hi all
My stomach finally working but found out osteoporosis is severe
Do I reduce my medication?
T3 - 6.3 but that was 10 hours after last dose
T4 21 (12 to 22)
Tsh less than 0.01
please advise as in a pickle -
I don’t convert at all it seems before starting t3 my t3 was 2.1 (4.1 to 6.8)
My ferrritn jumped up to 134
Vit d 152
Vit b12 1054
Liver function is bad
Very very bad
Xxx
in tears as don’t know what to do xx
Someone more knowledgeable will be along soon, just wanted to reply & tell you how sorry you are going through so much Chouchou, with not knowing which way to go.
It is my hope that you can leave it from your head for a bit - yes easier said than done, I understand- and enjoy your holiday. No sense letting it infiltrate your joy, when days are not going to matter in the end.
Merry Christmas to you as well.
Thank you . I’m alone and scared thank you xxx
it’s Christmas and don’t expect any replies it’s ok though I totally get it . Also as I feel I have upset people on here as people have helped me and I keep asking questions . Also from my dosing I have created my problems. I don’t understand if my tsh was so low 0.01 but t3 was 2.1 (that’s why undiagnosed low t3 for years)
I appreciate all the help in the past and I have done everything possible to maximise my vit b b12 and now ferritin .
Xx I am worried what happens next year ? 6 months from now ? I’m 48 and DEXA of -3.5! I’m going to die or fall . Do I reduce my medication and become a vegetable bed bound again and unable to digest. Anyhoo I don’t want to delete this but thank you and ho ho ho ho xx
Thank you again for all your support and help. Xxxxmerry Christmas and hugs
Don’t blame yourself. They refuse to test FT3 in most cases, or recognise anything but a wide range TSH so we’re left to fend for ourselves. xxx
Oh Chouchou, please do not worry about asking questions, and having concerns. I drive that curiosity & not understanding something train all the time on here, smiling. With utmost glee! 🤩
I had severe osteoporosis (like you) before I even began taking thyroid meds. Then an endocrinologist started blaming the osteoporosis on my thyroid meds (TSH .01) less than a year after I went on medication. I suffered over a decade with hypothyroidism which was considered "within range." When I finally had private testing and understood that I had Hashimoto's and severely low free T3, I was able to work with various health practitioners to correct the free T3 levels. This brings into question whether decades of low T3 actually contributed to the osteoporosis?
Have you considered taking NAC starting now for your elevated liver enzymes?
I truly feel your pain and just wanted to give some moral support. Just know that this community is here for you and to help you. Merry Christmas to you!
Well I’ve never had T3 and I have a similar dexa score to yours. My GP said it takes years to get that bad and may have even started as a child (I think BS was falling out of her mouth though I could be wrong). Hope someone can give you some sound advice
Hi Chouchou
Gosh this is out of my comfort zone, but I had a look back at a post you made and fell lucky finding a previous reply (I think). TiggerMe replied and gave what looked like links to information that might help? I’ve pasted the link to your previous post below.
healthunlocked.com/thyroidu...
But I would say this, consider the whole person, not a low TSH. What really causes problems? Could it be;
the years probably of not having enough T3, either through not being diagnosed, or being under medicated,
being inactive because we are undiagnosed or under medicated (so no load bearing exercise),
nutritional deficiencies impacting the bodies ability to maintain bone density, which comes about as a result of poor absorption of nutrients in the gut.
All I would say is at this stage you need to start reading to make an informed decision. Don’t be frightened into a reduction…. The HRT could be having an effect perhaps let this settle for a while?
There is a collection of references that tattybogle has collated on a **pinned post** you might want to look at about low TSH. But have a read of the post from Eeyore as it would seem a good place to start.
Ultimately we can only share information and advice from a lived experience perspective here, but I would say - I’m not well as a result of advice from a doctor. I found the forum, got advice and information, read as if my life depended upon it and acted on that good advice. 🤗
There is also a good little article myth busting on TUK see link below.
thyroiduk.org/further-readi...
Thank you ! Definitely a combination of both and I had osteopenia years ago and with all my doctors appointments this was never addressed . I think must of been at least 15 years of very low t3 undiagnosed x thank you xx
That was a brilliant reply from Charlie-Farley . Hold all the she said in your mind and try to calm your nerves.It is true that many of us suffer from the results of years of low t3 and how it has affected our body. I certainly do.
Sending you hugs and good wishes.
Ooo thank you ☺️
Dear Chouchou, stay calm. You are still the same person you were before be8ng diagnosed with osteoporosis so don’t panic.
I was diagnosed with osteoporosis in January 2020 when I broke both bones in my wrist when I fell out of bed - no idea how or what I did because I sleep in a totally darkened bedroom. I’ve got automatic night lights now!
It’s really galling that you know you had osteopenia and weren’t advised about what to do. I was similar - I had Graves’ disease, then I was given steroids for inflammatory arthritis (I also developed steroid induced T2 diabetes) I was also given PPIs which aren’t good for your bones. It makes me mad that doctors only treat ‘their’ part of your body without bothering to tell you the knock on effects their treatments could have on other parts of your body which is pretty much what Charley-Farley has said, it is really annoying but once it’s happened there isn’t much you can do.
I started taking alendronic acid and felt so ill I stopped after four horrible months. I was scared to take it and scared not to. Then my husband pointed out I was still the same person I was before I knew I had osteoporosis and I relaxed.
I get quite a bit of exercise - walk every day for around an hour plus two hour long Pilates sessions every week. We are all around my age (75) and fragile in one way or another do a lot to help with balance. I also take a lot of bone friendly vitamins and minerals - not sure if they help but I feel I’m doing as much as I can to help myself.
It’s important not to be scared when you are moving although I’m very careful when there are lots of wet leaves, ice or mud on the ground and I use my Nordic poles when I’m out walking although saying thay I don’t go out when there is snow or ice on the ground.
I eat well, a good bone friendly diet with lots of oily fish, chicken, I avoid sugar where I can but obviously I’m often tempted. I don’t eat junk food or drink diet cola etc.
Look on the Bone Health part of Healthunlocked- you will get lots of information and support there. Also look on the Royal Osteoporosis Society website for information on exercise and diet and every other aspect of osteoporosis.
Look into OsteoScan REMS scans osteoscanuk.com They are expensive but Nick who does them is a spinal consultant, he is also very reassuring. You may find out your bone density isn’t great but your bone strength is not so bad.
Good luck with it all but try to relax and enjoy Christmas just be sensible and don’t go standing on chairs or anything ‘dodgy’. Well that’s what I tell myself. 🎄
thank you !
You guys offer so much help and reassurance and like an extended family. My own family just calls me a waste of space due to undiagnosed t3 I was in bed most of the time
Regarding the alendronic acid - what happened? My GP suggested to start but I read about it and with my gastro issues there’s no way I can manage that. I did read about some injections once a year.
I’m grateful you have taken the time out to reply and thanknyou so much
Thank you thank you thank you
Xxx
Families can be a real pain. To give them the benefit of the doubt perhaps it worries them that you might have something wrong with you - then again perhaps they are just thoughtless but to call you a waste of space really isn’t nice.
Alendronic acid - well the only thing I was worried about before I started to take it was gut problems. Once I started I had no problems with my gut but I had loads of other symptoms.
I had sore ears, blurry vision, sinusitis - I had three prescriptions for antibiotics for that, my teeth hurt but there was no reason for that, all of my bones hurt, especially my right hip which freaked me out, I used to take the pill on a Sunday morning and sleep for the rest of the day because I was so tired - then my bones started to ache, I just felt dreadful in body and mind and kind of lost the will to live. I used to cling on to my husband to walk, it was horrible, it was like I was a completely different person to how I used to be. Once I stopped the AA I felt better.
If you have gastro problems you could have an annual infusion every year for three years. I know a lot of people who have had that and who do really well on it and they think I’m absolutely mad for not having one. My Pilates teacher who is a physio thinks so too as does my rheumatologist and another physio I use. I just don’t discuss it now.
Have a look on this site though theros.org.uk you will get loads of information and you can call or email them for advice.
Good luck,
Thank you . Huge hug and merry ho ho ho Christmas
WitchingHour2point0 have you seen this mobile scan NuttyFruitCase has mentioned 🤗 Looks like it might be a dodgy meeting in a hotel 🤣wear your best pants 😳😆
We'll all be hoping for new pants from Santa now, Eyesore.
Hopefully fleecy rather than lacey 🤞 rinsed out my long johns yesterday... bring it on ❄️ 😁 Have you had any yet?
Oh yes. Had a horrendous drive through snowy roads for 60 miles south to reach Aberdeen thereafter it was easy going as just rain down to Glasgow.
What a wonderful forum we have 🤗♥️ look at the help and advice that comes from lived experience, but most of all empathy.
Hoping everyone has a peaceful Christmas.
Thank you xxxxxxx I’m crying so grateful for the advise and care . I really do appreciate it so much.
Xxxx
Lots of virtual hugs! You have amazing resilience in the face of considerable adversity. With regards to your family, it is hard for someone who has not experienced hypothyroidism, especially when it hasn’t been well managed (which is what brings us all here) to understand. Also people like something to believe in, a bit like Santa and it can unsettle people to realise widespread mismanagement of a common condition exists. Sometimes callous comments come from a place of fear and again ignorance. We can forgive family but doctors, despite being trained in an echo chamber could do worse than look up from their computer screens now and again.
I think the fact that this forum has over 130K members who have landed here because they are suffering is a sad testament to the poor understanding the medical profession have on thyroid issues. We are the tip of the iceberg. There will be many more suffering who do not realise there is a form out there for them and help. Should they wish to seek for it…..
Keep safe ChouChou and take heart! There is much you can do 🤗
Hello ! Good evening … I hope you are well.
Thank you to this amazing forum. I am sorry to bother you but I have a couple of follow up questions and advise
1. I started Ostrogen oestrogel 2 pumps - a day - 3rd day - does it affect thyroid or t3 levels -
Reason is my stomach stopped working no motility . Exhaustion is beyond .
Thank you and hope you are well.
Xx
Hi Chouchou 🤗
I'm an ignoramus about sex hormones, but I from everything I have read on here HRT can impact on thyroid hormones and you may need more to counter the effects of HRT. I was just talking earlier about it to FancyPants54 . I would say others more knowledgeable will need to come in with their experience to flesh this out.
Here is a link I shared earlier that I found. It's Dr Louise Newson about the effect of HRT on thyroid medication, so this could explain the loss of motility.
balance-menopause.com/menop....
BUT! if medication is out of kilter we still need to go. I'll be honest, constipation even now can catch me out. So I have a several pronged approach to managing it. I have to be careful to stay hydrated, eat plenty of vegetables keep away from breakfast cereals (including gluten free and oats) and I have just started taking a teaspoon of inulin half an hour before breakfast and dinner. Inulin is soluble fibre and it really helps. Magnesium Citrate is a form that helps the bowels also. Magnesium comes in several forms but I plumped for the one that would help to keep me regular.
I have also identified another food culprit - choco! I've started to call it poo glue and coffee can dehydrate me and slow things down, so I now limit to one a day max, but frequently leave it. Psyllium husk (now used in some gluten free products) is also fab and can be used as a bran alternative or incorporated in recipes. Apparently it helps the texture and 'body' of the breads making them more like a glutenous bread. We buy Promise, that has psyllium husk in and it is a really good substitute.
I know it is excessive and I am trying not to have sugary drinks but if things are desperate, a large glass of orange juice or interestingly a bowl of fresh strawberries are also very effective. Prunes don't seem to be as effective as the old strawberries.
Hope this helps 🤗
shall I start a new post .. ??
I have done everything and stomach stopped working .
Please help .. I tried everything including laxatives and nothing .
Absolutely and don’t let it go on not good for you 😬👍
When did you last go?
2 days ago 🙈
Right the NHS GUIDELINES say get in contact after a week! But if you are in huge discomfort and have been having ongoing motility issues no way should you wait that long.
Chuck a post up and I will reply which might draw some attention- my father went the a phase of poor motility and he ended up being given a phosphorus enema. It worked but I have no idea what it felt like he was a fair way along the journey if you get my drift- difficulty in communicating.
When you put up a new post tag me in type in
@Charlie-Farley (no spaces) a little box with my name and face should appear- click on it and the name should turn blue 🤗
hi, sorry to read what you’re going through especially when there’s no one around to talk to. My limited understanding is that if you’re taking thyroid medication your TSH will be suppressed I.e. v low, as long as your T3 and T4 are good, and you feel well then I think you carry on. I don’t know what’s caused your liver result - maybe get a follow up with the GP? For the osteoporosis gentle exercise such as walking or yoga can help - little and often is the key. In other words best to start for example, with two 5 minute walks a day, do that every other day, when it feels easy and effortless increase timing to 6 minutes. You will get there. Be gentle with yourself. One day at a time…Breathe. Sending hugs and best wishes
Hello Chouchou. Lots of great advice. So sorry to hear you feel so upset and it's Xmas. Poor you. 😢Honestly I hope your GP is referring you to a bone specialist. I was referred years ago after a bone breakage. They were very good. My bone density is now in range. They looked at my diet and my uptake of calcium etc.... It's was really helpful. I have taken Alendronic off and on. Been OK..
What did your GP say about your liver function? Are they checking this out for you. I had simular results to yours. My liver settled once I was GF and my hypothyroidism was fully addressed.
Hang in there. Your on a roller coaster I know but on the plus the blood test is identifying stuff. This can be addressed. You are not alone.
I'd leave your thyroid hormone replacement alone if it were me.
Big hugs xx
Easier said than done but please do not worry about this. It can be fixed. Often many blood markers can be a symptom of something else and can be easily corrected. I noticed you liked my post about my osteopenia diagnosis. I would recommend consulting somebody who can look at everything from a functional medicine perspective - gut, thyroid, nutrients, HRT etc. I’m seeing a very good FM trained endocrinologist and I highly recommend you see them too. It’s an investment but worth it. Otherwise we are just stabbing in the dark and wasting more time .
How long have you been on T3 and did the bone problems proceed taking T3 if so I would think unlikely to be the cause.
Dear Chouchou,
I'm so sorry you're dealing with this alone. I can't help with your question about T3 dosage, but I can say take heart, there's hope. Terrifying although it is to be told you have osteoporosis at a young age, it doesn't necessarily mean you are stuck with it.
Depending on the underlying causes of your osteoporosis, you can improve your bone density yourself. At 49, I was told I had osteoporosis (see my profile). Through taking HRT, a radical change in diet, exercise and lifestyle I moved into the osteopenia range and I'm still there now.
Firstly you have to figure out the main causes of your osteoporosis by looking at your lifetime history of medications, diet and exercise. Did you do lots of crash diets, eat loads of junk food, have digestive issues, drink a lot, experience chronic stress, take strong antibiotics or steriods for prolonged periods? In which case you might not have built up your bone mass sufficiently when you were under 30, and/or then started to lose it too fast in your 30's and 40's.
You also want to make sure you don't have any additional untreated conditions that might have led to it or made it worse (in my case it was Graves). These need treating and stabilising before your bones can have a chance to recover.
You're already on the right path if you've recently resolved your gastric issues and you're taking HRT. Your body will be better able to absorb the nutrients it needs to build bone, and your increased female hormones will be helping.
The other building blocks of bone are optimising your nutrition (including vitamins, minerals and protein), moderating stress and doing weight bearing exercise. Easier said than done if you have thyroid problems.
If you find it difficult to do weight bearing exercise like fast walking every day (poles and a weighted vest make it even more effective), you could invest in a MarodyneLiv low intensity vibration machine (low intensity is vital, otherwise you can damage your eyes, don't use the ones at the gym). You stand on it for 10 minutes once or twice a day. It's expensive (£3000+), but I use one, and my BMD scores went up dramatically.
Aside from the resources mentioned by Charliefarley and fruitandnutcase, some great books I found really useful were:
1. "Better Bones, Better Body:beyond estrogen and calcium", 2nd edition, Susan E Brown 2000. It's very old, but she makes the causes and what you can do about it very easy to understand.
2. "The Whole Body Approach to Osteoporosis: how to improve bone strength and reduce your fracture risk", R. Keith McCormick 2009. He had osteoporosis himself in his 40's. He gets into the nitty gritty of the science and links it to autoimmune and gut issues. Very informative. It's my diet and supplement bible. His new book, "Great Bones", is a harder read, but also good
3. "The Healthy Bones Nutrition Plan and Cookbook", Kelly and Kelly 2016. This is a bit hardcore (sprouting grains, grinding your own flour ..), but some useful insights into the importance of eating the right things and being able to absorb the nutrients in what we eat.
In terms of daily life, while it's very important to move if you can, it's vital you avoid any exercises or daily movements that involve extreme flexion of the spine, such as bending from the waist to tie your shoes or picking something up. This puts undue pressure on the front of the vertebrae and can lead to microfractures that then build up into a collapsed vertebrae. You need to learn to bend from the hips and knees instead.
Also have a look at Margaret Martin's melioguide.com website and YouTube for lots of useful information on living with osteoporosis, building bone and safe exercising. She's a Canadian physio with years of osteoporosis experience. Her practical advice and resources really helped me cope and feel less afraid to move when I was first diagnosed.
I wish you the very best.
Wow I am blown away with the incredible replies and information!
Thank you !
I will digest this all and start researching. Thank you ! I have to go for walk as can’t stop crying the pain and abuse is something else at home.
I will write later.
Thank you xxx xxxxxxxxx merry Christmas to this incredible community xx thank you
brilliant resources - regarding the machine how many points did the bmd go up as I will def try and get it. I have a very old vibration plate from 15 years ago which my mum trying to force me to use but read those ones are not good .
Thank you xxxx
Over 15%, moving me into the osteopenia category in less than a year. Unfortunately I don't know if it was the machine responsible, or the combination of it plus HRT, diet, vitamins, exercise, and getting Graves under control. I suspect my bone turnover cycle was still abnormal because of Graves, and that's why it changed so fast (I don't have bone cancer as far as I know, another possible reason for a big BMD increase!). Usually it takes years. Still, if exercising is a struggle, it's worth considering, there are lots of people with good results from it.
Don't panic about osteoporosis. It takes years to develop and years to improve. In January you could look at theros.org.uk site. They have lots of useful information. Take time to make decisions about changing anything
Hi there, I had a bone scan in July. I have osteopenia. Not sure for how long. I had a full hysterectomy back in 2010, my private endo said I should have had a bone scan sooner because of that……………
I’m also on T3. My TSH is 0.01 too. The endo tried to get my TSH up a tad by lowering my Levo. Made me very ill. Won’t be doing that again. My FT4 and FT3 are 33% and 70% through the ranges.
I have no idea when my bones started to thin (I’m 58), I’m on HRT patches. I was also very scared when I got the diagnosis of osteopenia, my cousin was diagnosed with severe osteoporosis at the same time. She is having the injections and feels a lot better on them.
With the liver results….sometimes we can have blips. Mine went bad earlier this year too. Turns out I had a tooth abscess and once I had antibiotics and the tooth removed my liver results calmed down again. So maybe you have an infection you are fighting off? I’m sure you will get a retest. You are probably like most of us on here - little/no alcohol and eat well - so it’s rather cruel that we should get these issues (I know a person who drinks far too much for years and their liver is fine! )
The advice on your post here is great (and the little chats too ), I’m going to follow some of it. Please don’t worry yourself, you will be ok. Allow yourself a bit of time off to recharge (if you can) over the festive period. If you feel ok on your current thyroid dose then why change it?
I wish you a Merry Christmas (having a quiet day myself to recharge a bit before visitors tomorrow). 🎄🎅🏼🤶🏻
Happy Christmas to all! Chouchou You’ve had good advice here and I can only add that I reversed my -2.2 , -2.3, -2.0 dexa-scanned osteopenia while on 75 mcg T3 per day! It took two years, and one measure is still slightly low, but it is now measured at 1.5, normal, and normal (that’s the 3-site measure).
I was also on complete bioidentical compounded HRT, consisting of estrogens, progesterone, and testosterone; and I ate 5-6 prunes a day (recommended from a university study), as well as cutting severely back on alcohol, gluten, and sugar, limiting caffeine to one cup a day, eating lots of green leafy veg and a variety of veg alongside lean meats. And staying active! Also B12 sublingual and extra bit D3, K2,& boron (doc suspected poor absorption). Also low sodium for some unrelated Ménières episodes. Everyone is different, so your path to bone rebuilding will be a different one, but please don’t lose hope! May 2024 be a good year for us all.
And thanks so much to our wonderful admin team!
Chouchou, I know it is easier said than done, but try to enjoy the season for the time being. The osteoporosis did not appear overnight and it will not get worse within the next week or so. There are very many factors leading to osteoporosis. Endocrinologists love to blame it on the thyroid, especially the low TSH. In my case it was blamed on lack of thyroid hormones, which I think is rarely what doctors would assume. There is no doubt that the thyroid plays a role since it regulates metabolism. What role, however, there seems to be very little research and what there is, does not seem conclusive. Some research says TSH even slightly below the reference interval will cause osteoporosis, whereas other research goes as far as saying that as long as the TSH does not go below 0.04 (some even lower). In other words, they don't really know. My guess is, that, as most things, it is very individual and more than one factor plays a role, least of which is TSH.
I just checked, and "Dr. Lani's No-Nonsense Bone Health Guide" is available in the U.K. I highly recommend that book. It explains everything about scans, history of osteoporosis diagnoses, medication (or not), exercise, supplements and so much more. It is very comprehensive. And when I panicked and then fell into desperation it was a beacon of hope. Just as with thyroid issues there is a lot to learn about osteoporosis. Don't let anybody scare you. Take a step back and calmly start to get an overview of your situation and your options. This is NOT an emergency. You have time to gather knowledge and make a plan of action that is right for you. Nothing has to be done yesterday. In my case vitamin D had been very deficient (probably for years if not decades without testing). Without reference interval I can't say how your vitamin D status is, but it seems high to me. Too high is not better than too low and can cause increased bone resorption unless there is also sufficient calcium to offset it (most likely in supplement form). This is not the only thing to focus on, though. It's best to learn what applies to you and then take appropriate action.
As far as thyroid goes, a wise person on this forum once said (in connection with osteoporosis) that if your TSH is "perfect" but you are so exhausted that you spend most of your days in bed, you are just as (or more) likely to get osteoporosis as when your doctor tells you that your TSH is too low and you feel great and are active. That would be, in my opinion, the first thing to look at. How do you feel? How would you feel if your thyroid hormone supply would be lowered? From there I would start to look at what you can do about the osteoporosis.
I hope this helped. As long as you don't break your ribs when you sneeze or break your bones when shaking hands, you are still okay and can start on working out an osteoporosis plan. Things will most likely be fine. I wish you all the best. Take care. Be good to yourself.
Should I reduce levothyroxine due to palpitations?
Help with self medication please
OVER MEDICATED? PLEASE HELP 🙏🏼
Do I need to adjust my medication?
Help please what should i do.
