Taking levo causing osteoporosis?? HAD DEXA Sca... - Thyroid UK

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Taking levo causing osteoporosis?? HAD DEXA Scan this Evening. Radiologist said??!!

Thyb
Thyb

Hi All

I had 2 year follow up 'Dexa' this Evening. Radiologist carrying out the Scan told me taking levo for 2+ years has an impact on bone density, specifically osteoporosis

Radiologist also said 'research showed in the past that excessive t4 caused osteoporosis But more recent research she said correlates thyroxine meds with osteoporosis!!??

39 Replies
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SeasideSusie
SeasideSusieAdministrator

Thyb

If that is the case, and the medical profession know it, why aren't routine scans carried out on hypo patients?

I've been taking Levo for 45 years, I haven't had any scans and I have no signs or symptoms of osteoporosis. Should I be worried? Should I be asking my GP for a scan? No point, she wouldn't send me for one, they don't like referring patients for anything.

Thyb
Thyb in reply to SeasideSusie

Thank you for response SS, Guess as many of us I find the World we live in very scary....

Hence, to add a 'Professional' telling me what I'm taking can cause osteoporosis just made me even more scared....

I will 'plod on' with 'new' liquid levo....at least it doesn't give me lump in throat nor make me lightheaded- bonus!!

Thyb
Thyb in reply to SeasideSusie

P.S. Diagnosed hypo 2011, 3 spine breaks since, albeit 1st one 6 years later.

Big But,' cervical, lumbar problems since 2000. Probably hypo for many years before diagnosis because:-

Now realise my anxiety etc etc prob caused by hypo +

Positive:- when on new liquid levo don't feel the need for diazapam!!

I did manage to get my GP to refer me for a bone scan because of his ignorance. I am taking Metavive and have had a suppressed TSH for a couple of years due to the T3 content. As he kept saying that a suppressed TSH caused osteoporosis I asked to have the scan and he referred me (even though I knew I was OK as my T3 levels had never been high ). When will doctors stop just going by TSH levels without looking at the actual thyroid hormone levels? It's about time they got updated in their education!

I had a suppressed TSH of 0.002 for over 2 years and my GP didn't even spot I was hyperthyroid.

Were your T3 levels very high?

Yes when they eventually tested it,I think it was about 18. This is how incompetent some GPs are. I don't involve my GP in anything to do with my thyroid now and do my own private blood tests. I was told I was suffering from the menopause when I was 48 when infact I didn't go through the menopause until I was 55.

SlowDragon
SlowDragonAdministrator

Osteoporosis can be caused by LOW Ft3.....obviously extremely common when under medicated or poor conversion of levothyroxine

The worst thing for bones is being inactive and no exercise

Osteoporosis

thyroidpatients.ca/2018/07/...

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

ncbi.nlm.nih.gov/pubmed/825...

Osteoporosis- hypothyroid with low FT4 and FT3

tiredthyroid.com/blog/2012/...

Suppressed TSH and osteoporosis

thyroiduk.org.uk/tuk/thyroi...

SlowDragon
SlowDragonAdministrator

Recent bloods:-

TSH 5.7

FT4 9.7

Folate 9.7

Ft3 3.2 (3.1-6.8 pmol/L)

Results from post four months ago clearly shows low Ft3 and below range Ft4

Yes, I had one recently and on her list was Levothyroxine but I was able to say no to all the other questions and my results were very good for my age. Did your scan show any deterioration?

I had osteoporosis before I started levo. supposed to have three year dexa scans but you have to remind the GP yourself, it's not automatic. I forgot last year and now with Covid it's been left again. I think Vitamin D may help here too. Everyone should be checked for this that has a thyroid issue.

I’ve been told my last DEXA scan results show my spine and hips have 5& 6% loss since my last scan (7 years ago- notes I have just seen say repeat in 5 years ) and obviously slipped through the net . My endocrinologist has prescribed calcium and D3 on prescription , but my latest bloods from him say calcium levels in normal range - so very nervous and not started taking them yet ?...

Thyb
Thyb in reply to Simplyred57

Best Not to take the Calcium unless bloods etc show you are deficient. Taking Vitamin D, E, K2 should help bones.

Too much calcium can cause many problems and is easy to get from diet

Simplyred57
Simplyred57 in reply to Thyb

I take vitamin D with K2 , I really don’t know what to do , might try to speak to my endocrinologist?

KT77
KT77 in reply to Simplyred57

Eat dairy? Goats milk has plenty calcium. And parmezan cheese is very high in calcium too. Sprinkle on your food. Get nutrients from real food rather than supplement.

Marymary7
Marymary7 in reply to Thyb

And take Magnesium too. 😀

Thyb
Thyb in reply to Marymary7

Just Better You Magnesium topical spray

Marz
Marz in reply to Simplyred57

Boron and magnesium also part of bone formation. There are osteoblasts and osteoblasts - the latter cells build bone and calcium involved with osteoclasts and the processing of old bone cells.

drmyhill.co.uk

Excellent website above covering bones.

When taking VitD, the uptake of calcium from foods is improved so adding more is not always good ...

Simplyred57
Simplyred57 in reply to Marz

Thank you I will take a look .

Marz
Marz in reply to Simplyred57

Did you manage to take a look ?

Simplyred57
Simplyred57 in reply to Marz

Thank you yes I did, I’m going to email my Endo with some of the information and tell him I definitely am not going to take it, I’m waiting for the copy of my dexa scan to arrive then will email him, he wants to do my bloods again in 4 months , not sure if that’s all or just my thyroid, but maybe he wants to re check my calcium levels ( which were in normal range 🤷🏼‍♀️)

Marz
Marz in reply to Simplyred57

Glad you are making progress ... 🥰

Simplyred57
Simplyred57 in reply to Marz

thank goodness for this forum , I don’t know where I would have been , I was dragging myself through life and with help of people on here I am a changed person ( t3 has saved me for sure ) and I didn’t even know it existed until I joined the forum 🙏🏽

shaws
shawsAdministrator in reply to Simplyred57

It's a pity that most doctors are unaware that T3 is the Active Thyroid Hormone needed in the millions of T3 Receptor cells.

Absolute nonsense!! I can’t believe that this radiologist is qualified to make such a correlation! Not even the bloody endos know what they’re saying!

As Slowdragon has pointed out. 4mths ago tour FT3 was significantly low, almost 0% through range! And your FT4 looks barely in range too (no range given) Nothing about your thyroid results looks like you are overmedicated. The complete opposite is true with a high TSH and low FT4/3. This is what causes osteoporosis!

What’s going to happen with this information? Will this seriously unqualified radiologist record this in their notes? Will this misinformation be passed on to your GP?

Thyb
Thyb in reply to NWA6

Thank you! Obviously it's extra levo I need. I am taking liquid levo and omg no side effects now my body has adjusted.

However, Endo said 2.5mls daily to find out if it's tolerated and if yes 5mls....He forgot to mention when I should put it up to 5mls!! Idiot!!

I asked GP and she said she doesn't know, prob because they don't know much about much!

I mentioned to GP on Tuesday (phone call), that although TSH, FT4, FT3 have never been anywhere near 'optimal', that 'they should have suggested an increase 'years ago'!

I've only been seeing Endo for about a Year/18Months max and sure haven't seen him since covid....telephone only.

He initially told me I was 'allergic to fillers' in levo, hence, had actavis, Teva, Eltroxin, Wockhardt etc...all caused cfs, light-headedness, lump in throat, hot sweats, cold hands and feet, yellow tinge on upper lip, lack of appetite etc etc.

So far, touch wood, liquid 'appears to be ok'!

Range for t4 (12-22)

NWA6
NWA6 in reply to Thyb

So are you taking Levo only?

Thyb
Thyb in reply to NWA6

Levo only is all I'm 'allowed'!! When I've mega complained to GP and Endo they say TSH has to be lower and ft4 higher before they will 'think about t3...

Reason I have complained to them that my ft3 needs to be much higher as that is the hormone that body needs to feel well. Plus I've 'taught them' thanks to this Site that my TSH 'Should be around 1, and ft4 18-20, ft3 minimum 5.8-6!!

Problem is I've been left on low dose for 9 years so 'guess' my body will take some adjusting as levo increases

NWA6
NWA6 in reply to Thyb

I don’t know much about liquid Levo so I’m curious as to why they are adding such small doses 2.5mls? Can you not tolerate liquid?

I have to say though that I am impressed that they offer liquid at all and that they didn’t dismiss your allergic reactions to tablets.

Isn’t it awful that we have to be thankful for small mercy’s! Isn’t it terribly British to ‘take what you’re given!’ Lol

I’ll be interested to see how you go moving forward and I wish you all the best. I wonder if you can challenge the radiologist and at least get him pulled in line to not offer patients must information?

helvella
helvellaAdministrator in reply to NWA6

I don’t know much about liquid Levo so I’m curious as to why they are adding such small doses 2.5mls?

2.5mls is not necessarily a small dose increment. UK levothyroxine oral solutions come in four strengths. 25, 50, 100 and 125 micrograms per 5 mL.

Thus, 2.5mls could be 12.5, 25, 50 or 62.5 micrograms.

It is essential always to consider the strength of the product when discussing doses of levothyroxine oral solutions.

NWA6
NWA6 in reply to helvella

Thanks for that helvella. That makes sense as I don’t know anything about liquid Levo and so couldn’t get my head around the ‘small’ increases.

Thyb
Thyb in reply to NWA6

I can tolerate the liquid just not the tablets. Saying that I've only been on liquid levo for 2 weeks. I did some research and found the liquid 'only' contains levo, glycerin, E219 and water.

It has a very strong taste and 'initiàlly' made my Heart palpitate. But, my System seems to have 'calmed' down now.....Pharmacist told me probably because liquid is more 'potent'.

I'll use 'gut instinct' when to take 5mls and so on.

The radiographer doing the Scan was female and she started the conversation about her Mother having Hashi's and Osteoporosis. She noticed on the questionnaire I had circled 'thyroxine'. Seemed to hit a nerve re her Mother

NWA6
NWA6 in reply to Thyb

So liquid Levo is more potent! Aha! Good to know.

The radiographer really stepped out of her lane to speak to you like that. Such a shame that she is passing on misinformation ☹️

I was once told not to take 'herbs' like Magnesium by an Endo's nurse!

My Mum's always had symptoms of Ehler's Danlos (not something her GPs had heard of) which can coexist with Hashi's and compounds the difficulties of nutrient absorption from being hypothyroid, specifically with minerals like magnesium, iron and b12 - which affect bone density. It is possible that like her, a subset of Hashimoto's sufferers have one of the many genetic predispositions to ED which is known to cause spinal issues, weak joints, hernias, venous ruptures e.t.c.

It's worth being aware of this. ED means that the manufacture of connective tissues is hugely impaired - everywhere. This can effect the valves of the heart, ligaments connecting bones, the gut lining, the suppleness of veins, the strength of skin etc. Unfortunately, conventional doctors have not much knowledge about body-wide issues and focus on anatomically distinct areas of specialisation.

Hillwoman
Hillwoman in reply to HLAB35

Good points all.

For years, I suspected lifelong connective tissue problems were somehow connected with my other health problems. More recently, my SNPs revealed a number of markers for 'classic' EDS.

I have regular dexa scans due to a family history of osteoporosis. My first scan after having taken levo for a couple of years or so actually showed an improvement in bone density. Now 70 years old, that was a welcome result.

Has anyone managed to get the Dexa scans paid for by private insurance? What reasoning was given to get them to pay?

I was left on too low a dose of thyroxine for years too and have read taking too little thyroxine can cause bone thinning.

Karen

I've been taking levothyroxine for decades and asked for a dexascan. The radiologist was surprised to find that my numbers were positive, rather than the negative integers expected of someone in her 70s. I am now also taking Cytomel, and my poor doctor is in a Tizzy because it has pushed my TSH down to 0.001. But as long as my Free T3 is only 44% through the range, I know that my bones have nothing to worry about.

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