BBC 1 Dr in the House - Reduction in symptoms NOT a cure!

[Mdaisy]

Hi fellow members

I will read all your comments on the other post and reply in due course.

Let's hope we charities do formulate a reply to the program both stating positives and the negatives!!

Emma

[Creativeness1]

Hi Mdaisy I think program was good I personally found it useful.

I do think every individual's case is to be looked at on a individual basis.

The people featured might have been more able bodied than others.

I think every individuals medical background should be considered.

It featured the doctor actually getting to know the patient.

This would be difficult to monitor medical professions don't have the time or manpower.

It had some great ideas and seeing the bigger picture is great.

I think I would give the yoga a try.

[Mdaisy in reply to Creativeness1]

Hi Creativeness1

I agree that there were positives and negative IMO where like the removal of co-codamol, NSAIDs and reduction in medications only after other aspects like B12 Vitamin D deficiency were corrected , as they make symptoms worse.

You have to make symptoms better before we have a chance of making positive changes which of course most GP's refuse B12 injections unless the level dips under 200 pg/mL even though below 500 pg/mL you can have significant low B12 symptoms.

I do think diet can help and SIBO may be making symptoms worse but all these lifestyle changes are to reduce symptoms NOT a cure as the program seems to suggest. I believe in looking at Gut health, your Microbiome and correcting Bad Bacteria (all things I knew already) . I wish the NHS would investigate further like he did, for this I commend him but NHS don't do a test on our Microbiome. If anything good does come out of this program I hope they do these tests

Dr Michael Moseley has identified the connection between gut health and Neurotransmitters (which we know are low in Fibro) plus often dr's talk about the brain blood barrier. Gut health is definitely important but will reduce symptoms NOT cure the condition. I think we's all agree we need more research!

I just hope the overall premise of 'she was free from Fibromyalgia pain' at the end that was portrayed doesn't affect raising awareness of Fibromyalgia

Emma

[CarpaBob]

I thought the programme was good too, I didn't think he ever mentioned curing though! That's the reality of these illnesses, I would considerate steps mentioned help create periods of remission. I think it's shame he couldnt go into more details on the vitamins and thyroid connection. I have looked into the sibo for myself and will be giving the high strength prebiotic route a go first.

[Mdaisy in reply to CarpaBob]

Hi Carpabob

Top tip is you need to kill off the bad bacteria first (say it's Candida for instance) a candida diet, plus vitamins known to eradicate it then populate with good bacteria. You might herxheimer reaction meaning your body will purge and you'll likely to feel a lot worse before then feeling much better - just as a gentle warning in case you think it's making me worse and stop - you need to push through if you can

No the word CURE was mentioned as such but certainly the last segment implied that these lifestyle changes resulted in her being quote 'Free from Fibromyalgia pain'. I am just a little concerned that the medical profession and the general public may unknowingly take from this that this is all that is needed and it's a collection of symptoms rather than a illness of neurological cause (considered so by research already undertaken)

I honestly would have liked him to spell this out, that these things help reduce the symptoms but it is not a cure for these REAL illnesses that needs much more research. Just how it was portrayed to someone with little to no knowledge could quite easily jump to an assumption that the ME/Fibromyalgia community do not need as a set back in our fight for awareness, IMO anyway.

I hope this makes sense

Emma

[CarpaBob in reply to Mdaisy]

I agree it would have been better to have much more detail about the steps he put in place, I don't think it will have much impact on other health professionals as I have dealt and fought with many and none are interested in helping only medicating/zombiefying. I am sick of hearing the word normal used and pleased he used the word optimal! I feel like the diagnosis of fibromyalgia is an excuse for the doctors to give up even trying to help.

To add: I have hypothyroidism and fibro is also considered to be caused by untreated or not optimally treated hypothyroidism. Another battle I am currently having with a gp.!

[Mdaisy in reply to CarpaBob]

Hi Carpabob,

Please see my reply on other post about Thyroid and this post might be of interest.

healthunlocked.com/fibromya...

I believe properly controlled hypothyroidism will reduce symptoms but they are separate conditions. Many believe Fibro is purely untreated thyroid issues but the research for this has not been published in a peer review journal, so research continues to find the connection.

Misdiagnosis can also occur due to poor thyroid testing in the NHS so people can be misdiagnosed with Fibro only to find the symptoms are purely thyroid related.

Unfortunately , until we have research and diagnostic markers for ME/Fibro and better testing for Lyme, Thyroid etc we will not be able to limit the issues surrounding diagnosis/misdiagnosis.

Do keep speaking with your GP about your Thyroid results and I hope you receive the correct treatment.

I wish you well

Emma

[CarpaBob in reply to Mdaisy]

I have seen many gps and none are interested in listening to anything regarding the thyroid so at present I am stuck until I can see someone like Dr peatfield privately. I have a medical background myself and they still won't listen! In regards to fibro being a symptom of hypothyroidism there is evidence out there to suggest that it is the case and given so little is known about fibro and the nhs doesn't recognise hypothyroidism early enough it could be the case. Hypothyroidism is a very complicated disease which causes many of the symptoms seen in fibro and I myself had much reduced pain levels for the brief period of time my tsh fell below 1. The metabolic treatment of fibromyalgia by Dr John lowe is certainly compelling reading. Most people will have no idea if they are hypo as even if tested unless you see your own results they my well be signed of as in range as the UK has a higher tsh range than other countries like America. There are also T3 and t4 levels to consider plus various vitamin and mineral deficiencies that can really impact conversion of thyroid hormones.

[Mdaisy in reply to CarpaBob]

Hi Carpabob

Thank You for your reply

As you seem to know about hypothesis, variables, quantitative and qualitative research. Plus the added issues of diagnosis without a marker and based on subjective information from patients symptoms in the case of Fibro & ME.

One could argue that the participants may not have had Fibromyalgia and the findings could therefore be inaccurate. As all research on Fibro or ME you could say depends on the qualifications, interpretation of the physician who performed the Tender Point Test

I understand your point and have read the research from the late Dr Lowe but it was not peer reviewed as published in his own journal. It might very well be an important findings but it needs to be further research that supports this before any firm conclusions can be made.

The debate about Thyroid, Fibromyalgia and Dr Lowe has been discussed for 5 years now on this community with many having a different view point.

I hope you can understand, that I intend not to get into another debate with any member about this as we stated it all in the post I wrote when I volunteered for the charity as Administrator and Chief Community Admin of this community.

We are just going to have to politely disagree on this one

Wish you well on your journey to better health🙂

Emma

[CarpaBob in reply to Mdaisy]

I understand entirely but would like to point out that debate is a good thing. Debate is often not what is seen though on many forums this one included but personal attacks. We are all entitled to our own opinions on these matters and while the medical profession continues not to oust those doctors who do try to find the links between health and illness there will be no diffinitive answers or solutions in the near future. I personally would be very interested to see more research in the fibro/thyroid connection as well as the links to vitamin deficiencies.

😀

[Mdaisy in reply to CarpaBob]

I agree debate is healthy and happy to talk with you about this. However, unfortunately to be completely honest threads like this have caused heated debate in the past due to strong beliefs on each side (I was not involved in discussion but as an Admin had to write the post and write to all members involved at the time)

So as you'll understand this is a subject that personally I would like to see further research. I fully support any petition or campaign for better UK Thyroid testing as this is important in the diagnosis process whether anyone has both or either condition.

I hope your GP listens as they do seem to be 'head in the sand' about all of this 🙂

Do you get the line 'bit of knowledge is a bad thing ' too from the Drs In your search for answers, I know I certainly do! 😡

Nice chatting to you

Emma

[CarpaBob in reply to Mdaisy]

What frustrates me, and as a fellow health professional you will know, is that doctors seem to think they are exempt from cpd! Why they can't just say "OK I am not familiar with your points let me look into it and get back to you" I just don't know. We can't know everything all the time and it's perfectly fine to admit this but follow it up with research. In my experience gps seem to be the worst at this and this has been a huge shock to me. As a midwife I was used to hospital doctors asking if they weren't sure (also saw them ask nurses too) and had never had much dealings personally until the last decade, so I did not expect the "head in the sand attitude from the gp". I have now learnt my lesson as their failings have caused devastating results to my life and I will never trust a doctor again.

😀

[Mdaisy in reply to CarpaBob]

Hi again

It's no excuse as they could research or at least ask for a specialist input if unsure but I do think the pressures put upon them is awful and they I feel they do have trouble with a work/life balance. This again for all health professionals comes back to the workload, being overstretched etc as it was bad enough 10 years ago when I was on the wards.

In training if there is unsure nursing numbers they advise you express concerns for safety to get more staff from other areas in the hospital or more patients. But everyone's stretched and asking for more nurses and the care has to continue in reality! Again I fully support any campaigns to get more funding into our amazing NHS.

It's so sad to hear that your trust has disintegrated in this way. Keep fighting!

Emma

[CarpaBob in reply to Mdaisy]

I agree they are overstretched (the recent junior doctors programme on TV was scary to watch) but the only people who can change that are the gps themselves, they have to fight the system together! The doctors who do stand up often find themselves alone in the fight and sadly leave practice. Many practice privately or under the guise of complementary medicine. Dr Chandy here in the north east for example who fought for b12 treatment and was forced to leave due to his work. His situation is further hindered by the research problem as he is not prepared to put patients lives at risk. He has plenty of his own research but it's not considered good enough.

I unfortunately no longer have the energy both physically and mentally to fight further, but hope that at some point in the future I can afford to see one of the understanding doctors privately. (just have to wait for hubby to climb the ladder a bit at work 😁)

I will now let you get on with your day😀. 😆

[Mdaisy in reply to CarpaBob]

Thanks for the reply. I am sorry to hear that and saddened it has made you feel this way.

I know the 'magic money tree' has been used by certain politicians however money can be found when they need it, yet they cut public sector, reduce disability benefits and it is affecting the vulnerable and sick. Something needs to change!

Have a good day

Emma

[CarpaBob in reply to Mdaisy]

By the way thankyou for mentioning the herxheimer reaction, I was not aware of it and as hubby has ibs too and is going to join me in trying the probiotics we have been able to plan starting just before he has a couple of weeks off work so he can at least suffer at home rather than at work 😁.

[spider555 in reply to Mdaisy]

I haven't had all the 18 points. The rheumatologist did a few points then stopped. He seemed bored.

[hebden in reply to CarpaBob]

Me too CarpaBob. I am convinced through private blood test and high NHS TSH test that I am hypothyroid but no doctor seems bothered until the magic number 10 is reached. They take no account of symptoms only to label it fibromyalgia and send you on your way.

[CarpaBob in reply to hebden]

Ah yes I got the fibro diagnosis first and had to wait until tsh was over ten (I think it was 14 or 16) before they would treat. Treatment though is a new battle as the doctors won't allow my tsh to drop it's currently 3.36 and even though I felt better when it was under 1 they won't listen even when I explain I am more symptomatic now.

[Mdaisy in reply to hebden]

This is happening all to often, I wish you well in your journey. Keep fighting!

[fenbadger]

Lots of points here in the program

1. It made good TV. Sadly they have to or no one will watch, and in the case of commercial TV, pay for it.

2. I believe NO Dr would put a patient 2nd to other considerations. It's sometimes easy to believe otherwise.

3. choice of language will have influenced viewers' perceptions. This goes with whether we use the word cure or the phrase free from pain. I wonder if they did any extra "takes" for some of those scenes. And Although one lady asked the Dr to stay away, she was clearly quite happy for the camera crew to remain. So how much is playing to camera? I know there comes a point where you can blank out a media crew.

4. Selection process for candidates? The prediabetic lady with the hectic lifestyle had a clearly (to me) chaotic life and seemed somewhat self inflicted. Though there was a "happy ending" WE need those to inspire the rest of us to take notice. She also seemed an ideal candidate to make good TV. If there mention was made of racial predispodition to diabetes I missed it. I realise its not always easy to change lifetime habits, but from a distance, it seems obvious she was losing precious time by sleeping 17 hours - as well as the normal reactions to excess sleep - when it was clear time was short, and the night camera showed terrible sleep hygiene in only a few seconds of video. Kids in room, not their bed, tablet on . . .

Be aware I don't wish to criticise the participants. It must be borne in mind too that as with Michael Mosely the things that were tried are already backed up by reputable studies, and on TV merely demonstrate this in a more or less dramatic way. (The same is true of those shop wisely or eat well programs.)

As well as fibro I have type 2 diabetes and IBS and am a super taster. Sometimes the diets for which are incompatible. Most "healthy" foods taste vile for instance. And though diabetes suggests I take in tomatoes and onions, In some IBS advice both these are "banned".

And I cannot actually afford high protein foods. There's been some discussion on another site where I'm a member that, on a global scale recently type 2s were once advised to take regular carbohydrate, the advice changed, but with little explanation.

Emma, you make an interesting point about B12

[CarpaBob in reply to fenbadger]

Unfortunately I have had a number of doctors put me 2nd to other considerations, many of my blood results are low in range (all bone profile, full blood count and white blood count) and are consistently dropping further with each test. Mcv is raising, ferritin low in range yet they still refuse to accept that I am unwell. I had to fight both gp and consultant for b12 injections despite serious symptoms. They also refuse to believe I have less thyroid symptoms with a lower tsh and won't allow any more medication. They are happy though to give me any amount of antidepressants and painkillers and various other medications to try and cover up some symptoms. They are supposed to treat the symptoms over blood tests yet six gps I have seen in my area will only go off blood tests only.

[Mdaisy in reply to fenbadger]

Thanks Fenbadger, I believe B12 injections should be given (as he did in the program) and I am also always interested to read about the Myers Cocktail £200 each session.

It was researched and said to be beneficial in fact I may be wrong I'll check the post but I think the former founder of FibroAction had them.

She did .... see post for info

healthunlocked.com/fibromya...

Unfortunately in recent years they have become fashionable in the celeb world to get a pick up of vitamins.

I cannot see the NHS funding becoming immediately available any time soon 😐 If we could all afford private consultations....... If only!

Emma

[CarpaBob]

Just wanted to say I have looked up Nicola on twitter and she is actually doing very well and credits the show for helping her gain a better quality of life, I believe it's the cfs she is struggling most with now, so there is hope 😀

[Mdaisy in reply to CarpaBob]

Hi Carpabob,

Please know I was in no way saying her achievements aren't admirable and I have had periods of marked improvement too.

However, I merely wanted to reiterate that the symptoms may have I improved which is great but the underlying illness isn't cured and still needs awareness, research and understanding whether it be Fibro or ME.

I would never judge this lady or anyone, I think it is amazing she has changed the quality of life for the better. Realistically though, the condition still flares, you still have push & crash cycles etc as it is a real illness not a label (this was my main point)

Having volunteered for charities FibroAction (before merger) and FMAUK ... I am looking at the big picture and not her personally. I have removed the picture as I wouldn't want to cause offence

Sleep well

Emma

[CarpaBob in reply to Mdaisy]

I know you weren't 😀, but sadly I have seen many posts from fellow fibro sufferer's rant after the show and even attack her to say she can't have fibro because she was able to improve and I think it's important that others see there may be ways to help us manage our conditions. Your photo of the tweet was still a valid point 😀. I think here we have both given the balance of the show in pointing out that she is both improved (as long as she continues with the hard work necessary) and still unwell. I would have liked if the show had pointed out that it's an ongoing battle.

[Mdaisy in reply to CarpaBob]

Totally agree, the backlash towards her has been awful on other sites. She needs support and not any of this which could put her off course. The program doesn't think about the person and afterwards, just want the story! If the latter that you proposed had been stated by the Dr that it is an ongoing battle I think many wouldn't have reacted as they did, no excuse as fellow Fibromyalgia peeps shouldn't be acting badly. I just mean the program could have helped limit this. 🙂

[hebden]

Im glad to hear that the lady in the programme diagnosed with ME and fibromyalgia is still well but there wasn't much said about her thyroid problem. If she has hashimotos this would have been improved with the lifestyle changes from what Ive read about it. Also what was the vitamin injection she had and is she still receiving these injections? Ive got a fight on my hands just to get a blood test done and then only certain things are checked and results twisted and different depending on postcode. I wish all doctors had the time and knowledge to be able to test and treat us all like he does. We could all feel better and live healthier lives.

[CarpaBob in reply to hebden]

The injection was b12, it's often low in fibro and hypothyroidism, the blood ranges used in this country mean many with deficiency are missed as it's quite complicated. I had to fight for intensive treatment for many symptoms including nerve damage as my results were at the bottom of the range.

[TheAuthor]

Thanks Emma, I agree completely with this my friend x