I am in 12th year of T3 monotherapy and am 65. My GP and endo are concerned re zero TSH and negligible fT4. So I had a DEXA scan in January. Results as follows....... Lumbar spine T - 3.6 : Z - 1.8 Hip bone T - 2.3: Z - 1.0
Femoral Neck T - 2.6 : Z - 1.1.
The NHS advice is to
1. reduce T3 to 25mcg
2. to take Alendronnic Acid 70mg weekly
3. to take Theical daily.
The NHS prescribe me 37.5mcg T3 daily and I top up to 50mcg in order to function well enough to fulfil family activities. (I have let them know)
I am waiting for them to confirm the risks of exacetbating my current gallbladder condition ( a 16mm stone) or reintrocing kidney complications ( a total right nephrectomy in 1995 due to a PUJ blockage).
My BMI is fine and I try to exercise frequently.
Wondering if anyone else is trying to balance similar issues.
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sarahstevenson
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So, what is your FT3 level? How about your vit D? Is that optimal? They cannot just jump to the conclusion that it is zero TSH causing the osteoporosis without considering other factors.
Thanks greygoose, fT3 was 4.5 range 3.8-6.00...........had taken 25mcg liothyronine for the preceeding 2 days, 37.5mcg on 3rd day before and 50mcg prior to that.GP hasn't jumped to point to liothyronine but hasn't found other cause and under guidelines has to advise to treat osteoporosis and to reduce T3. They are really good at discussion but are stuck with protocol. They phone for endo advice but spoke to a different one to usual.
Yes have been completely gluten free since 2014, as son has coeliac disease. I am not dairy free as concerned re calcium but rarely have milk and restrict cheese. Absolutely understand re dosing. I have been stable on 50mcg daily for years. NHS started worrying when TSH hit 0.02 last year so reduced my script to 37.5mcg and asked for DEXA scan. I can't operate on that dose and was saddened they didn't appreciate it's a big jump, which I pointed out. I reduced down prior to blood test hoping to increase TSH reading due to T3 half life but test result was lower... Bother... at 0.01. So then with DEXA results plus TSH the protocol is reduce T3 script further.... Hmmmmmm.Adrenals are struggling as lots of family commitments at the moment so hoping I can support adrenals and continue, with T3 at 50mcg. Boo boo to the DEXA results.
I agree with SlowDragon Rather pointless testing after such a haphazard regime. The upshot is you really have no idea what your FT3 level is.
So, did they test your vit D? Did they test magnesium before suggesting you take it? Calcium is neither a treatment nor a cure for osteoporosis. In fact, too much calcium can make things worse. And if you're taking vit D, that will increase your absorption of calcium from food. Doubtful you need more.
Magnesium is far more important for good bones. Did they mention that? And, testing magnesium is pretty useless, due to the way the body uses magnesium. You can have good levels according to the blood test but still be deficient. And, taking magnesium is essential when taking vit D because the two work together.
Have been taking NHS vit D since 2012, and my private physio added in Magnesium, which is now mid range in bloods ( know it doesn't reflect tissue levels). Really notice much worse aches and pains when I miss taking it. GP said he's happy for me to continue with magnesium saying I evidently have low absorption factors which probably are true for calcium profile too. Thank you, will try calling osteoporosis society to get more info.
How far off ‘normal for 65 with your various health history and experiences’ are those Dexa results?
I’m just wondering if it’s possible to trial continuing on your dose while adding those extras rather than reducing dose and adding extras as a middle ground.
I’ve frequently seen people say they’d rather have quality of life and chance it… but that’s a very personal decision.
Thanks regenalloment, yes they understand if that's what I decide to do. Trying to balance up my risk of further kidney / gallbladder implications. There aren't any specific figures for my situation as the DEXA T scores are based on standard deviation from whole population for females (UK I think) and the Z scores for my age group, ethnicity and postcode. Presumably this includes all those folk who have been taking HRT protection, unlike myself. Don't know if there are figures for subgroups. Will carry on learning. Thank you...
Essential to test vitamin D, folate, ferritin and B12 at least annually
What vitamin supplements are you currently taking
Do you have autoimmune thyroid disease (hashimoto’s)
Are you on gluten free or dairy free diet
Test thyroid early morning, day before test split T3 as 3 doses…..spread through the day….20mcg waking, 20mcg mid afternoon and 10mcg approximately 9-10pm …..test thyroid 9am following morning
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Thank you SlowDragon. Yes Hashimotos and Yes they've tested D, folate, ferritin and B12. I've been on NHS vit D for 11 yrs and the Theicol now prescribed would increase that dose. Ferritin bobbles along in the 70's as I take Hemaplex. Magnesium is mid range by taking cytoplan supplement, GP says to continue this. Will look at the additional tests on your list. Thanks
Yes very strict gluten free since 2014 when son was diagnosed coeliac and I was so much better with my totally gluten free kitchen. Low dairy rather than no dairy as concerned re calcium intake.
I have osteopenia, my TSH is 0.01 because I take ERFA. Since starting on it as opposed to just Thyroxine, my bone density hasn’t reduced further. I am also taking HRT now and doing weight bearing exercise.
Thanks Spangle15, good to know your bone density hasn't reduced further. I am exercising as much as I can...... Walking, conditioning, stretches etc have been enjoying Mr Motivator workouts online, so am unsure how I could increase. Will have to run on the spot whilst washing up.... have a strapped up knee at the moment.... Darn it as physio says it needs a rest 😂.... interesting you are on HRT thanks
low estrogen levels can contribute to osteoporosis and at 65 your levels are likely to be minimal. It’s now proven that body identical hrt can help prevent osteoporosis although it’s not used as a direct treatment. I asked for a dexa scan due to a family history of osteoporosis and ongoing joint issues and my specialist said there’s no point because if I do have it she would just recommend to start hrt which I already take. Might be worth exploring?
I was diagnosed with osteopenia which I have reversed (evidenced by 3 x DEXA scans) with the addition of T3 containing meds, HRT, keeping Vit D optimised and weight bearing exercise.
'fT3 was 4.5 range 3.8-6.00...........had taken 25mcg liothyronine for the preceeding 2 days, 37.5mcg on 3rd day before and 50mcg prior to that'.
I can't comment on your labs as you seem to have reduced your T3 dose in the preluding days so they are not a true measure. T3 is vital for bone health but too much T3 makes high bone absorption exceed bone production with a net loss of bone mass. Elevated SHBG is associated with bone fractures and will rise in the presence of high T3.
I'm not suggesting you stop or alter your T3 dose but need further investigation such as true TFT's and reassessment of bone supports such as quality a Vit D supplement with K2.
In hypothyroidism gallstone issues can present through slowed gut motility and liver function where excess by-products are dumped in an over worked gall bladder. In hyperthyroidism I have read of association between low TSH and gallbladder issues but I suspect it is the high level of thyroid hormone.
Thanks so much for your reply radd.... Helpful and informative. Will ask about HRT when I speak to GP....... and get more blood checks... Well done you! Next off for a power walk in the rain.... ☔☔
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