So very tired of feeling so very tired!

[mrstigs]

Hi everyone.
I've felt like this off and on for 2 years now. Lethergic, aching and weak muscles, aching joints, brain fog. My eyesight goes fuzzy when I get tired and I find it hard to find the right words, feel dizzy off and on especially when I shut my eyes when stood up.
I have hypothyroidism, but only take 75 a day for it so presumably isn't that bad, recent blood results came back as 'normal' according to the receptionist. I also have hypermobility, but my doctor says that wouldn't cause any of my symptoms other than the fact my joints pop out of place and feel stiff and sore, and they can't do much about that. I've had lots of blood tests that apparently ruled out everything else and the doctor just looks at me when I say how tired I am. She thinks it's because I have three young kids mostly, and yes sometimes I'm tired from them, but when I feel like this it just isn't the same, it isnt.
I'm starting to feel like I'm just lazy. Like I could feel better if I just tried and it's all in my head. I take lots of caffeine tablets and painkillers and then clean the house and stuff just fine, so it is possible. Does anyone else feel this way but doubt themselves too?
Sorry if this makes very little sense, I fear i'm a little garbled today.

Hello mrstigs. I'm sorry things are so hard for you at the moment. I was like this 2-3 years ago, when I had 'sub-clinical' (borderline) hypothyroidism, borderline anaemia (score 16 on a normal range of 15-295) and vitamin D deficient. If you haven't had those things checked out already, you should. Either one of those could explain your extreme tiredness by itself.

But as well as that, I am also hypermobile, and that was the point at which (for some reason no-one quite seems to understand) my 'simple' hypermobility turned into hypermobility syndrome (HMS). Doctors are notoriously badly informed about it, so it's not surprising your doc isn't giving you good info (mine didn't either), but she's not.

If you are hypermobile and score 5+ on the Beighton score for bendiness, and have had pain in several joints for a few months, then you meet the diagnostic criteria for HMS. It is a general soft tissue disorder, and can (tho doesn't always) cause all sorts of problems, anywhere in your body where there is soft tissue. I found that all sorts of apparently random problems I'd had were/are all linked with HMS, including piles and palpitations and trouble sleeping - and oddly also a resistance to local anaesthetic.

You can find more info on the Hypermobility Syndromes Association website. They have a lively Facebook page too, where you can ask an anonymous question (if you want) and get other people's advice and opinions.

If you think this sounds like you, ask your GP to refer you to a rheumatologist. Even some rheumies are ill-informed, so it's worth doing some research to find ones more familiar with HMS (the HMA website has a list).

Good luck! :)

For anyone under the age of 60 and with no symptoms of ischaemic heart disease, it is safe, and practical, to start thyroxine at 100mcg, so 75mcg is not even a starting dose.

Also, never believe anyone who says your test results are 'normal'. This can mean simply that they have come back within the reference range. This is not good enough. To relieve your symptoms they need to be optimal.

My guess is that a lot of your symptoms are simply because you are not taking enough thyroxine. First step would be to ask the surgery for a print out of your results, with the reference range. You can then get hold of Dr Toft's book Understanding Thyroid Disorders, published by the BMA and available in Boots, on Amazon and, I believe, for Kindle. You can read what he says about optimal test results and then compare with your own.

After that, you can potentially go back to your GP and ask her why, when you can buy this book at all major chemists and it says this...she is happy to leave your results where they are and you with a load of ongoing symptoms.

You'd be very welcome on the spoons thread

www.mumsnet.com/Talk/general_health/1802346-Spooning-into-summer-life-with-chronic-pain-fatigue

I don't know if hypermobility is the same as EDS or exactly how related, but at last year's ME conference, there was this, which suggests fatigue is not unexpected:

"It’s well known, said Dr Bansal, that certain predisposing factors are associated with CFS, and people with these kinds of immune and autoimmune conditions (such as EDS) have a very high incidence of CFS, and even if they don’t have CFS, they too have chronic fatigue."

everything rockinD said

i felt crap on 75 and am fine on 100.my tsh was 4.5 on 75 and now is 0.3

i also had low iron so get all the usual checked too: ferritin, b12, vit d

Thanks everyone. I've been to my doctors so many times, I just feel so awkward about going back again. I feel like they think I'm just whining and it's not a big deal. But I will, better to have her thinking I'm a pita timewaster but do something to make me go away than feel crap all the time.
I'll phone and ask for my results tomorrow and make an appointment. I'll also print off some info on hms and see if she'll look at that. She doesn't know much about it I think, when I told her I was diagnosed at 18 with hypermobility she asked what it was, then just said 'oh, being double jointed? Well that shouldn't really cause you any problems'. I didn't have the nerve to press it any further so I just left it.

Thanks again everyone for responding. I felt so very fed up yesterday, I feel a bit more positive today.

I'm sorry you are feeling this way.

I also feel this way on and off. Last time I went to go I got tested for ferritin (which is your iron stores) and you can be low in this and not be anemic but have symptoms. Also tested for b12 and folate.

I was told I was low in ferritin and follate. I felt mad because for years I had been saying I felt tired and kept getting told all blood tests were normal such as haemaglobin, CBC, liver etc etc. gps don't routinely test for your ferritin.

Also there is a certain range that is classes as normal and it's a huge range. Same with the b12. The range was something like 200-900 And my level was 210 and was told it was normal but for me it wasn't as I was having symptoms!

As soon as I started taking supplements for the above and changed my diet massively, I felt so much better and I got my numbers re-tested after a month and they had shot up.

I've let things slip again not taking vitamins and my diet isn't great and guess what, the fatigue is back!!!

I don't know if you have had these tests yet but if not would recommend.x

Sorry to hear your feeling like this..I am waiting blood results as I have extreme tiredness for months now so much worse than when I had babies..I feel dizzy, have palps, feel nausaus time to time basically I just have no energy its got up and gone literally! Know a bit about how you feel the tiredness is exhausting..hope you feel better soon

mrstigs sorry you are feeling so awful. What is your diet like? Have you tried any strategies in this respect? Also what was happening around the time you started feeling this way?

Thanks again everyone for being kind enough to take the time to comment.
Le1980 I think I've had my iron levels checked already, but I'll make sure next time I'm at the docs. Thanks for the tip.
kissmelittleass hope you feel better soon too.
sleepwhenidie It was a few months after 3rd dc, that was when my thyroid packed in. Was on thyroxine a year then they said as my results showed in normal range when on it I could stop. So I did and felt awful, put on weight and ended up begging the doctor to go back on the tablets. I've felt a little better, but never right, and now feel worse.
My diet is pretty good, I enjoy cooking healthy stuff. When I'm really tired the urge to eat carbs is strong, but I do my best to ignore it.

What would a typical day be foodwise? And what is life like in general?

I had a friend who felt like this and swears by seeing a cranial osteopath. He's not the least bit woo normally, but was so fed up he was willing to try, and he felt it worked for him

I agree re thyroid points.

find out your last tsh results - I feel pants if I go above 1.5, am best at below 1. everything you describe is hypothyroid!

lab ranges vary from area to area - my mum read her lab range out and it was very different to mine. her tsh was 0.1 and her Dr left it at that.

also, my Dr is now saying 'we treat people not numbers'. ie, if tsh says something like 1.5 but symptoms aren't great an extra 25 is likely to really help. he also said there's no issue with having a tsh of barely nothing these days.

Your doctor told you to stop the thyroxine once it got you into a normal range?

You need a new doctor. Seriously.

Your doctor told you to stop the thyroxine once it got you into a normal range?

You need a new doctor. Seriously.

I'd go back to the Doctor, even though the Receptionists say the bloods were fine. I'm a Doctor's Receptionist and if someone is told the bloods are ok, it generally means the Doctor does not need to see you about them but if you are still unwell to make an appointment to discuss further investigations. A blood test is not the end result. Don't feel embarrassed about seeing the Doctor again. In my surgery I see so many of the same faces I know quite a lot of them by name. It seems to be in the hundreds It's getting to the point I know their voices when the order repeat prescriptions too but that's another story. So please make that appointment to see your Doctor. You should not suffer.

Yes never believe your results are normal, every time I phone for results of my blood test for my underactive thyroid the receptionst "helpfully" tells me it its normal, but I always get her to tell me each result , and am sorely tempted to then tell her why they are far from normal but I have managed to restrain myself so far, sounds like you need more thyroxine I would ask for endo referral and don't worry about annoying Gp's we have to get the help we need.

"Awaynboilyurheid* don't be so mean to the Receptionist. She is only passing on information provided by the Doctor and apart from cholesterol results we are not allowed to give any further information. Receptionists are not medically trained and you should not be asking for the results anyway. If you are not happy that the Doctor has commented that the result is normal ask to speak to the Doctor. After all they are medically trained.

At our Doctors (which I increasingly see are amazingly good):
a) Receptionists never give results, Doctors will give them over the phone.
b) I make an appointment at the same time as my bloods one to see the doctor (about a week later), I don't even tell the receptionist it is to discuss my results.
c) My GP ordered extra Thyroid related tests.

It was made very clear that once I was on Thyroxine it was for life.
Admittedly it took a long time for me to go back to complain about how I felt; after the first time I was tested it came out normal.

I know it is hard to complain and be forceful when you feel awful, which is how you feel with low thyroid. If you Doctors are really hopeless can you see another one, or is there another local practise?

Google postural orthostatic tachycardia syndrome. there is a strong link with this and hypermobility. Main symptoms are dizziness & extreme fatigue. xxx

Mrstigs - mind its ferritin test as gp's tend to talk about testing your iron when they mean your haemaglobin.

I'll certainly look into that Rooby thank you.
As for the last time, I never did understand why they recommended it. From what they guy said it was because I developed it after childbirth, and they recommend stopping it when the child gets to 12 months. So they did. Even though I was by no means hyperthyroid at that point (which I would assume I would have been if the thyroxine was unnecessary?) They tested again a few weeks later and I was still just in the normal range so it was stopped. Then restarted when I went back a few months later begging for help.
As for my food. Today was egg on toast for breakfast, wholemeal pasta salad with red cabbage, carrot, cheese, apple and raisins for lunch. Dried cranberrys for snack, then butternut squash and asparagus risotto. Drinks of green tea or normal tea with milk no sugar. So fairly carb heavy today tbf but still not too bad. Would a change in diet help in some way?

Life in general is pretty stress free. I have three small kids so have school runs and things, and a pretty energetic toddler, but im a sahm atm so no job to rush to. She's also happy to play at home on days when I feel just too sore and washed out to take her places which is good, but I just wish I had my old energy levels back. We used to be a massively energetic family, walks round national trust places every weekend, days out to farms and swimming and running around play centres... now its mostly swimming or playgroup. I can see my activity levels slipping lower and lower and that's just not me. Not what I want to be.
I do feel better today, tired but no brain fog and im not struggling for words as much. Although I took 4 caffeine tablets earlier to try and help. Tbf they don't seem to help often, not sure if that's because I try it too often or maybe I'm just immune to lots of caffeine.

I will definitely get those results tomorrow and make the appointment. Does anyone know if the receptionist can read them out over the phone or do I need to go in and ask for a copy? I was slipping into a hole of just feeling helpless about the whole thing but talking to you all has really given me back my drive to change this now.
Even if I'm left with the painful joints I can live with that. So seriously, thank you all again. I didn't realise how much actually talking about it would help.

I'll write it on my list to check with the doc Le1890 I feel a little sorry for the doc that gets the luck of this appointment bless em!

mrstigs it sounds like there is a lot more going on than diet alone will fix - I think you have had some great advice from other posters on that. Your diet sounds good though maybe lacking in protein and EFA's? If you are deficient in these then it can show (even after years of feeling absolutely fine) as chronic fatigue and brain fog - among many other symptoms. So increasing good fat and protein certainly wouldn't hurt, but as I say, it sounds like you need to push harder for more medical attention. One other thing though, the caffeine tabs will be playing havoc with your system - have you tried not taking any for any length of time?

I don't do low fat, we use butter and full fat yoghurt etc. The risotto had butter in and the pasta had cheese. I do need to up the protein I imagine though, especially as we don't eat much meat. It's mostly through eggs and cheese and chickpeas and the odd bit of chicken. I'll look into upping it more, it certainly can't hurt.
I think the caffeine tabs are useless tbh. I used them a fair bit when the youngest was a rubbish sleeper so I was tired on top of fatigued if that makes sense and they did keep me going a bit. But they don't do much for me now. I certainly have never taken them daily or normally more than once a day. Just when I was very tired and sore but needed to get something done ie: clean the house. In fact the four I took today may well have been the most I have taken in one day, but I can't say I felt any different at all. So might as well ditch them. Sometimes you just hope something will make the difference and get you moving, and I don't drink coffee (in desperate times I've tried - it's foul) .