Sunseaandsand in reply to Fruitandnutcase2 years ago

Well thank you for replying to me.

I do have a follow up call with a dietician tomorrow so I will ask what her thoughts are.

Take care

Sunseaandsand in reply to Met002 years ago

Thanks for sharing with me. Despite eating well I just can not increase my weight, and for me it is not a good thing, I do not feel hungry but eat to try to keep what weight I have.

I will be speaking to a dietician in the morning and will see where that takes me.

Take care.

Sunseaandsand in reply to ling2 years ago

Hello ling and thank you for your reply.

I do think the doctors should be looking more at why I have lost the weight.

I am now under 6 stone and feel much weaker and getting out of breath more easily.

However over the last couple of months although I have not lost more weight, despite eating as much as my stomach will allow I stillhave not gained any.

Because of Covid my scan and x rays at the osteoporosis clinic have been put back yet again to April.

Take care and stay safe.

ling in reply to Sunseaandsand2 years ago

This statement "I do think the doctors should be looking more at why I have lost the weight."

I think we are on the same page concerning the weight loss. Yes! It needs to be investigated.

Given the covid situation where u are, just wondering since the osteoporosis scan and x rays are delayed, maybe u could try getting other basic tests done in the mean time, which might still be available, like say, thyroid blood tests, or check with the GP to see which other blood and other tests can be done in relation to the weight loss?

Best wishes.

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Fruitandnutcase in reply to Sunseaandsand2 years ago

Sunseaandsand, I definitely think your doctor needs to get to the bottom of why you have lost so much weight. You really don’t weigh much at all and that combined with the fact you feel weak and are getting out of breath really should be something he is investigating covid or not especially as you are eating as much as you can.I hope you can manage to get something done soon. Have you tried the sort of protein drinks you get from the hospital? I have a good friend who incidentally also has osteoporosis as well as problems with her gut and finds it difficult to eat and of course she lost weight she was given those drinks on prescription - think she also had a carbohydrate version. They come in cartons like small individual sized fruit juices and I gather they tasted ok.

At least that might keep your weight up but apart from the scan and x-ray I think it would be worth having a chat with your GP.

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Sunseaandsand in reply to Fruitandnutcase2 years ago

Thank you, Yes I have been given some protein drinks and some carbohydrates but as of yet my weight is not increasing.

I can not possibly increase my food intake further with 3 meals and a snack in between plus supements it is more than enough for me .

I do not know if I am out of breath because of the fractures, or my low weight,or perhaps whatever is causing my low weight is making me breathless.

The GP knows of my problems but does not make any comment only listens.

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Lor7 in reply to ling2 years ago

You might have a thyroid issue. Before hypothyroidism appears the thyroid sometimes becomes overactive and would cause weight loss. Happened to me and I dropped 1.5 stone and stayed like that for a couple of years. Then I piled weight on until I was ten stone! Then diagnosed with under active thyroid and still struggle to keep weight down.

Sunseaandsand in reply to Lor72 years ago

Thank you, that has given me something to think about.You are the second person to bring it up.

I have had tests in the past and they have come back ok or borderline.

Thyroid problems run in the family.

This has even made me think of my grandson who at 23 and has always struggled to gain weight but has in the last 5 months put on almost 3 stone, and his weight is still increasing.

He is on the thyroid register from the age of 16 but it is over 6 months since his last blood test.

Thank you once more stay safe.

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Sunseaandsand in reply to karmel2 years ago

It can be very difficult when certain foods upset our systems and sometimes even more difficult to find out which food is responsible.

Perhaps you could monitor your weight more closely to be sure it is your diet and IBS that is contributing to your weight loss.

karmel in reply to Sunseaandsand2 years ago

I thought it was difficult restricting and\or eliminating food groups because of my IBS but at least I could have a few treats but having to follow a low fat diet to keep my cholesterol down as well made me tell my doctor that it made some food unpalatable. The only advice she could give me was to eat more to get my cholesterol up so I could go on statins. 😟 But having a moan about it puts things into perspective and there are so many troubles in the world right now that I feel I should not complain. 🙂

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Sunseaandsand in reply to karmel2 years ago

That is terrible advice for your doctor to have given you.Just when I thought it was only certain doctors at the practice I go to that offer bad advice!!

We just can not win with these doctors can we.

I received a letter I was copied into this week following a phone appointment I had with the consultant at the hospital.

He had written that my weight is stable!!

Don't think I shall be getting much help from him.

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karmel in reply to Sunseaandsand2 years ago

Unfortunately sometimes you do feel that you aren't going to get much help from some medical practitioners.

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Sunseaandsand in reply to DISC2 years ago

Hi Disc,

Thanks for your reply.

I am 66 years old and was first diagnosed with osteoporosis about 17 years ago, so was a similar age to what you are now.

I have had many of the different treatments over the years but unfortunately I have not tolerated them well.

Having said that I never ruled out trying them, in hope that I found one that I could tolerate well.

At present I am not on any treatment, because of the covid situation I am having to wait for treatment as well as scans ect.

I can not advice on what is best to take.

What I would advice, is that anyone starting out on treatments, would be to try one out because if it does not suit then you can try another, don't be put off by others negative experiences until you have tried things for yourself.

We are all very different.

In my own experience over the years, the one strong bit of advice would be if you find something works well for you with little or no side effects then stick with it.

I believe the secret of success with these treatments is to continue with them, if offered a drug holiday ask if you can have another treatment in between.

You are very young so do whatever you can to protect your bones and prevent fractures.

Take care and let us know how you get on.

Sunseaandsand in reply to DISC2 years ago

I forgot to mention that the treatment I have been waiting for is the yearly infusion of Zoledronate.I do not know why they have held off with it other than Covid 19 getting in the way.

If I was starting afresh I think the Zoledronate woud have been my first choice of treatment as it does seem to give the least side effects.

DISC in reply to Sunseaandsand2 years ago

That is what I am waiting for too...take care x

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Sunseaandsand in reply to DISC2 years ago

Good luck and let us know how you get on with it.x

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Sunseaandsand in reply to MollyStark2 years ago

Hello Molly Stark,Thank you for your reply

The topic of Forsteo was actually brought up in my telephone conversation.

When I was on treatment with Forsteo my weight went down drastically, I did not link it to the treatment until after I had completed the 2 years course of it, as then I did regain most of what I had lost thank goodness.

I also lost muscle of which I did not regain.

I did end up being investigated with scans and many tests by a rheumatologist who became extremely concerned about my low body weight thankfully nothing serious showed up.

I understand about the tummy bulge and the trousers getting tighter!!!

My call went as well as could be under the present circumstances and I have come away from it with a few more things to add to my diet but the overall feeling was that my health needs to be checked out, which as everything else is difficult in the current climate.

Pleased to hear the forsteo is being well tolerated by yourself and I am sure the end results will be worth waiting for.

Take care and keep safe.

Sunseaandsand in reply to Chrissiechris2 years ago

Thank you Chrissiechris, Losing height with fractures does give us the problem of everything getting squashed down and smaller meals would help feel more comfortable.

I feel full all the time because of the 3 meals and food supplements ,yet can not and dare not cut down the portion size because it would for me reduce my weight even further.

Can I ask how any fractures you have and where in the spine they are?

Chrissiechris in reply to Sunseaandsand2 years ago

I was told that I had 3 collapsed discs, also osteoporosis and osteoarthritis. No treatment except for calceos twice a day and Alendronic once a week. I was diagnosed with this after x-rays. Had to natter for these after being put off with pain killers for 4 months in 2020.

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Sunseaandsand in reply to Chrissiechris2 years ago

I am sorry to hear that it took 4 months to be x rayed.I have had the same problems with all of my fractures, being told with the first 3 fractures that I had muscular problems.

I was actually sent home in January 2019 after being taken to A &E, as after being xrayed I was told I did not have any new fractures.

After insisting the x rays were looked at again it was confirmed 3 weeks later there was a new fracture.

The more recent fractures have still not been x rayed owing to Covid 19 I know I have had them but not the exact location.

I send you best wishes with your health for the coming year and hope the situation improves very soon for everyone.

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Sunseaandsand in reply to Heather92 years ago

Thank you Heather9,

I have had some really interesting replies.

I have felt for some time now that the osteoporosis or treatments are in some way contributing to my weight loss.

I do know that some scans are being done in the current circumstances but like everything else it is down to post code lottery.

Take care and I hope you can get your scan in the near future.

Heather9 in reply to Sunseaandsand2 years ago

Many thanks and all best wishes to you

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Sunseaandsand in reply to Catseyes2352 years ago

Hello and thank you for your reply.

Both yourself and one other member has suggested this to me.

I have had tests in the past some of which have been borderline so perhaps it would be good to request another to be done.

Take care and stay safe.

Sunseaandsand in reply to Artistic-Grandma2 years ago

Hi Artistic -Grandma, thank you for your reply.

I have read some very interesting replies to my post and it really does help.

Sorry to hear that your infusion has been cancelled. If you have been having them yearly I would try to chase it up because I do know that some people are still receiving them.

I think like everything else though it depends on which part of the UK you live in!!

From my own experience it is not good to leave long periods between treatments.

I have also been waiting for mine, but they want me to wait till I get my vaccine.

Take care and stay safe.

Artistic-Grandma in reply to Sunseaandsand2 years ago

I, also am writing for my jabs. The first one is tomorrow as I am on the vunarable list. Good luck.

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Sunseaandsand in reply to Artistic-Grandma2 years ago

That's great news. I have not received a letter yet and am also on the vulnerable list, been shielding since last March.Doctor told me yesterday I needed to go to hospital to be checked out as I had bad problems at the weekend.

I am just too scared to go, it is terrible to feel too scared to go to hospital for help.

So pleased you are having yours, I have heard of so many peolple who are young with no health problems who have already had theirs.

Take care.x

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56jennywren in reply to Sunseaandsand2 years ago

Are you OK now Sunseaandsand?

I can't help with your loss of weight problem but can only suggest as you are shielding that if you do decide to look at thyroid issues that you can get finger prick blood tests to do at home. If you look at Thyroid UK on HU there is a list of companies that supply.

SlowDragon is an administrator on there and has a list of the private companies.

Take care

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