Underactive thyroid and ME.

[Joanna-E]

Hello,

I am a 42yr old woman diagnosed with an underactive thyroid, however I have been suffering with chronic fatigue, insomnia, muscle pain and more since I had shingles over 7yrs ago. I was prescribed levothyroxine but only a very small dose as the blood tests showed a slight problem with my thyroid. My concern is that although my symptoms are similar to hypothyroidism the medication is not doing anything if anything the symptoms are getting worse!!! I have even been under the mental health services because it was thought that I was suffering from bi polar which I am not. Is it possible to have ME alongside hypothyroidism?

I am also worried about approaching the gp with this even though I have thoroughly researched all of my symptoms and it always comes back as ME. Does anyone have any advice for me please?

I have had to give up my nurse training and my university degree because of this and I really am beginning to wonder if there is any point in going on with this horrible life of mine.

[MrsSowester]

Please don't give up! It's a rubbish illness but life is worth living, there's always joy to be found somewhere. I'm slowly working my way through a small mountain of box sets and audio books. I'm also decorating and furnishing a dolls house - which is something I've always wanted to do, but never had time before. If you focus on the things you can do rather than what you can't there is still happiness to be found.

I don't know as much about ME as some of the people who post here so I can't advise with any authority. But I would definitely suggest you to book a double appointment with your Doctor for the time of day you feel brightest. Write a bullet pointed list of the things you want to ask/say and put it on the desk in front of you so the doctor can see it too. I'd imagine the doctor will take you more seriously if you've trained as a nurse.

My daughter has low thyroid levels and ME, so it must be possible to have both.

I hope someone pops up with better advice than mine. Starbys the site administrator is wonderful but has been quiet for a while, I think she's having a flare up (rest up and take care Starbys if you're reading this!).

Best wishes to you Joanna, take care, keep smiling and do/watch/eat all the things you love! X x x

[Joanna-E in reply to MrsSowester]

Thank you so very much for your kind words, sometimes just talking to someone who understands and doesn't think I am just being lazy and a hypochondriac can really help. My partner although caring really doesnt understand that going shopping can literally wipe me out for days, that housework is the equvalent of climbing a mountain to me.

I am definitely going to see a doctor and take a list of everything I want to ask, my only worry is that he is going to say I shouldnt try to self diagnose myself by going on the internet. I know it winds doctors up when patients

do that because I have sat in on gp appointments through my nurse training.

Anyway I will get gone now, need to muster some energy from some where my son and daughter are taking me out today for a mother's day treat.

Bring on the pro plus and lucozade

Again big thank you for your reply

Joanna x x

[sulamaye]

Search for my name on the site Sulamaye and you will see lots of different posts about my hypothyroid m.e connection. have you paid for a cortisol saliva test to be done, it interrupts thyroid med take up and can mean that taking meds makes symptoms worse. It's complicated, also I have a blog when I get a moment I will pm you the link. There are also lots of other things that need to be optimum for meds to work. B12, ferritin, vit D etc

[Joanna-E in reply to sulamaye]

I would be grateful for any help or advice that you might have, thankyou for taking the time to respond to my post.

Joanna

xxxxxxx

[friendlylion]

I'm 'walking rather than bedbound' and it seems it is a big challenge for many people (incl. partners) to understand how we can be up and about but then in bed for a few days.

Its definitely possible to have ME and shingles.that was me last week. Hopefully i caught it early enough for it not to be an ongoing issue which i've read it can; '85% of people are pain-free after 12 months' terrified me: 15% aren't and we're already dealing with ME!).

Drs often have precious egos and don't want to be made to feel redundant (which in certain situations is rapidly becoming the case whether they like it or not).

But often they do appreciate patients taking proactive steps (especially when Dr accepts patient probably does know more about it than they do - often so with ME which might not have 'existed' during their training - or menopause when Drs got one day in total on hormone system) ...

So it might be helpful to say... 'Ive read ..... [quoting reputable source - e.g I've seen Dr Sarah Myhill quoted on this forum a few times]....and they suggest.... tests.... blah... results.... blah.... What do you think, Dr?'

I.e .always bring it back round so that it looks like they are in control.

Remember you don't have to do what they say. Some GPs have reputation for not listening, others are highly empathic. Some seem to fluctuate (maybe depending on their day / case load / pension plan?). I know its a bind, but you can alway change Dr - or surgery!

It is posible to get a lot of support to get through Uni with ME.

I got DSA (disabled students allowance) for ME (and dyslexia).

Whilst it can't possibly guarantee you to get through it, DSA providing transport (taxi fares), 'non-medical assistant' e.g. enabler - someone to note-take in lectures and generally help organise you outside the Uni, and 'academic support' to ensure you understand what is being asked of essays etc and that you are writing it the way they like it is enormously helpful.

I wouldn't have known if it hadn't been for someone with ME in the year 'above' me telling me. I'd send you a link but i'm not that techie.

But its part of Student Finance England - at least they pick up the bill.

But being a govt. behemoth, they certainly aren't perfect. E.g .i must have got at least 3 letters a year from them telling me that i made too much money (?!?) so wasn't eligible for the coming year. Apart from the fact i had no income beyond benefits, it hadn't changed from year to year. Luckilly my support explained that computer-generated letters such as this are sent out routinely. Whether jaded or not, they suggested that SFE's bottom line was to try to STOP people using the money allocated.

Next year it is all being cut again and many of the people i know are expecting to lose their jobs. But there have been cuts every year - do you remember once upon a time there was such a thing as a full grant!! - and it will continue in some form. (and hopefully be fully reinstated before too long as its purely discriminatory otherwise and 'everything' has got to change for the better before too long.....

I dont know if theres any such help for nursing, but don't see why not.

I know there are now very clear Nursing Assoc. policies re dyslexia and other neurodiversity.

I don't know that much about thyroid really.

Long before i had my 'official' diagnosis of ME (must be 5 years ago now - although symptoms since 16 and i'm now 48) my person-centred counsellor suggested i should get it checked out as thought i showed symptoms of under-active.

Tests have always concluded i am in 'normal' range. but generally with such tests you have to be in life-threatening position to be considered anything else.

E.g. test for coeliac disease / wheat intolerance has you eating wheat for 30 days and then testing for difference when you don't ....... um, do they not get it that if you have any awareness, you will do all you can to put yourself in 'better' position - thus rendering certain tests skewed or meaningless?

But if you are 42 year-old woman your thyroid levels and hormones generally may well be changing. There's an organisation near me called Menopause Self Care who exist to help woman (and men!) become better educated about this period of their lives (which certainly could start at say 35) and equip themselves to choose their best courses of action.

In some areas - Bristol and Cornwall certainly - there is a specialist team for ME. These people should know something (although the person who actually gave me my diagnosis was an idiot in my humble opinion) ...

The current person is absolutely brilliant and helped me in more ways that i can say...

Unfortunately not everywhere does have the service, and in some areas they simply don't replace staff when they retire / go sick / head to private sector.... But look into it. the more we ask, the more they may realise we exist!

Don't give up

[msBrightside]

We basically all have to be our own certified specialist in CFS.

It's a hard thing to deal with but don't take no for an answer with GPs I'm always saying we know best! Also we tend to need to educate the GP. It took over 2 years for me to be diagnosed so don't be disheartened it is a long process because of a bad system of dealing with patients with this illness. It isn't even the professional individuals fault it goes deeper than that there is processes they could be following that we have to remind them. Ask to be referred to a rheumatologist you may be lucky and get a good one alternative help is probably worth seeking I'm going to try a homeopathic doctor. Mindfulness (relaxation) massage and vitamins and pacing are things I'm working on that help

[Joanna-E]

I am astounded at the wonderful responses that I have had from you all, thank you doesn't seem to be enough. It sounds weird to others I am sure but I am hopeful that I can get a diagnosis of ME or CFS, I hate being like this and not knowing what is wrong.

Friends and family are holding their tongues I am sure especially when they come round and I am still in my pyjamas. My life feels like it is crumbling away, I dont have the energy to even shower or brush my teeth.

I am not convinced that this is my thyroid because the doctor prescribed my meds over four years ago and I am not getting better but much worse. I have gone from being happy and upbeat to a point where I dont want to go on anymore. I hate myself and my life.

[Ansteynomad]

Come and join us on the Thyroid UK forum. A lot of people with an ME/CFS diagnosis, including myself, actually have thyroid problems and symptoms disappear once these are properly treated.

If you repost on the Thyroid UK forum you’ll get lots of good advice, but they will want you to get a copy of your test results with the reference ranges, so they can advise you.

[chrissybell]

My daughter has ME/CFS and has just been diagnosed with 'sticky blood' I thought the baby aspirin may help some of her ME symptoms, but not really. She was diagnosed with ME at age 14 (she's nearly 19). Are you in the UK, as she has been under an ME specialist - at St Helier hospital in Carshalton. He's been great for her - she has Vitamin B12 jabs every 2 weeks and they really help. She does take melatonin to help her get to sleep (as well as between 25 - 50mg of amitriptyline) each night - but she swears the melatonin works better. She does see an osteo every two weeks (which costs us a fortune) - but helps her aches and pains (as does the amitriptyline). Worse symptom at the moment is her headaches - after 4 years she's finally seeing a neurology GP specialist on Monday. Professor Khamashta at the UK Lupus Centre has said he's happy to try and help her with her headaches, but to see the referral person first and see if they can prescribe anything to help. Her ME - she spent 6 months in bed - from April to September, then had 4 hours schooling a week until the following April, where she has just done about 50% of her schooling. She has learnt to 'pace herself' she has a life, but if she has a good day/night she suffers a couple of days later. Luckily she has a job as a bank patient service assistant at a private hospital - where if she's working and not having a good day she can slope off early, as she only gets paid for the hours she does. To help her ME symptoms she also takes domperidone - for nausea (prescription only) vitamin D - 3 x normal dose in winter as most ME patients (as well as APS) are often lacking. CO-Q10 - helps the mood. L-carnitine - helps if you are doing nothing and putting on weight. It's the first drug the specialist told her to take. Zinc - helps the vitamins work better, and she lives on nurofen (tried naproxen - don't work as well) for pain. If you're in the UK - you can check NICE guidelines. If you can tick most of the symptoms you have ME - and should be referred to a specialist (within 6 months). If any other country - sorry I can't help much more. Her specialist said people with ME's sleep is unusal - normally when we sleep we re-charge our batteries. ME patients can sleep for 6, 12, 18 hours and the batteries just don't charge. She also drinks red bull if she is doing anything really tough (A levels etc). Best of luck. xx

[KLR22]

Do you have antibodies to your thyroid which would mean that you have Hashimoto's? If so, you will get worse and should be increasing your thyroxine as the antibodies will gradually destroy your thyroid gland. It is definitely possible to have M.E and an underactive thyroid or Hashimoto's and your M.E may well be made worse by not being adequately medicated with thyroxine. This can cause all sorts of problems, physically, mentally and emotionally.

Karen

[jevaner]

Hi Joanna, underactive thyroid belongs to ME - I have the same for many years - They found in a University hospital, that T4 (thyrax ) is not transferred to T3 - so I take also T3 (Cytomel) - which made a big difference (specially not feeling so terrible cold anymore.