A little story about someone diagnosed with CFS/ME.

Last year my hubby’s friend was talking about his wife’s diagnosis of CFS/ME, she was off work for 6 months with depression (given Ads) and had various blood tests (all within normal ranges). The symptoms matched CFS/ME (1 in 300) and so she was sent to a specialist clinic and support group sessions to learn about pacing, coming to terms with being ill, CBT etc. armed with a brochure and CD (which I later looked at – so depressing and unhopeful!) Nothing could be done and she was left to ‘cope’.

So I stuck my nose in, and said, my doc suggested CFS/ME too after my Thyroid op , I thought it was a bit of co-incidence and have begun taking VitD for starters. You need to get her last few blood test results, print outs, to make sure she’s tested for Thyroid, irons, ferritin, folate, B12 and Vit D to start with. He got them and presumed I knew about everything! Nope only just researched a few. All irons were low range & TSH 1.5 (not too high but no idea what time the test was taken). No VitD test, not even when specifically asked for – I said you should have tests before taking supplements.

Anyway, he got her some D3 drops, B12 and ferritin anyway, (and she’s now avoiding gluten too). It’s a big step to take your health into your own hands, but he’s had a brain tumour and said 'life’s too short!' sometimes you just need a little help.

I knew she was feeling better as she’s back at work now, but today he came and told me he had accompanied her to the doctor and said that she was better, no thanks to them! (The doctor noted the improvement with surprise) And that they should consider simple vitamin deficiencies before labelling folks with something so hopeless, she wasn't depressed at all! (not been taking ADs for a while it seems).

I'm posting this in case it helps others with a diagnosis of CFS/ME, the symptoms CAN be something else, and there IS hope, please keep fighting for an answer. Jane

[helvella Administrator]

There are times that a nose must be stuck in.

Would be interested to know where she is on a repeat thyroid test. If that were possible. (Of course, would really want FT4 and FT3!) But that might be my intrigue rather than for her benefit!

Rod

[Hidden in reply to helvella]

More tests for me to look at on the way! (may post them if that's OK) Yes of course I suggested full TFTs plus TPO ab, calcium, cholesterol, adrenal and haematinics too (little hope of full TFTs from the GP 'tho). I wish I had as much faith in my limited knowledge as they do! 1 down, a few thousand to go! J

Not sure about the buspirone test 'tho (someone at work has just had this for ME)

[Clarebear]

Great news that your hubby's friend is feeling so much better well done on our suggestions - just shows how important iron, vitamins and minerals are - wish the GPs were as well up on it xxx

[Hidden in reply to Clarebear]

I'm just glad one person sussed out that sometimes we have to take our health into our own hands, and fight! She couldn't do this on her own (luckily her hubby stepped in) and this is the first problem we face, so many are too ill to fight for an answer! J

[Hiphypo in reply to Hidden]

Absolutely agree - and it is frightening, don't you think, what the consequences of not acting would have been.

[sisa1975]

My husband and I tried sticking our noses in my father-in-laws health problems, telling him about vitamin deficiencies and about possible thyroid under-treatment (he's been diagnosed as hypo about 5 years ago - latest TSH still over 3.0). His partner complains of his constant mood swings, forgetfulness, he has recently had heart problems and has high cholesterol. He is on 100mcg Levo plus many other medications for his heart and cholesterol. Despite my husband and myself telling him about my own significant health improvement thanks to taking matters more in my hands, he will not listen and he just keeps saying that he will only do what is recommended to him by his GP. He won't even take vitamin D or ask for some basic vitamin tests. It is so frustrating that he doesn't want to help himself. He is only 65 and says that he just wants to cope with his health situation as it is.

[Hidden in reply to sisa1975]

Frustrating - and puts you off trying to help doesn't it? Sadly we are conditioned that doc knows best (OK they do mostly, they're trained to spot something immediately life threatening, but chronic disease training is lacking - in my humble opinion!) and some folks will only learn from their own experience. I did, I knew I wasn't 'anxious' and asked why can't my symptoms be something physical? They were (6 years later found a nodule) and when they removed half my Thyroid then it was CFS/ME? J

[marram in reply to sisa1975]

That's such a pity. Just wanted to say a BIG THANK YOU for the "only 65"! My doctor told me when I was only 63 that I should resign myself to getting old! I told him that I was not old and to be honest I plan never to grow old!

I was on 100 Levo and statins but I stopped the stains of my own accord because they made me so ill.

It is very sad that many people of my generation are so stuck in a timewarp that they refuse to believe that a doctor could be wrong, or that anyone other than a doctor might understand their condition better. I suspect that he finds making the transition doubly difficult because of his illness.

His partner can help him by making sure he has foods which contain Vitamin D such as oily fish (does he enjoy salmon?)liver, eggs (not the baddies they are made out to be), button mushrooms, plus encouraging him to spend time every day outdoors to get sunshine. Generally speaking, with a really good diet and time outside he can increase his vitamin D tremendously. Many breakfast cereals are fortified with vit D although I personally don't like breakfast cereals, many people eat them every day!

Other than that, It's difficult to see what else could be done to help him. It must be very frustrating becsue we know that self-help is really the name of the game with thyroid disease.

[Hiphypo in reply to marram]

you are so right - it's known as the 'white coat syndrome'!

[sandi in reply to sisa1975]

Sometimes it isn't a refusal to help ourselves, a rejection of help from others or a total faith in the doctors, it can be fear of making things worse. When you are or have been very ill and consequently unable to cope with the basics it can be very scary to take the risk of further damage. Yes, I know that taking into into your own hands may work and you may get better but what if the opposite happens? This is a very real fear for lots of people especially to those who live alone.

[greenginger in reply to sisa1975]

Hi I tried to do the same for mum who has been hypo for 10 years or so. I suggested vitamins especially B vits due to a red tongue and iron due to anaemia. Plus she has high cholesterol and fatty liver ( never drank alcohol ever). Her thyroxine has not changed in 10 years although her health has worsened.

She refused to ask for her blood results or have them done more than once a year or see an endo. Just keeps taking statins and meds for high BP. She stated it was her business and the doctor knows best. she is 70.

[akcoop]

That's a really nice report, thanks, and confirms all my experience for better and worse.

It's such a shame that 'authorised' approaches are so blinkered and unhelpful a lot of the time.

Just been reading Breakthrough magazine from ME Research UK (meresearch.org.uk if you want to check them out) and so much info and research now linking ME to immune disorder, which of course then knocks on to thyroid health. Much food for thought there as a path to self-help in the meantime.

Thanks all, good to plug into the support here from time to time and offer my own nuggets if they can help.

All the best, Andy

[sidneymark70]

Please dont all sigh in disbelief, but what is CFS? ( do have trouble with all the shortforms) Thanks!

[Hansaplatz in reply to sidneymark70]

Chronic Fatigue Syndrome

en.wikipedia.org/wiki/Chron...

[helvella Administrator in reply to sidneymark70]

You are very much not the only one. Which is why I produced this document - so far as I have been able, I have included all the shortforms that appear here frequently:

dl.dropboxusercontent.com/u...

And, everyone, feel free to send me a private message if there are any you think I should add.

Rod

[headinjuryhypo]

I know of several cases where people have been told they had CFS/ME who were later found to have pituitary dysfunction. You can read one of them on this link bmj.com/content/346/bmj.f19... This is about Edward Barker who had three head injuries and suffered dizziness, tingling, numbness, tinnitus and fatigue and other symptoms, and was given the short synacthen test, which the endocrinologist said ruled out pituitary problems. However this test does nothing of the kind. He was eventually diagnosed with growth hormone deficiency and hypoadrenalism, both caused by pituitary damage probably stemming from the head injuries. Another two stories can be found on investinme.org/mestory0041.htm and investinme.org/Article-650%... The two ladies concerned, Christine Wrightson and Jill Mizen also fell foul of the short synacthen test and were eventually found to have pituitary problems, probably from an autoimmune cause.

It's public knowledge that there are between 500,000 and a million cases of undiagnosed hypopituitarism in the UK today ( bbc.co.uk/podcasts/series/m... Inside Health April 9th 20 mins into programme ) and it's likely that the fatigue they suffer causes them to be misdiagnosed with CFS/ME. This is a huge, huge number of undiagnosed people who ought to be getting more help than counselling and exercise! Replacing missing hormones would give them their lives back. All the best, Joanna

[helvella Administrator in reply to headinjuryhypo]

And there is a very strong tendency for the professionals to assume that hypopituitary conditions are always very obvious - missing out the many with lesser but still important issues arising. I have seen all too many here about whom I have suspected some level of pituitary disorder.

Rod

[Hidden in reply to headinjuryhypo]

thank you for those links, very interesting, my Dad was discovered to have acromegaly when x-rayed after he hit his head, but he had had it for a while before 'tho, the pituitary is very vulnerable to injury too. Also, talking to others with whiplash and cervical spine injuries/anomalies having a neck injury and then thyroid problems seems common (IMHO) as it's a bit of a 'bottleneck'. Then again the pain medications and treatments don't do the Thyroid etc. any favours either, or chemo or radio therapy for other problems. J

[Hidden in reply to Hidden]

IMHO - sorry, 'in my humble opinion'.

[headinjuryhypo in reply to Hidden]

Yes, it's horrifying how easily these important bits of us can get damaged, how many causes there can be. I've noticed on this website a growing appreciation that alongside thyroid deficiency there can be adrenal/ACTH deficiency too - in other words, 2 of the pituitary hormone 'family' can be knocked out. I do think that in those cases other pituitary hormones could be affected too, such as the sex hormones and growth hormone, and people should check them out. All this fine-tuning of thyroid medication is good, but might be a bit like mending a tiny hole in your sock when your trousers are coming to bits. (IMHO!)

[Hidden in reply to headinjuryhypo]

Lol! yes the times I've mended those darn socks to 'hone' my darning skills (did embroidery too!)

Having been here for at least 3 years (and thankfully finding actual help whilst panicking about my thyroid nodule - from being told the 'cancer' word 20 times - I admit I couldn't listen to what doc said, all I could do was count!) I know that it isn't ALL about Thyroid, there are underlying links, but it is a major player, there are other pieces in the jigsaw, & it's never easy!

So I'm looking back at the building blocks/causes too (and nutrients aka minerals/vitamins) as my Dad knew all about this deficient stuff with animals, farmers did since the 1930's - there's at least 13 common nutrients, if low can cause deficiency (but can't ask him as he snuffed it 11 years ago, as they took his GH off him in hospital, despite me taking in his meds but policy was to start clean - [I can find no words] except I learnt, wished I'd asked loads of questions before then!). I'm trying to find his notes and meds he was on. (he wrote a lot and in bad handwriting like me!).

Anyway my current quest is to ask folks about this 'buspirone' test for ME (cortisol and prolactin as far as I am aware) pituitary produces 9 (known) hormones I think, would you know anything of this? I try and do one thing at a time as I get easily confused and distracted otherwise. J

[nobodysdriving]

thank you for this blog and well done to you for helping them so much xxx

[Hidden in reply to nobodysdriving]

I've helped one person to have just a little empowerment and question why, that's all I wanted, anything else is a bonus! xx

[thecookiemonster]

Hi there, I have CFS/ME diag(96), and the specialist at Broadgreen wanted me to take anti depressants, I refused, I had never taken anti -d,s in my life, and I wasnt prepared to start at 44. I had all my bloods done for Vits a couple of months ago, before I went to see my Endo, and all is good, I think that has something to do with my diet, I have always ate healthly,only occasionally eat processed food, and I swear by garlic, although I have read on this website some not so good things about too much garlic, but it works for me. When I have my ME days it horrible you just feel drained, but I know people who have been wheelchair bound with ME, so every day I thank God, that I just have the tiredness, oh and the bonkers bit ,ME/CFS sufferers have "mind fogging" days, which used to upset me terrribly, now being in my 60th year, I just think, what the hell, if people want to laugh, let them! Glad your friend is feeling better. Kath

[Hidden in reply to thecookiemonster]

good for you Kath - when you say vits are fine have you actually asked for results? (fine to them isn't necessarily fine for us!) for example Vit D in diet doesn't really cut it (it's from sunshine or supplements). J

[thecookiemonster in reply to Hidden]

When I checked my Vit D with the Endo, he did say that the results hadn,t come back as it takes a little longer. But everything else OK regarding adrenals. Thyroid is not quite right, got another appointment in July, so will ask then about Vit D - you don,t like bothereing them, although Dct Brown said if I was worried about anything just to ring the Hospital, which I thought was very nice. I,ll keep you posted in Admin, as I know, results help others. Kath x

[rosetrees]

The symptoms are ALWAYS "something else. The trick is finding out what it is. And that's what doctors don't want to do. The question is why don't they?

[sandi in reply to rosetrees]

CFS dr speak for Couldn't Find the Source?

[rosetrees in reply to sandi]

Got it in one!

[Hidden in reply to rosetrees]

or Couldn't (be bothered) to Find the Source. J

[vajra]

Good going SR - it's always a great feeling to help.

You know this well, but getting involved with others tends to involve treading such a fine line. In that it can't be about forcing anything.

Input can inspire some fresh ways of looking at the situation. Perhaps as a part of helping them get started on taking more ownership of themselves - but there are those that flat don't take stuff on board too.

Which is fine because we're all free to make our own calls on these matters. Perhaps they actually are taking responsibility for themselves, but are on a different path to what we might choose.

i.e there's at a given time probably a relatively small number that are in the market for 'help'.

I'm quietly convinced that we each at an unconscious level decide what out our life experience is going to be, and that it's always for good reason...

ian

[tavy]

yes \I was diagnosed as having ME and told after visiting an ME clinic at a Nottingham hospital, I was terrified! I was determined that none of that was happening to me. In the end after much fighting and finally 2yrs 7months a blood test proved I needed thyroxine. so keep fighting people

[Ansteynomad]

CFS is the only diagnosis I have had and that was given to me when my Vitamin D was 12 (>50) and my ferritin was 16 (15-150). The whole thyroid thing is a separate issue, but I feel so much better for fixing those two things, without any help from the NHS in the end, that I can cope with the hypo symptoms.

I know so many people with a CFS/ME diagnosis, but although I have spoken to them about my own experience, most seem to have the mindset that they have their diagnosis and there is nothing they can do. If only I could get across to them how wrong they are!

[Hidden in reply to Ansteynomad]

I agree - I have not accepted my GPs suggestion of ME/CFS (what a thing to suggest right after I had half my thyroid out!). You were VitD & iron deficient then, but they still said CFS? J

[Ansteynomad]

Yup (and hypothyroid)

AN