. I really can't tell you much because it's not been long enough, also I probably need to increase some more. This morning though, for the first time, I found myself cleaning the kitchen and bathroom and mopping the floors, so I'm hoping that's a sign I'm getting more energy. Sorry not to be more help.

    June

  • Thank you for answering,please keep me updated now and again and hope you continue to improve.

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