Glucosamine query

[capricorn]

I have painful areas all over my body and also suffer from lower back pain. I have been to physio but she has had to semi discharge me as I am too sensitive to touch for her to treat me other than exercises that I do at home. I went back to my GP as suggested and I queried Fibromyalgia, but he dismissed this and said that it was the new 'in' ailment and people get diagnosed when other reasons can't be found, He could tell I wasn't happy and then said, well do you want me to put on your records that you have Fibro, cos the only treatment is anti-depressants and pain killers!. I refused and requested that we check my VitD levels first.

The results came back at 67.7 (50 - 125). Should I be higher in the range to feel benefits? I asked my thyroid consultant if the pains could be due to my thyroid (or rather lack of as removed in 2011 due to cancer) and he said no.

So to cut a long story short and after some research, I have now (yesterday) started on Glucosamine, which I bought from Holland and Barrett.

My question is should I continue with my VitD 1000iu per day and the 1500 Glucosamine daily? I've recently stopped the vitD as I was getting rib pain and this seems to have stopped since stopping, a coincidence maybe? Plus roughly how long do you think the Glucosamine will take to kick in?

I'm really frustrated as up until about 6 months ago, I've been managing really well since my TT - but this back pain has forced me to give up work and I now spend most of my days indoors as I do sewing for a living.

Thanks Sue

[editfmrt]

Hi capricorn. sorry to hear you are feeling so unwell.

A few things jump out at me from your post:

1. Your thyroid consultant answered the question 'could it be my thyroid' as No - where have we heard that old chestnut before. Do you have recent thyroid test results to post on here as many people get that answer and later find their test results were not optimal.

2. Have you had vitamin B12 checked and if yes what were the results? Vitamin B12 deficiency is common with thyroid conditions the same as vitamin D and can give rise to the symptoms you describe - especially the back pain.

3. You may hate me for this one but I never thought I would say agree with a GP - his words are music to my ears about fibromyalgia diagnosis. You may not think so but he is being wise and thorough to say other reasons could be found - he is protecting you from a label that you may never escape - doomed to painkillers and anti depressants. If that was me I would avoid that diagnosis like the plague.

4. Your older posts indicate you have had vitamin D deficiency for some time and the levels you post now are a bit higher than before after supplementing. Its difficult to tell without reading everything right through so have I read that correctly? Have you tried taking magnesium with the vitamin D? There are several posts - one recently from Edysia that says this is essential. Following that post and further research into that combination it seems that this can help with reported side effects of vitamin D like the rib pain you talk about.

I'm sorry I can't help with the glucosamine question thou as I have no knowledge of this.

Hope this helps and forgive me if you have been down this road of investigation before.

[capricorn in reply to editfmrt]

Hi editfmrt

Thank you for you reply, I will try and answer in the order you query:

1 - I have complete faith in my consultant as although he is not from ENT or an Endo, he is an Oncology Consultant who specialises in the Thyroid and has been brilliant so far

.

My latest results are as follows: (Remember that I have had a TT due to cancer)

T4 - 30 (12-22) 6 months ago 32.6 (so they are coming down)

T3 - 6.7 (3.1-6.8) ditto 7.1

TSH 0.01 (0.3-4.2) ditto 0.01

He is aware that the T3 and T4 are still elevated but is happy with them atm, however at my next blood test in six months, if they are still the same or higher then he has suggested reducing my daily levo dose from 150mcg to 125/150mcg. alt days

2. - Unless B12 is checked routinely, then I haven't had a special test for it. I still need to collect my results so will check once I have them.

3. - Fibromyalgia, was only mentioned as I have some of the symptoms but don't tick all the boxes. There is no way that I will ever take anti-depressants or daily painkillers unless I really have no other option, but I couldn't imagine things getting that bad. I'm not too good at taking tablets full stop so to take anything I really don't think I need is not something I would contemplate.

4. - Yes I have VitD deficiency for some time and apparently I was supposed to have been prescribed a loading dose back in Feb last year, but it transpires I was incorrectly prescribed the normal 1000iu and I have continued on this dose on and off for the past year. About 4 weeks before the last blood test, I had doubled the dose to see if it would make any difference and I believe that is when I started getting the rib pain, but that only ever came on when my back was painful and then the pain radiated eventually round to the right hand ribs.

Thanks again editfmrt x

[editfmrt in reply to capricorn]

Hi Capricorn. Thanks for the update.

1. It is so good you have a good endo you can trust. It would be very wrong Od me to comment on the test results as I have no experience of TT following thyroid cancer. He has a plan which is good but I do wonder why the wait of six months to re-test if he already knows the levels are too high. Could you be checked earlier?

2. Good to check if you have been tested. B12 deficiency is often missed and it can cause permanent nerve damage if the spinal chord is affected. I really do urge you to get this checked out. Here is a link and further down it gives the list of symptoms. However not everyone has all of these and some with a severe deficiency can have only a few signs like back pain so please don't dismiss it just because you may not have all of them or only a few. It really is too potentially serious to ignore. If you haven't already been tested then perhaps your GP would do it but please remember the ranges need to be much higher for good levels.

patient.co.uk/doctor/Pernic...

3. Good - too many people get abandoned once they have that diagnosis. Super (and rare) your doctor has warned you about that.

4.Oh my - so many seem unable to treat vitamin D Deficiency correctly. It's difficult for you if it causes side effects so perhaps the info about magnesium in combination may help that. However, there can be other reasons for pain that radiates like you describe that should not be ignored - if you have stopped vitamin D then the pain should have gone away. Might be wise to get that checked.

I'm not sure this has offered anything you didn't already know but do wish you all the best and hope you get the answers you need to get better.

Warm regards xx

[greygoose]

Hi Capricorn, I'm curious, why did you start taking the glucosamine? I thought it was just for joints. Do you have worn out joints?

I agree with editfmrt about the fibro. That is wonderful! Pity he can't then go on to see that what you are experiencing is more than likely down to thyroid because most people diagnosed with fibro actually have un/under-treated hypo.

Hugs, Grey

[capricorn in reply to greygoose]

Hi greygoose, thank you for your response.

I went into Holland and Barretts yesterday to look for Devils Claw as I'd read that it was good for lower back pain. After chatting with the assistant who seemed to be very knowledgeable, she suggested the glucosamine. As the Devils Claw was fairly expensive I decided to go for just the glucosamine. I actually have no idea when it comes to supplements and what I should be on or what goes with what so can be easily swayed.

I do have the start of arthritis and a DEXA scan has shown the higher risk of bone fracture, so I don't think the glucosamine will do me any harm, but feel now that I perhaps should have stuck to my original plan to get the Devils Claw.

As for under treated hypo, please see my results in my reply to editfmrt. If anything I think I'm probably over-treated judging by the blood results. lol

I look forward to hearing what you think

[greygoose in reply to capricorn]

Well, all I know about glucosamine is that it promotes cartiledge growth in the joints but you then need chondroitin to fix it to the bones. Maybe someone else can help here, I don't know. But personally, I wouldn't trust an assistant in a health food shop. I don't suppose it will do you any harm but will it do you any good?

As to your bloods. Yes, they could be taken to mean that you are over-treated but bloods are only a guide and the main thing is how you feel. Over-reliance on blood tests can cause patient suffering.

Now you think you might have fibro, so that says to me that you are not over-treated and could possibly do with an increase. Your hypo symptoms haven't all gone. After all, for someone with no thyroid 150 mcg is not such a high dose. There are people on much higher.

Your doctor can only know just so much, he isn't inside your body. It is up to you to monitor your symptoms and know how you feel and guide him to treating you, not just do as he dictates. Learn as much as you can - read, read, read. Don't take anything unless you have researched it fully and are fully satisfied that it will do you no harm and might possibly do you good. We are lucky in some ways, we have the internet now and can be more knowledgable than our doctors. However we are unlucky in that they have invented blood tests and no-longer treat by symptoms!

Hugs, Grey

[Silver_Fairy in reply to capricorn]

I take H&B Glucosamine&MSM complex. I take one a day (three is recommended) and after six weeks I had a huge improvement in the joint pains in my knees and the cracking in my neck. We have also given Glucosamine (no other ingredient) to our elderly dogs, It has worked for all four of them and we noticed the difference after six weeks with them too. You can get different mixes of ingredients, some with chondroitin. I have tried different ones over the years and they all seem to work for me.