Advice on halting bone loss following Dexa and ... - Thyroid UK

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Advice on halting bone loss following Dexa and hrt or other supplements.

Maztee profile image
29 Replies

Thyroid cancer at 23, high dose T4 requiring propranolol for 17 years, then battles over dosage post menopause as rules changed. T3, when measured, always seemed to be at a good level. I didn't take HRT as it was at the height of the cancer scare. I regret it now. Sjogrens and very low vitamin D diagnosed 10 years ago after 4 or 5 years on too low a dose of levo (imo). I took up to 5,000iu vit D, but when monitored it only went from 23 to 73 after 5 years. Had a regular battle with various gps about high blood calcium (2.61 above high range of 2.6) so told to reduce vit D over last 3-4 years although new endo last year said it was ok.Also had parathyroid hormone checked and that was 5 which endo described in her letter as 'normal'.

They really wanted me to reduce levo to 150mcg too but life isn't worth living on that dose.

I'm now on 150/175mcg alternate days and most recently:

T4 is 21 (ref 12-22) and TSH 0.2 (0.27-4.2). I still always take vit D 2000iu in autumn/winter/spring. My latest Dexa scan shows I'm osteopenic. Suggestion is I get more exercise, stop smoking, eat more dairy and/or take calcium and vit D!!! This is general advice, it's not even a personal letter.

Although I have Sjogrens which makes me exhausted and achey frequently I pace myself but am not inactive by any stretch of the imagination as I garden obsessively and I walk the dogs most days and am generally very active. I don't smoke. They already get anxious about me taking vitamin D! It's all so confusing.

I feel that as time goes by I have more conditions and less clarity as to how they affect each other. I also have very high cholesterol (9) and have tried all the statins but had severe muscle pains or other side effects.

I am concerned about bone density and would like to take some form of HRT or other supplement protect my bones further but I am aware that the gps will probably laugh at me as I'm now 69 (although friends in their 60s are on it) so I need proof or a private source and advice if I am to go down that route.

Also last vitamins I had tested were as follows:

Ferritin 113.4ug/l (range 33.00-400ug/l)

B12 374.2 ng/l (range 180-900ng/l)

Folate 6.77ug/l (2.50-19.50ug/l)

I can see that those are low but they're marked as normal-no action.

I have been taking Vitabiotics Immunace Extra during this time which has very high doses of B vitamins 1, 2, 3, 6, 9, 12 plus C, D, K, selenium, zinc and other vitamins and minerals. B12 is Cyanocobalamin but I have Methylcoblamin separately so take that too. The brand is due to budget but I have recently started researching again to see what the best supplements to take are.

I would appreciate any insight or recommendations for supplements which can get my cholesterol down, increase bone density, and otherwise make me as healthy as I can be! Thank you 😱

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Maztee
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humanbean profile image
humanbean

Make sure you are taking a good level of magnesium.

ncbi.nlm.nih.gov/pmc/articl...

Abstract

In 2009 EFSA Panel concludes that a cause and effect relationship has been established between the dietary intake of magnesium (Mg) and maintenance of normal bone. After 2009, numerous studies have been published, but no reviews have made an update on this topic. So, the aim of this narrative review was to consider the state of the art since 2009 on relationship between Mg blood levels, Mg dietary intake and Mg dietary supplementation (alone or with other micronutrients; this last topic has been considered since 1990, because it is not included in the EFSA claims) and bone health in humans. This review included 28 eligible studies: nine studies concern Mg blood, 12 studies concern Mg intake and seven studies concern Mg supplementation, alone or in combination with other nutrients. From the various studies carried out on the serum concentration of Mg and its relationship with the bone, it has been shown that lower values are related to the presence of osteoporosis, and that about 30–40% of the subjects analyzed (mainly menopausal women) have hypomagnesaemia. Various dietetic investigations have shown that many people (about 20%) constantly consume lower quantities of Mg than recommended; moreover, in this category, a lower bone mineral density and a higher fracturing risk have been found. Considering the intervention studies published to date on supplementation with Mg, most have used this mineral in the form of citrate, carbonate or oxide, with a dosage varying between 250 and 1800 mg. In all studies there was a benefit both in terms of bone mineral density and fracture risk.

This paper is open access.

.

Boron is supposed to be good for bone health as well :

betterbones.com/bone-nutrit...

draxe.com/nutrition/boron-u...

.

Potassium is supposed to be good for bone health as well :

betterbones.com/bone-nutrit...

ncbi.nlm.nih.gov/pmc/articl...

Potassium is not a supplement to take lightly - it can cause heart arrhythmia in too high a dose. But eating potassium-rich food is a good idea.

.

The one thing that doctors usually recommend - calcium - is required but as a personal comment, I wouldn't take it because my calcium levels are always high in range when tested, and too much calcium can end up lining the arteries.

.

For more info on bones see these websites :

betterbones.com/

saveourbones.com/

Maztee profile image
Maztee in reply to humanbean

Thank you very much for the information. I have had a quick read of the articles you've sent and I will act on the recommendations and do further research. I will make sure I take magnesium daily as I've been on and off with it.

Fruitandnutcase profile image
Fruitandnutcase

Hello Maztee, it would be worth joining the HU site Bone Health for more information about bones. It’s good that they say you are still osteopenic rather than full blown osteoporosis. Do you know what your At scores are?

I have osteoporosis - I don’t take the ‘official’ osteoporosis drugs because the side effects were too much for me but I take vitamins and minerals. I take

D3, 3000IU,

I top up my dietary calcium with one seaweed based calcium capsule because I normally get a lot of calcium in my diet - some people don’t like seaweed based calcium but it agrees with me unlike calcium carbonate. It also contains 72 trace minerals - I’ve got a list of them somewhere.

I take magnesium, boron, K2-Mk7 to direct the calcium to my bones rather than the bloodstreamOmega 3 / DHA capsule

A good website to look at is melioguide.com

Also look at the Royal Osteoporosis Society's website, you will find loads of information on there. theros.org.uk

I had Graves disease - and I found that when my TSH was really low so was my cholesterol - now I’m in remission my TSH is creeping up and so is my cholesterol. I pointed out to my GP years ago that I thought there was a link - there is - but I was within the range so of course nothing happened - I tried statins many years ago before anything was known about side effects etc and I had dreadful muscle pains - I went from walking miles every day to not being able to walk to the bus stop across from the camp site we were staying on plus they made me feel really depressed so now I try to eat a Mediterranean diet and I try to keep my blood sugar down too in the Hope that my cholesterol will drop too.

Maztee profile image
Maztee in reply to Fruitandnutcase

Thank you very much for your reply, I really appreciate it. I've quickly visited the sites you suggested and will look in more detail later. I will definitely do more weight bearing exercise although I do adequate in terms of dog walking, often on hills. I've signed up to a fun weekly Latin dancing class instead of pilates this term! Re: 'I take magnesium, boron, K2-Mk7 to direct the calcium to my bones rather than the bloodstreamOmega 3 / DHA capsule'

Does this come in one capsule or all separately? And why not omega3 which I have also been taking or could one take both?

With regard to Tsh and high cholesterol I'll have to check my records as it's not something I'd noticed! That would be interesting if so!

And statins - it makes me mad that the medical profession/ pharmacists now seem to be blaming the patient for not taking them properly and riding out the painful weeks! The pain is so bad that I was lying in bed at night thinking I must have broken my pelvis - it was unbearable. And, like you, I could barely walk, whereas I was a botanical surveyor at the time striding out over hill and dale all day long in remote farms. Luckily the consultant saw the pain I was in. He said I had the genetic high cholesterol. There wasn't much else to be done as he said diet wouldn't make a huge difference.

Yes the Mediterranean diet seems to be the best and I do my best with it. Thanks again 🤗

Maztee profile image
Maztee in reply to Fruitandnutcase

Here are my T scores and Z scores, with no explanation from GP: Lumbar: L1-L4: T= -1.2; Z=0.8

Femoral neck L: T= -1.9; Z= -0.2

Total hip L :T= -1; Z= 0.5

Fem neck R: T=-1.7; Z= 0

Total hip R: T= -0.8; Z= 0.7

All classified as osteopenic apart from the last total hip R which is 'normal!

It's just not clear to me. Another scan in 5 years so I guess I need to work at improving those figures (if I'm still here)!

Not sure if you can make sense of them?

SlowDragon profile image
SlowDragonAdministrator

T4 is 21 (ref 12-22) and TSH 0.2 (0.27-4.2).

You need to test TSH, Ft4 and Ft3 together

Would suspect Ft3 on low side

Vitamin levels need improving

A good quality daily vitamin B complex

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

Magnesium

Propranolol tends to lower magnesium as lowers Parathyroid levels

labtestsonline.org.uk/tests...

Drugs that may decrease PTH include cimetidine and propranolol.

Daily magnesium (in afternoon or evening at least 4 hours away from levothyroxine)

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

greygoose profile image
greygoose

My latest Dexa scan shows I'm osteopenic.

At your age you can expect to be! You can't expect to have the bones of a 20 year-old when over 60. But, that doesn't mean it's a problem.

healthunlocked.com/thyroidu...

Suggestion is I get more exercise, stop smoking, eat more dairy and/or take calcium and vit D

Bad advice about the calcium. Calcium supplements are not well absorbed and tend to build up in the arteries and soft tissues. Highly unlikely you're deficient in calcium, and taking vit D increases absorption of calcium from food - which is why we need the vit K2-MK7 to make sure it goes into the bones and teeth and doesn't build up in the arteries.

Calcium is neither a cure nor a treatment for osteoporosis - which you don't even have. Magnesium is far more important for bones - which you should be taking if you take vit D, because the two work together.

They already get anxious about me taking vitamin D!

Why? Do they even test your levels? No problem with taking vit D if it's not over-range, as long as you take vit K2-MK7 and magnesium with it.

I also have very high cholesterol (9) and have tried all the statins but had severe muscle pains or other side effects.

Statins are not recommended for hypos or for women. High cholesterol is usually a symptom, not a disease (unless it's genetic). If you know you're hypo then the problem is probably low FT3 - or too low for you, anyway. But, the problem is not the cholesterol itself - it won't cause heart attacks or strokes, and people with high cholesterol tend to live longer - the problem is the low T3.

And, it's a contradiction in terms to take HRT whilest taking statins. Statins will lower your natural production of sex hormones. So, rather than taking HRT, just stop the statins.

Ferritin 113.4ug/l (range 33.00-400ug/l)

B12 374.2 ng/l (range 180-900ng/l)

Folate 6.77ug/l (2.50-19.50ug/l)

I can see that those are low but they're marked as normal-no action.

They are marked 'normal' because they are all vaguely within the range. Doctors don't understand that the ranges are too wide, etc. They are not trained to interpret blood test results. So, ignore that word 'normal', it's meaningless.

As you have been hypo for a long time, you probably have low stomach acid, which prevents you digesting food and absorbing nutrients correctly. Do you have acid reflux or other digestion symptoms? Age and low B12 will also lower stomach acid production, as will low salt intake. Do you get enough salt? The best thing you can do is try raising your stomach acid level - even if it's just taking vit C before meals. But, increasing your B12 and salt intake will also help.

I have been taking Vitabiotics Immunace Extra during this time which has very high doses of B vitamins 1, 2, 3, 6, 9, 12

Yes, but... It also contains iron which will block your absorption of the vitamins. Which is why it's not raising your levels.

It's a very bad supplement for other reasons, too. It contains:

* folic acid rather than methlyfolate - folic acid is the least bioavailable form of folate

* it doesn't tell you what forms the other ingredients are but they are probably the cheapsest, and therefore the least bioavailable forms - never trust a supplement that doesn't give you all the details upfront

* it contains iodine which you really do not need given that you have no thyroid, and are therefore not making thyroid hormone, and that you are getting iodine from your thyroid hormone replacement - no point in paying big bucks for things you don't need

* it contains both zinc and copper - these two need to be kept balanced, but hypos are usually high in one and low in the other, so you need to get them tested before taking any of either - taking more of the one you are high in is not going to help and could make things worse.

These are just some of the reasons we never recommend multi-vits on here.

I would appreciate any insight or recommendations for supplements which can get my cholesterol down, increase bone density, and otherwise make me as healthy as I can be!

Right, so, for a start: forget the cholesterol and concentrate on getting full thyroid testing so you know what's going on with your FT3. Good levels of FT3 are also very important for healthy bones.

Invest in a good B complex, as per SlowDragon .

Get a full iron panel done.

Take magnesium and vit K2-MK7 with your vit D.

Get more nutrient testing - nothing is going to help if you don't need it, and could make things worse - copper, zinc, vit A, vit E, selenium vit D, calcium... No-one can recommend supplements if they don't know your levels. :)

Maztee profile image
Maztee in reply to greygoose

Thank you for your reply, I'm still getting my head round it all and will take your advice. I didn't expect to have fantastic bone health but the results now are very different from previous ones as I've never been told I'm osteopenia before but I believe this just means less dense bones than 30 year olds? I had the dexa scan as I was overdue one and the GP said I shouldn't be so high in the range of T4 as I risked getting osteoporisi. I told him I'd rather feel well but I would have a Dexa scan so we could see! As my calcium is usually just over range at 2.62 or thereabouts they blamed my high vit D dose (about 5000iu daily with K2 and magnesium usually) which threw me but I reduced vit D to 10000iu last winter and stopped it in the summer when outside daily. I have now raised it to 2000iu for the winter and as the calcium hadn't gone down since I reduced my intake I am more convinced that there isn't a link but it's no good arguing with them. I will get as many blood tests done as possible, which I've been meaning to do for a while but wasn't sure which to get tested re vitamins and minerals so I'll get that as a baseline and work on improving the supplements I take. The high cholesterol is supposedly genetic (according to consultant I saw 15 years ago) but I'm not sure how they know. I don't take hrt, but was wondering if it would be of benefit now. And I'm not taking statins as I reacted badly to them. I have Sjogrens syndrome too which complicates matters a little but I'm sure that's because my levothyroxine was reduced when a new consultant came in sweeping clean and only using blood results for dosing.

Thanks again

greygoose profile image
greygoose in reply to Maztee

It's not high FT4 that causes bone problems. T4 is basically a storage hormone that doesn't do much until converted into T3. But, high levels of FT3 couldn't increase your risk of osteoporosis. But, I somehow doubt your FT3 is that high! Doctors just don't have a clue.

I don't know how they know if high cholesterol is due to genetics, but I thought it was decided by how many other members of your family have high cholesterol. Do you know if you have high levels of inflammation? Has your CRP, or other inflammation markers been tested?

Maztee profile image
Maztee in reply to greygoose

I have Primary Sjogrens syndrome so have positive ANA and anti-Ro. It was diagnosed when I'd been on low levo for a few years (new consultant!) and I told GP I'd jump off a bridge if they didn't find out what was wrong. They did adrenaline testing too (I've forgotten what it's called but it was negative). Once they find something (they thought lupus then decided Sjogrens) they stop looking. It was me insisting on increasing levo that got me back to reasonable health with supplements after being a total non-functioning mess 9 years ago so I had to give up work. I asked to try T3 but of course the answer is always no and now they could blame Sjogrens for exhaustion, depression, aches etc etc. Anyway, other inflammatory markers:

August 23:

Creatine kinase 105 U/L (25-200) I don't think this is one but high levels show damage to muscles but not sure what constitutes high.

CRP: <5 mg/l (<6)

No others in this latest rheumatology blood take but am awaiting some remaining results.

I note in August B12 was 352ng/L (180-900) Serum Folate 12.5 ug/L (2.5-19.5) and

Vit D 84 nmol/L

Calcium 2.68 mmol/L (2.20-2.60)

Potassium 4.2 mmol/L (3.5-5.3)

Creatinine 52 nmol/L (45-84)

Plenty of other results but not sure if relevant though white cell count was low (3.50 with range of 4-11). No comment on that but an asterisk.

I can't see ESR on these results.

Not sure if any of these are relevant but thanks for your help and I'm going to get the most comprehensive blood test I can with all the vitamins and minerals so I have a better picture and speak to the endocrinologists about getting T3 tested though I don't know how to make the argument for that. I'll check on this forum for other advice 🙂

greygoose profile image
greygoose in reply to Maztee

Or, you could do a private test that includes T3.

Your CRP would appear to be OK, although the result is a little vague! So, I'm willing to bet that your high cholesterol is down to low FT3.

Anyway, good for you for standing up for yourself thus far. It's terrible that we have to do that when hypothyroidism is such a common ailment. Doctors ought to know all about it and treat it with ease. Instead, their attitudes are so confusing. :'(

humanbean profile image
humanbean

You might find this article of interest :

Title : How A Bone Disease Grew To Fit The Prescription

Link : npr.org/2009/12/21/12160981...

Maztee profile image
Maztee in reply to humanbean

Thanks, I'll take a read 🙂

Maztee profile image
Maztee in reply to humanbean

Very interesting and how do they get away with it? I thought I'd never heard of osteopenia before so it was a surprise. Then I read about how they scored it and they compare your bone density with a typical 30 year olds!!! That makes me feel better and I'll follow the natural supplement/food route to hopefully increase my bone density. But most of all I won't worry about falling over - I normally just bounce anyway!

in reply to Maztee

There are two scores. Only one compares your bones with a typical thirty year old.

in reply to humanbean

Very interesting - and the final paragraph is certainly the most telling. They used the new FRAX tool at my recent DEXA scan and it made a bad situation worse.

Another gem is antihypertensives. As the goal posts have moved, a BP of over 120/80 is now considered a cardiac risk. Utterly ridiculous

"There's a powerful economic incentive for pharmaceutical firms to expand the boundaries of the use of different therapies. So whether you consider treatments for osteoporosis or treatments for depression or treatments for high cholesterol — in all of these settings — pharmaceutical firms stand to benefit if the therapies for these diseases are broadly used," Alexander says. "Even if they're used among people who have very mild forms of these diseases."

humanbean profile image
humanbean in reply to

I have some blood test results for cholesterol done in the 1990s. I noticed that the reference range for Total Cholesterol went up to 7.5.

It was sometime in the 1990s that the top of the range was reduced to 5 (as it still is, I think). At the time this happened it immediately meant that over half of the adult population of the UK was considered to have high cholesterol.

Obviously this change gave Big Pharma a huge number of new patients for their statins.

in reply to humanbean

Of course it did. Conversely they’ve increased the B12 range in most labs to reduce the number of people who are low or deficient.

It makes my blood boil

Hi Maztee

You’ve had some good advice so I’ll not repeat it. Just wanted to make one important point.

Don’t beat yourself up about not taking HRT. Following a radical Hysterectomy in which my ovaries were removed, I took HRT for 10 years on the advice of the gynaecologist. Felt great and was comforted to know that I was protecting myself from Osteoporosis.

It didn’t turn out like that. Diagnosed with Osteoporosis 12 years ago after routine scan. T scores are now dire - low as they can be. I refuse to take bisphosphonates so my options are limited.

Hospital are looking for an injectable that will not interact with other meds.

In the meantime, I take magnesium and Vitamin D. I take calcium too as my levels are low but take Calcium Citrate not Carbonate as it’s more absorbable and gentler on stomach.

My bones hurt although it’s said that Osteoporosis causes no pain unless there’s a fracture.

I am 72 and have been prescribed HRT again with no remarks about my age. It’s still in the cupboard though. As a BC survivor I’m a little hesitant although I’m told there’s no risk (that’s what they told me last time😩)

TiggerMe profile image
TiggerMe in reply to

I've started taking bonebalance.co.uk/

might be of interest 🤗

in reply to TiggerMe

Thank you 😉

in reply to TiggerMe

Just ordered some.

Do you take your normal vitamins etc with this?

TiggerMe profile image
TiggerMe in reply to

Oh yes all the bells and whistles

in reply to TiggerMe

😉

Maztee profile image
Maztee in reply to TiggerMe

I've taken a look and it doesn't specify the specific collagen peptides which it contains so it's impossible to compare twitch other collagen supplements. I asked the question though so I'll let you know if I get an answer!

TiggerMe profile image
TiggerMe in reply to Maztee

It's bovine derived so this would be type I & III, either or both it'll be interesting to see if they clarify .... marine collagen better for type II which is supposedly better for cartilage, joints, hair and nails...

Maztee profile image
Maztee in reply to TiggerMe

They just sent me the same info that I'd read on their website. As it's bovine derived I won't take it but I'll look for something else. Good to know though!

Maztee profile image
Maztee in reply to

Hi thanks for your reply. I just get mad when I pass something by or overlook something that I later find could have helped. I may go down that route anyway as if I don't explore it I won't know if it was right. I can't help thinking the me opaise could be the key to women over 50 being affected by so many conditions including autoimmune 🤔

in reply to Maztee

I think you’ve got a point there

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