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I need someone to explain what's happening to me (hypothyroid/chronic fatigue)

(11 Posts)
acrabadabra Mon 22-Dec-14 09:01:15

I have been on levothyroxine for 18 months. Had been symptomatic for 18 months before that. Dismissed as normal tiredness as had ds and dd (aged 3 and 18 months at diagnosis)
I was sleeping up to 18 hrs a day when prescribed 50mcgs Levo. Now on 125mcgs. I immediately felt better.
I am now tired again. It has been gradual and Levi has been increased over time. But the tiredness is not the same. Not always sleepy, just physically achey and lethargic. I'm constantly weighing up one task versus another. Eg walk to school or cook a proper dinner on a good day, have a shower or eat breakfast on a bad one.
Last blood tests are all normal or within ranges except iron which was slightly low. I'm taking ferrous sulphate for that.
I have been laid up with a bad cold for more than 2 weeks. All others in the house had it too but no days in bed or off work/school for them.
At last gp appointment doc mentioned chronic fatigue. Which, after consulting Dr Google actually sounds more like what I have. In some ways. But not others. It's not really severe but I am suffering and my family is too.
I struggle in the morning and during the day. My kids watch far too much telly. By dcs bedtime I feel a little better and by my own bedtime I can be wide awake.
As you will appreciate, my dh is getting pissed off. Because he says I'm not helping myself by getting an early night.
I can't explain it as I don't understand it either. Partly I avoid bed at night as its the only time I feel normalish and I want to spend time with dh. Nothing exciting. We watch tv and sit on our own sofas not speaking much. But it's our time. And nicer than it sounds smile
Sorry it's long but, can anyone help to explain what's happening to me so I can adequately explain it to dh.
Not sure what's happened to me but I've not felt well for 6 years and I'm so scared that I'll never feel "normal" ever again.
I'm not depressed. I'm very frustrated, esp after gp basically letting me leave feeling that nothing can be done. This is what my life will be sad

RockinD Mon 22-Dec-14 09:21:35

Chronic fatigue is often no more than a symptom of something else, which could include under treated hypothyroidism. Are you sure you are optimally treated?

SofiaAmes Mon 22-Dec-14 09:27:54

Your gp is wrong. There is lots that can be done. Get your vitamin D levels checked. Get them to check your growth hormone levels. If they haven't checked your thyroid levels, make sure they do. If your gp is not doing the tests, order them online/mail order. Do a search on mumsnet for places to get the tests done fairly cheaply.
My ds has mitochondrial disease and one of the very common symptoms is chronic fatigue. He is treated fairly successfully with high doses of L-carnitine and CoQ10 which are supplements that are needed by the mitochondria to function.

acrabadabra Mon 22-Dec-14 15:23:46

Sorry. Went back to bed. Thanks for answering.
My last appointment I meant to ask for a copy of the test results and forgot. I'm pretty sure it's just my tsh that's being tested. It just feels so hopeless. I left with an iron tablet prescription and no other help. Told that sometimes fatigue is just unexplainable by tests and that its just one of those things. I told him I was worried about my job as obviously work aren't happy with me calling in sick with "tiredness". He said they should have OH write to him for an explanation. Meantime I'll continue to look (and feel) like a big, fat, lazy cow for not just getting on with it.
As far as I know I've had my vitamin D and B levels checked. They're normal.
I called in sick again this morning so need to get another appointment anyway.
I'm most worried about my relationship with dh though. He doesn't get it but neither do I. I can't understand it myself so can't tell him. And when I try I end up crying.

PrincessTheresaofLiechtenstein Mon 22-Dec-14 15:39:15

Oh OP, I am in a similar situation but am getting by Ok (some days) because I am very luckily self employed and can afford to work very few hours, and my children are both school age. I still end up a sobbing mess occasionally over not managing normal everyday things. I had a thread running a few weeks ago on here which had quite a few helpful suggestions on what sort of things to get tested for. Sadly there are a few of us in the same boat. I was very low on vitAmin D earlier this year but unfortunately fixing that through supplements hasn't helped my symptoms at all. Am about to start iron tablets again to correct lowish ferritin. Increasing my levo a few weeks ago has also not helped.

DP thankfully very supportive but doesn't know the full extent of it because I get too emotional trying to explain.

I get what you mean about an early night - I can't fall asleep much before 11 nowadays and actually I sleep quite well then. It isn't lack of sleep causing this, there is a root cause we just haven't got to yet. Am going to look up mitochondrial disease now!

Sorry not to be much help but sending a virtual hug anyway.

acrabadabra Mon 22-Dec-14 16:01:09

Thank you so much princess!
It is comforting to know I'm not alone. I can't help worrying that I actually AM just a big fat lazy cow or that it's all in my head!
I will search for your previous thread too.

tobee Mon 22-Dec-14 16:56:59

Get your ferritin levels checked also. They are your stored levels rather than your haemoglobin which is more like working levels I believe. This can give a better idea of the iron supplements . Last year I had very low levels diagnosed along with existing thyroid issues which I'm on 100mg levothyroxine for. My thyroid took a couple of years to fully restore my functioning and 6 months for the iron. I had times of feeling tired, lethargic and dizzy with the anaemia. Even when I thought I was better with the iron after only 2 months taking it I went for a short walk with a teeny hill and felt sick, exhausted and dizzy and had to stop.

What I'm saying is, it can take a heck of a long time but I feel miles better in these respects.

So be really kind to yourself. The frustration and exhaustion can make you very hard on yourself.

I also recommend vitamin d level checks.

I know it does seem that the feeling crap is endless.

tobee Mon 22-Dec-14 17:01:01

Ps my gp gets loads of things done at blood test but hadn't routinely done vit d and so tested me. I was low. So it's worth checking. Huge numbers of us have low vitamin d which is a cause of lots of problems health wise.

PrincessTheresaofLiechtenstein Mon 22-Dec-14 17:05:46

tobee that's given me a tiny bit of hope - I am coming up to 2 years on levo and as I said I am still adjusting the dose. Maybe it does just take a long time. So glad you are better.

Hope you have a good Christmas acra

tobee Mon 22-Dec-14 17:06:14

Pps You are not a big fat lazy cow!

acrabadabra Mon 22-Dec-14 17:40:44

Thank you all. Will write a list to take to gp next time and will get all my blood test results too so I can research myself.
At least I can do that on my backside smile
And merry Xmas to you all too x

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