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I cannot cope with this exhaustion any more!!

(38 Posts)
Flamesparrow Tue 20-Oct-15 14:06:47

I feel like I spend my life going back to the doctor saying "I'm tired". They must think I am a crazy hypochondriac.

It isn't depression sleeping. I know that. I am medicated for that. It isn't "hide from the world" it is "omg my body cannot keep moving any longer".

I'm on levothyroxine and my levels are seemingly correct.

I am on iron pills.

I have a good diet, moderate exercise (when my body lets me), I drink plenty of water.

Yet once again I am sat in tears because I have things I want and need to do, but I have slept for most of yesterday and today because I couldn't physically stay awake any longer.

I go to the doctor and it is always "stress" or "depression". I'm 34, but a weekend away destroys me for most of the following week. A normal day with three kids and ill partner breaks me.

The thought of the rest of my life like this terrifies me. I am already sat here worrying about having the energy to take the Dude to cubs later.

I don't really know what I expect you to say, but it needed to all be out of my head.

Tinfoiled Tue 20-Oct-15 14:14:18

Has anyone suggested CFS/ME as a possibility?

Flame Tue 20-Oct-15 14:49:11

Never, just stress and depression. I am aware that it has been a shitty however many years and I am stressed, I don't dispute that.

PacificMouse Tue 20-Oct-15 14:52:46

Yes if your blood tests are coming back ok, then I would really investigate ME.
what other symptoms do you have? Headaches, digestive problems, waking up at night, aches and pains in the body, feeling cold?
If any/some of those are there, I would rely go back to the GP with that list and insist fur an ivestigation for ME.

Tinfoiled Tue 20-Oct-15 15:12:33

The fatigue you describe sounds too extreme to be down purely to depression and stress. And the fact you suffer 'payback' - days of extreme fatigue after relatively normal levels of exertion - is something that can be characteristic of Cfs/ME. It doesn't mean you're not depressed or stressed as well as it often goes hand in hand. You need to go back to your gp.

SomedayMyPrinceWillCome Tue 20-Oct-15 15:15:21

Have you ever been investigated for Addison's? It can sometimes be associated with depression, anaemia & underactive thyroid

Pleasemrstweedie Tue 20-Oct-15 15:20:55

Do not go down the CFS/ME route until you have exhausted all possibilities. Once you do that, everything that happens to you will be blamed on it and you’ll never have a cat in hell’s chance of getting your health sorted.

“I'm on levothyroxine and my levels are seemingly correct.” That’s the bit that jumped out at me from your OP.

I’d put money on your being under-medicated.

How much levothyroxine are you taking?

Is your TSH at the most around 1 and are FT4 and FT3 towards the top of their reference ranges?

It would be worth your getting a copy of your last test results (you’re fully entitled to one) and putting them up here for starters. There’s a few people around that can interpret them.

What about B12 and folate, and vitamin D? Have you had those tested and if so, where were they?

Let’s see what we can do for you.

C4thy81 Tue 20-Oct-15 15:24:16

Ask your doc to refer you to a consultant dealing with that area they will investigate to find out the root cause fingers crossed for u smile

PacificMouse Tue 20-Oct-15 15:57:35

Yes I fully agree about having everything investigated before saying its ME.
ME isn't an 'illness' (not that people who have ME aren't unwell. They are, very much so!) It says 'you are clearly exhausted and unwell but we have no idea why' (ie diagnosis by exclusion rather than because you find something).

Tinfoiled Tue 20-Oct-15 16:01:26

I don't think cfs/me would be diagnosed until every other option was discounted anyway - there's usually quite

Flame Tue 20-Oct-15 16:02:23

I've got an appointment tomorrow (I increased my antidepressants and am explaining why... my mood is far better as a result). I'll ask for my thyroid results then.

The amount of times I have felt that I am under dosed but they say it is right is what makes me dubious. My symptoms all fit pre-medication... the exhaustion, fuzziness, aching legs and hips, sleep is a mess (I have always had vivid nightmares, but when I am exhausted they get far worse and then my sleep is more broken, and repeat).

I'll go see what my last lot of results are that I had (it may be from a while back but the dosage is the same). I'm on 75 one day, 100 the next. They decided 100 a day was too high, and 75 too low.

Thank you so much for listening to me.

Tinfoiled Tue 20-Oct-15 16:02:31

Oops! There's usually quite a strict diagnosis criteria for it.

Flame Tue 20-Oct-15 16:05:50

The last lot of results I can find is from a year ago.
TSH 0.07
T4 17

I am fairly sure that there were ones after that though when dosage was tweaked so that the TSH was more normal. I'll ask tomorrow for the most recent ones.

Pleasemrstweedie Tue 20-Oct-15 16:26:53

If you had had a thyroidectomy, your baseline dose would be worked out as 1.6mcg per kg of body weight. It might be worth doing that calculation and seeing what you come up with. The recommended starting dose these days, in enlightened circles, is 100mcg, if you’re under 50 and don’t have any signs of heart disease.

Where I live an FT4 of 17 would only be mid-range. I wonder if your GP is dosing by TSH only and is afraid of it going too low, regardless of what is happening with your thyroid hormones?

MoriartyIsMyAngel Tue 20-Oct-15 16:31:57

I felt the same way on Levo. The GP always pronounced my blood test results 'perfect', but I was so tired I couldn't stand for more than a minute without needing to lie down.

T3 has been wonderful for me. It's expensive on the NHS so my GP started cutting my dose only months after allowing me to try it. I now order it online, which I'm not 100% comfortable with, but at least I'm a fully functioning human being again. Perhaps ask your GP if you could try it?

And yes, B12, D3 and magnesium are the classic three (along with iron) that hypo people tend to be deficient in. It's worth getting your levels checked.

Pleasemrstweedie Tue 20-Oct-15 16:36:31

Good post moriarty

Clarella Tue 20-Oct-15 17:12:24

I agree double treble check all the thyroid stuff and don't underestimate how it can easily go skew wiff if missing just one dose a week, not taking it properly (lots of medicines interact with its absorbtion) etc.

Out of interest which anti d are you on? Sertaline complicates matters with thyroxine. Other medicines are oral contraceptives, omeprazole - and iron too. Ferritin needs to be over 70 by the way. But even then it can take ages to recover your health.

I was diagnosed with hypermobility syndrome which has some symptoms of Cfs and me if I get into a down ward spiral, and a mess up with thyroid meds and a baby triggered this. My physio is similarly extremely cautious about Cfs and ME dx as its a pigeon hole never to return from. The hms is a bit like that already I notice.

HOWEVER looking at the techniques used to combat Cfs - pacing, bean theory, yoga, muscle strengthening and stretching methods, meditation ( not great at that my self!) short hitt training and cbt methods COULD all be useful to look at, without diagnosis.

Start by looking at bean theory (or spoon theory) and then pacing cbt methods for ME.

The exercise you do - what do you do? Without realising it your core and muscles could be quite weak which could be adding worsening fatigue etc. it's an extremely slow process to build up when dealing with fatigue as you have to invest some of your energy to do so.

But first stop is to double check all your levels as mentioned above.

Flame Wed 21-Oct-15 10:18:14

Tsh was 2.3, t4 about 14 (brain dead). They said that was normal but thyroid UK says over 2 isn't...

Anyway more bloods, and the word "stress"

Flame Wed 21-Oct-15 10:18:44

I'll be back when I have the new results!

Corabell Wed 21-Oct-15 10:27:13

Some people need their tsh to be around 1 or even surpressed to feel well on levothyroxine. For others levothyroxine doesn't restore them to full health. I was a fatigued zombie on levothyroxine even though my blood results were fine/ within the normal range.

The addition of t3 helped me regain some energy and reduced the fatigue dramatically.

You need to pursue the thyroid treatment. The doctor should be treating your symptoms not just focussing on the blood results. As previous posters have said b12,iron on vitamin d all need to be optimal too.

Pleasemrstweedie Wed 21-Oct-15 10:48:58

Get your thyroid bloods done first thing in the morning and fasting is the advice given by Thyroid UK.

TSH of 2.3 is too high for someone on treatment and my guess is that FT4 of 14 is well into the bottom half of the reference range and therefore far too low. If FT4 is low, then FT3 is low as well, which is you feel carp.

Flame Wed 21-Oct-15 19:01:10

Ok I am finally back on my PC so I can give proper replies.

Looking at the CFS list there are some things that don't click, mainly there being a trigger point for it all, it has been more gradual build up that comes and goes.

Many of the things do match Addison's, apart from unintentional weight loss grin.

My other symptoms (excluding the exhaustion) are dizziness (which I am always again told is stress rather than imbalance), unsettled sleep, aches - mainly my hips.

The new bloods are testing TFTs, full haematinics, iron profile, FBC, renal, liver, bone, glucose... I don't recall having the full haem before so there is that. No T3 though, how wrong is it to add that...?

I agree with the CFS/ME meaning that everything would be clumped into that from there on in. Very much like with the depression, "Oh you have had a history of depression, it must be that."

Doing the mcg per kg calculations I should be on 125 which I feel makes more sense based on how I feel.

T3 is most likely my next avenue smile Why did your GP stop it? (I know cost, but presumably he didn't say "Oh it costs too much so you can suffer again now")

I'm on fluoxetine which afaik doesn't interact. If I take iron then I take it with a good six hours apart from the levo. I'm also on dextroamphetamine which again, I have googled and doesn't appear to affect it. I was told a while back that dairy can cause problems so again, I don't have dairy for a good couple of hours either side of levo.

My iron levels are naturally high, so when I have all the symptoms of anaemia, I still only show at the low end of normal. Stuff like that is why I wonder why they don't treat symptoms rather than just rely on "normal" ranges. (To be fair, I was the same with pregnancy... I knew conception date, yet because scan dates said "Your baby is this age" they told me I was a month less pregnant than I was.)

I tend to use a lot of CBT methods already, and use the spoon theory to explain why I bail on people. Thankfully people seem to "get" it.

Exercise depends on the amount of spoons and goes from walking, to running, to muay thai boxing. I find when I am able to exercise I have far more stamina than I realise.

My plan of action is to get the bloods, and then when the results are back make an appointment with DP's GP (we're at the same surgery but I tend to see someone else). He seems very good at listening and understanding, and if I take DP with me he can both help explain, and the guy will have a more full picture of everything as he knows how family life is with DP's illness etc.

Wow... that was more of an essay than I expected!! Thank you so much for not just telling me that I am crazy/imagining it/stressed.

Clarella Fri 23-Oct-15 21:37:42

Hi flame, I'm really quite ill if my tsh is 2.5. It has to be between 1-0.3 for me and tbh most people.

A mums netter recommended this book and I'm recommending it to you as it could me extremely helpful; it's called understanding thyroid disorders by Dr a toft and it's by the BMA - key point as you can show it to your GP. It states - in a big red box - symptoms not numbers must be treated. It also explains why lower tsh is often better to feel well. Therefore if you meet with "it's ok, your thyroid is fine" - no, push to try a little higher. For me this translates to 125 4 days a week and 150 for 3 days. It also notes that even then, sometimes some patients need t3. I saw an endocrinologist (who ruled out Addison's but I had lost a lot of weight and muscle - but I just do- ) who said it's totally fine to be surpressed if you feel ok.

Give I time though, it can still take 4-6 months to actually feel a lot better once tsh is around 1, and everything else needs to be right too.

Regarding iron, just as you mention it being high - total long shot and highly unlikely, but my aunt was poorly for years and years always being fobbed off by gps, then finally recently a sharp young GP joined the dots and they found she has heamachromatosis. Afaik it tends to appear in women post menopause. I was having very anaemic symptoms despite ferritin of 50 (not totally normal but they didn't act on it till I was really showing symptoms of rls which is linked) though now it's something to keep in mind in the future as my dad is a carrier (unlikely that I'll get it but not impossible). Symptoms can be insidious in onset and lots of fatigue.

But that tsh is too high!

StrictlyMumDancing Fri 23-Oct-15 21:45:28

Have you ever had your B12 checked out? I have pernicious anaemia as well as hashimotos and find that they both can produce that hit by a truck sort of exhaustion. B12 and thyroid issues are quite often linked too, but B12 is very rarely checked as standard - even when complaining of fatigue like you are.

ChopOrNot Sat 24-Oct-15 09:57:12

Not something I would normally recommend - but have you tried upping your Levo yourself - just for a few weeks?

I did this - was on 75 a day (v sensitive to it) so started to just take 75 one days and 100 the next. Within a couple of weeks I felt "normal again. When I went back to the Dr and told her this she couldn't really argue.

I suggested the same to my mum. She had been on 50 a day for decades. Her tests were always "fine". She had never questioned it. When staying with her one week and seeing her drop off to sleep every evening about 9pm (like I used to) I said try upping your dose. She did the same - upped to 75 every other day and then went to Drs - she is like a new woman. And lots of ancillary symptoms (for her and me, heavy periods, joint pain etc) also cleared up. And thyroid blood results still "fine" but symptoms treated.

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