On top of everything else I am dealing with, I was devastated to learn today that I have osteopenia – following a bone density scan.
This is the result of NHS failure to diagnose coeliac, which I then had diagnosed privately in 2011; the NHS is only just taking note of it in 2013.
Despite ceasing gluten im Sep 2012, I still have white flecks on my nails and feel like shit.
I have adrenal fatigue/insufficiency, Hashimoto’s, pernicious anaemia, coeliac, chronic neutropaenia, recurring iron deficiency, hypoglycaemia and IBS.
I manage my Hashimoto’s myself as the NHS proved unfit for purpose. I use NDT and now have suppressed tsh – I was kept at high tsh by the nhs for about 5 years.
I am seeing an NHS endo who is trying to get me NDT on the NHS as NHS GP refuses to prescribe. However he wrote and said I should now drop my ndt dose to get a detectable tsh due to the osteopenia. Of course I will do no such thing as I need to be well enough to work, I don’t feel well as it is and know I will feel worse with raised tsh.
Fortunately I have control of my ndt supply and dose.
But what can I do to support my nutritional intake? I have been taking supplements for decades but it clearly made no difference due to malabsorption. Since Sep 12 I have been taking a high strength liquid gluten-free calc,zinc, mag, D combo.
I have pancreatic insufficiency which clearly needs to be addressed as it contributes to malabsorption. NHS GP refuses to prescribe creon. I was taking nutrigest but still had undigested food in stools. Gastro told me it’s not nearly strong enough. He prescribed creon which I just started but obviously when I run out I’m screwed unless anyone can tell me where to source it without script?
I don’t know what to eat anymore as the canned kidney, butter and other beans I used to eat all have traces of gluten. I do not eat meat (any meat whatsoever ie I do not eat flesh - or eggs). So what can I eat to support myself that is gluten free and vegetarian?
I sourced calcium for IV use but have no one to administer it unfortunately.
Bluedaff, osteopenia/osteoporosis can also happen due to low DHEA, also low vit K and vit D.
I take (under dr M advice) 10mg DHEA sublingual daily, she said this is IMPORTANT for my osteopenia, high vit D and multivitamins (including K), I also take 'strontium citrate' daily and have done for over a year now.
I had osteopenia diagnosed 'before' hypothyroidism was diagnosed, I have SEVERE malabsorption (probably why I need such high doses of thyroid hormones as Dr M cannot find any other excuse), the above were recommendations from Dr M including the strontium and she strongly advised me to follow a paleo diet too.
I am due my dexa scan this october, I hope all these recommendations have improved my bone density, I will surely blog about it in october.
my endo also keeps banging on theoritical dangers of suppressed TSH and osteopenia, however I keep reminding him my osteopenia was there BEFORE I was treated as hypothyroid and it was there due to malabsorption. I keep fighting him to not lower my dose and so far have succeeded.
At the end of the day if you are not happy reducing don't, you know your body and if you don't feel over treated then fine, tell him this.
also please, just because you have malabsorption it doesn't mean you have to hook yourself up to IVs all the time!
as I said, I have severe malabsorption, and dr M does not tell me I need IVs!
also she does not tell me to supplement calcium, her high dose multimineral supplement has 500mg of calcium, I used to be on 1200mg from GP so she has actually LOWERED my calcium intake and advised me not to have any dairy products, calcium is not the answer to your osteopenia.
and I hate to say this: but you are not doing yourself any favours by being vegetarian, it's fine if you want to be, I am just saying : why make your life even more unbearable??? you have a condition and are struggling to be well and you want to make it even harder on yourself? to me it does not make sense. I used to be vegan for years and years not anymore. I have to look after myself, no one else will.
Many thanks for giving your input. I actively avoid DHEA because it either contains soy and/or is phyto oestrogenic (cant quite remember) and I have a history of fibroids so need to avoid.
As i said, i've been taking supps for 20 years now so I dont think there's any sense in rushing out and buying yet another multivit.
I believe in injections and IV because as my private GP says - you need to bypass the gut to get it in
I hate meat, I vomit when i even smell it, same with eggs. I have not eaten it for about 30 years. I literally cannot stomach it. If i could i would start eating it tomorrow
the DHEA I have does not have any soy, if taken at low physiological doses it will not increase oestrogen levels. I am not prescribing it for you, I was just giving a pointer.
I also had a huge/obsurd repulsion of meat but I am eating it now.
There is also other doctors who think you do not have to have IVs (like Dr M) of course you put your trust in the doctor you want to, I chose to put my trust in Dr M, her advice is working wonders for me and I am happy I can avoid regular hook up sessions with IVs. But you have to go with what you like/trust, if that's the approach you prefer then that is what you prefer, in which case I have no advice to put your way as we go about things in totally different ways.
Hi Bluedaffodil, you certainly have a lot going on there! You say you have a suppressed TSH, but as we so often say on here, TSH is not a very good test and doesn't necessarily reflect thyroid status. More important are your frees. Have you had your FT4 and FT3 tested? How is your T3? It is good that you are taking NDT because that will give you the calcitonin you need. But might it not be possible that you need a slight increase in your dose? Because it sounds like you still have a lot of symptoms. Never mind your endo saying you need to decrease, he's only going by the TSH and that, as I said, is meaningless.
As to your diet, I can understand your dilemma. I don't like eating meat, either, I do occassionally but... Fortunately I love eggs, but I often find myself at mealtimes wondering what on earth I can eat. So many things I don't like. But, you know, I do try to avoid tinned foodstuffs. I always have my doubts about them. I far prefer to get dried beans and soak them and cook from scratch. Sure, it takes longer, but at least I know I'm not poisoning myself! lol How about chick peas? They are so good curried - not a hot curry, just a gentle explosion of different tastes.Or fried and salted as a snack (must insure that you get enough fats when you don't eat meat, you could fry them in coconut oil which is good for you). And what about lentles? They don't need soaking and lentel soup with a slice of lemon is fantastic. Or pea soup from dried peas.
The only trouble with these legumes is that they are all goitrogens, so monitor yourself carefully to make sure your hypo symptoms aren't increased after eating them.
As nobodysdriving said, calcium supplements are not the answer. My doctor warned me off them, and warned me off dairy, too (but I do like cheese! and cream...). He said it was a myth that you can only get calcium from dairy, there was quite enough in various vegetables, and that an over-dose of calcium was countre-productive and wouldn't necessarily mean that you avoided osteoporosis.
Lots of hugs, Grey
Hi, my t3, t3 and rt3 are all fine. Endo was fine with suppressed tsh until osteopenia came up.
Just to set the record straight, I had an iron IV on the recommendation of a professor at Kings. That is the only IV i have ever had. I inject b12 because i have pernicious anaemia. I do not have regular IVs, only ever had the one for iron.
Chick peas and lentils are contaminated with gluten sadly. I used to live on both. I found that even the organic lentils are produced by crop rotation with wheat. I was eating all the beans i like and the lentils and getting coeliac symptoms, took me a while to figure it out.
So i literally dont know what to eat anymore. I am living on potatoes. I enjoy food and eating well - or i did until i had to avoid gluten.
The dried peas are also gluen contaminated sadly.
I've not yet been able to find a brand of these foods that is not contaminated in production despite posting on coeliac sites
Um, don't want to be difficult, but 'fine' is not a medical diagnosis. Do you have the exact figures? If not, ask for a print-out, you need to know exactly where you are - not just 'fine'! And to keep your own records for reference. I'm afraid you just can't trust them to be fully open with you.
So he doesn't know that a suppressed TSH has nothing to do with osteopenia? Or anything else, come to that. If you're taking your thyroid hormones orally, you don't even need any TSH.
Sorry, I'm afraid I don't have any more suggestions about food. I didn't know about the gluten contamination. I didn't know it was possible.
Years ago I was reading an article by Dr. Jon Barron and he said progesterone can grow bone or without sufficient you cannot grow bone. There is a lot of evidence that we become estrogen dominant and progesterone can help to counteract that. Also our progesterone is used by adrenals to make cortisol under certain circumstances.
It does seem odd that it is usually thought that the lack of estrogen is what causes osteoporosis but since that comes from the mainstream medical........
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