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How long did it take you to get diagnosed with M.E.?

(23 Posts)
GimmeIrnBru Sat 24-Nov-12 19:05:27

curlypoo (love the name, btw!) I agree it's a small amount and makes me wonder if it's actually doing anything to help with the Hashimoto's.

GimmeIrnBru Sat 24-Nov-12 19:04:17

CFSKate - I feel like I cannot do as much physically after I've done a period of exercise like swimming or 30 min walk. I need to rest on the sofa or go to bed. I shouldn't be like this, I'm too young to be like an O.A.P.!!! I have already had one of my neighbours comment 'I had three children to look after on my own at your age, and a full time job and I was never as exhausted as you are'.

curlypoo Sat 24-Nov-12 15:11:53

I have to agree that 25mcg is incredibly low and you need that reviewed. I have thyroid disease and i also know another friend who has had appalling symptoms and a terrible GP and was very very poorly for years. I wonder if you could see an endo privately. If you find someone recommended from here maybe?

CFSKate Sat 24-Nov-12 15:00:23

wiki says levothyroxine is synthetic - maybe a natural one would suit you better?

There are lots of reasons you can be very tired apart from ME.

You say you feel worse after exercising - in what way?

GimmeIrnBru Sat 24-Nov-12 13:38:32

I will write down on a piece of paper about the low dose of thyroxine that's been prescribed for this length of time and then see what the GP says when I go for the appointment. Thank you RockinD for your advice. I am not convinced that it is just thyroid related though, however I'm not a medical professional either, so will have to see what else can be done. I just don't want to be told 'that's life, we all get tired with the stresses of modern life' hmm like I was told the other day. That's very helpful - not!

RockinD Sat 24-Nov-12 12:35:24

All your symptoms, plus your Hashis diagnosis and the small amount of thyroxine, suggest that what is wrong with you is that your Hashis is being badly managed.

I would take some persuading that you have ME with that outstanding.

You need to get those test results....

GimmeIrnBru Sat 24-Nov-12 10:00:53

I was first prescribed 150mcgs daily in 2005, then it went down to 75mcgs daily after several months (after being reviewed by the endocrinologist) and for over four years now I've been on this tiny dose of 25mcgs daily, and a friend who is a pharmacist also questioned why I was on such a low dose, but also argued that maybe that's all my body needs to keep the thyroid gland functioning well. I've never been convinced. But what can you do? The GP has never reviewed it, never asked how I've coped on this low dose. But then I've never brought it up because I've been more concerned about my symptoms of exhaustion, tiredness, lethargy, etc. You get the picture...

fuzzpig Sat 24-Nov-12 09:39:28

I got my dx on Wednesday. This was 4 months after becoming really really unwell - I had a chest infection which led to severe muscle pain etc, but I then confided in the doctor that I'd been feeling exhausted for over a year before this, and had just put it down to starting work etc, but actually it was way beyond normal tiredness IYSWIM.

I was lucky enough to be referred to the CFS/ME specialist clinic in St Barts hospital, and went there this week where I talked with the professor for 2 hours and had a physical exam. He said he is almost certain I have CFS (unfortunately just need to repeat a couple of blood tests first), and he said I also have POTS - postural orthostatic tachycardia syndrome - which is basically where your blood pressure drops and your heart rate increases when you stand up, leading to horrible dizziness.

I am very pleased how understanding he was about my mental health too - I have had a lot of problems with depression and abuse in childhood, and all but one GP (the one who referred me) have basically said it is depression and not a real physical illness. We talked loads about my history and he said that all the stress I have been through is what made me more vulnerable to this illness.

There's a lovely fluffy support thread here if you want to have a look. But I quite understand you don't want it to be ME. I don't want it to either, I wish it could be something more treatable but all those things have been ruled out. I am glad to have a label now though, and I do feel optimistic that I will beat this, even if it takes a long time.

RockinD Sat 24-Nov-12 09:21:25

Firstly, a substantial number of people never get right on thyroxine or thyroxine alone.

Secondly, you are only taking 25mcgs? Is that what you have been taking since diagnosis? The guidelines are now that unless the patient is elderly or has cardiac issues, the starting dose is 100mcg! Most people need 100-150mcg -some need quite a lot more.

25mcgs is probably enough to knock out what thyroid function you have. AT one point I was put on that dose of levo and it turned me into a zombie. It sounds to me as though your GP does not know how to treat Hashis.

I would suggest that when you go to your appointment, you ask the GP for a print out of all your blood test results from 2005 and we'll take it from there.

Don't assume you have ME - on what you're saying it is more likely that you are not being properly treated for your Hashis and any accompanying problems.

GimmeIrnBru Sat 24-Nov-12 07:42:28

I don't want fobbed off with antidepressants because I'm not depressed. I just want to know why I'm constantly fatigued all the time. Obviously I'm hoping it's not M.E. as there's no cure/treatment for this. I would rather I was told it was something else, but I'm not sure what? Appointment made to see a GP in over a week's time (a different GP from last week though, don't want fobbed off with the diagnosis of 'emotional stress' when I've been like this for over 10 years). Do you get a referral to a psychiatrist if you're query M.E. or if they cannot determine a physical cause for the exhaustion?

GimmeIrnBru Sat 24-Nov-12 07:38:52

levothyroxine, CFSKate. 25mcgs daily.

CFSKate Fri 23-Nov-12 21:49:27

GimmeIrnBru - what sort of thyroxine are you taking?

CFSKate Fri 23-Nov-12 21:47:28

page 7 and 8 have table of symptoms of ME lots of useful info

GimmeIrnBru Fri 23-Nov-12 21:29:37

I don't have any results I can post, as the blood tests I had done were back in July this year. Fairly recent.

@ RockinD yes, I was diagnosed with Hashimoto's thyroiditis in 2005. I am just not convinced that it's anything to do with my thyroid levels, tbh. Others seem to cope well on thyroxine after their diagnosis and not complain of these levels of tiredness after a few month's of treatment. I've been on thyroxine for over seven years now! Not made a jot of difference.

froggers1 Fri 23-Nov-12 21:10:00

Took me a year and i got told I could have anti D' the end i had a full medical at a private hospital and the doc diagnosed me there. I am now well and have been for 5 yrs or so. I tried everything but the thing that really worked for me was Mickel therapy....sounds mad but it works. The theory is that your hypothalamus gland is overactive and you need to reset it to get back to normal....I tried nutrition, acupuncture, etc etc before this and nothing made a difference...

awaywego1 Fri 23-Nov-12 21:04:13

I got an ME diagnosis fairly easily, but you do want to try and get everything ruled out first as there is no real treatment and once you have the diagnosis EVERY symptoms you experience is ME. I was diagnosed 15 years ago but am really unconvinced and have finally got an appointment to see a neurologist next week and I also found out I had a v severe (5) vitd deficiency last year.
Good luck though-its horrible feeling poorly all the time-I'm still there and wouldn't wish it on my worst enemy sad

RockinD Fri 23-Nov-12 19:41:54

Do I understand from your later posts that you are being treated for hypothyroid?

If so, then it is highly likely that your thyroid tests, while within range, are not what they should be and that you have associated vitamin and mineral deficiencies.

Have you got any results you could post?

Oh, and I was NHS for everything apart from one thyroid test.

GimmeIrnBru Fri 23-Nov-12 15:03:46

At my last visit, I was told I could prescribed a mild dose of antidepressants if I still haven't improved (!!) but I am not depressed. I have a fairly good lifestyle compared to many, no money worries, life is good besides the crappy-ness I feel everyday.

GimmeIrnBru Fri 23-Nov-12 15:01:52

Over the space of the past ten years I've had routine bloods to check thyroid function and have believe it's been my thyroid making me feeling this way, yet others seem to report after a few months of using thyroxine that they feel slightly better, or gradually improve as their dose is tweaked month by month. I have never felt any better. So I personally do not believe it's anything related to the thyroid.

GimmeIrnBru Fri 23-Nov-12 15:00:17

p.s. Thank you for responding to my post smile

GimmeIrnBru Fri 23-Nov-12 15:00:03

I have had a blood test to rule out anaemia, and was told thyroid is within normal ranges. Was diagnosed with HT in 2005 (after DH said my tiredness was not 'normal', that someone in their twenties should not be falling asleep and exhausted from very little activity). I have been this way before having children, over all roughly 10 years, maybe slightly longer. It is now getting to the stage where I'm getting worse and not coping very well. I need answers IYSWIM?

Glad you finally found out what is wrong in your case, but sadly I've no option but to keep trying different GPs until someone is willing to help me. I don't have private health care as an option.

RockinD Fri 23-Nov-12 13:11:30

I got diagnosed no trouble at all, by a GP and two endocrinologists who were ignoring a severe ferritin deficiency, a Vitamin B12 deficiency and a severe Vitamin D deficiency. Now these have been addressed (with no help from the NHS), I am pretty much well.

Be very wary of any GP who just tells you that your test results are ‘normal’. They may be in range, but far from optimal. It’s a good idea to get copies of your test results and keep a record.

ME is a dustbin diagnosis and the NHS would have been quite happy to chuck me on the scrapheap with something for which they say there is no diagnostic test, no treatment and an infinite variety of symptoms.

What have they done to rule out other conditions in your case?

GimmeIrnBru Fri 23-Nov-12 09:11:41

I've had all physical problems ruled out with blood tests now, am not depressed, but wondering if I could possibly be suffering from M.E. Constantly tired all the time, have been like this for over 10 years now. Changed my diet, tried exercising (feel worse after this) and now realise whatever is wrong is a long term thing... How long did it take you to get diagnosed? Did you have to see several GPs before you were taken seriously?

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