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What am I missing? Unknown illness.

(31 Posts)
PrincessTheresaofLiechtenstein Mon 24-Nov-14 21:45:45

I am at the end of my tether with this (well, I say that, I get upset and/or raging and then just bloody carry on). Just wondered if there was anything anyone could suggest.

Won't bore you with a very detailed history but am on levothyroxine for my thyroid, have been for nearly two years. Been getting normal results for a few months. Have also been treated for very low ferritin and very low vitamin D levels. Also been normal for a while. No coeliac disease, no anaemia. No raised antibodies. No inflammation. Nothing untoward in any of my many many blood tests in the last six months. Am sure I am not depressed, though I occasionally feel panicky (this has got better this year).

And yet. I wake up sort of ok each morning and as the day goes on I can barely make it through. Walking up the stairs slowly clutching the banister. Legs feeling so heavy. Occasionally knees achy but it isn't pain as such that bothers me. Getting up from kneeling I sometimes feel weird and as if I will black out (never have). Feel like that standing in queues too. I now have to think ahead and plan my day so that I can rest frequently. I am struggling with work though I do very few hours.

Had some other minor niggles in the past which resolved with my treatment so why is this all still happening? a few weeks ago out of the blue I felt totally normal again for about two weeks. Was over the moon. Then it all came back.

If anyone has ideas of what I can be tested for I would be very grateful. GP is nice but at a loss.

RubySparks Mon 24-Nov-14 21:52:18

Could you try a higher dose of levothyroxine? Also has your B12 been tested? I have hypothyroidism and coeliac disease and have had low vit d and most recently low B12 (treated with injections and this has helped a bit).

PrincessTheresaofLiechtenstein Mon 24-Nov-14 22:17:12

Thanks for replying ruby. Yes, B12 fine. GP adamant that higher dose of levo not needed, and tbh I had to drop down a bit at the start of the year as was over medicated (not just going by bloods, I definitely felt hyper!)

Le1890 Mon 24-Nov-14 23:09:50

Sorry you are going through this. Do you know the level of your b12? Also level of ferritin?

I've found that when I'm in the 'normal' range I can have symptoms depending on what level. Apparently there are recommended optimal levels of b12 and ferritin and I'm way off on both. Infact I just make it into then'normal' bracket but my gp said it's fine coz it's normal!!!x

PrincessTheresaofLiechtenstein Tue 25-Nov-14 09:32:27

thanks so much le1890. Feeling pretty low at the moment. I can't remember the levels except that B12 was definitely good - I think on the last test ferritin had dropped back to under 40 which although normal is not optimal. do you think it might just be that causing the tiredness? how do you boost your levels? If I struggle to keep ferritin levels normal there must be something underlying that's wrong?

RockinD Tue 25-Nov-14 12:20:53

"Been getting normal results " How normal is normal? Are your FT4 and FT3 in the top 25% of the reference range? If not you could still be symptomatic.

Add that to the fact that your ferritin is low (needs to be at least 70 and preferably 100) and your B12 may not be over the magic 500 (in range is not sufficient) and you could also be picking up symptoms from here.

Finally, if you have low TSH, high FT4 and lower than expected FT3, you might not be converting your thyroxine and may need different meds.

You need to pick these possibilities off one by one to find the cause of your continuing symptoms and eventually you will find what works for you.

PrincessTheresaofLiechtenstein Tue 25-Nov-14 13:57:27

Thanks Rockin. I don't think I have recent ft4 and ft3 results, been tsh only for the past few months. Will get re-tested.

AmIDoingThisRight Tue 25-Nov-14 18:27:42

Hello Princess,

Just a thought - have they checked your blood pressure and artery function at all? Some of these symptoms chime with me, turned out I have a very mild and treatabke heart quirk. Am on a couple of tablets a day and feel brilliant now.

Might be worthh considering, especially with the heavy legs and exhaustion.

BestIsWest Tue 25-Nov-14 21:02:31

How is your Vit D now? The heavy legs and difficulty climbing stairs sound very familiar to me as I have severe Vit D problems. Can you squat? Get out of the bath?

Has your calcium been checked?

PrincessTheresaofLiechtenstein Wed 26-Nov-14 10:42:11

thanks for more ideas, I really appreciate it. Blood pressure is fine, sometimes on the lower side. There are heart problems in the family though, so I will ask if there is anything there to investigate - how do they look at artery function? Would it be an ECG or something? I do occasionally feel like there is pressure on my chest if I've been standing too long.

Also blood sugar fine - forgot to mention that before.

Vit D is definitely optimal, I responded really well to the supplements. I find squatting etc hard but can manage - it's mostly the weird head rush that prevents me doing a lot of bending etc.

I am not sure about calcium, will have a look back at tests but I don't have all the recent printouts.

I thought GP had been quite thorough but looking at it now maybe not!

BestIsWest Wed 26-Nov-14 17:04:20

Also have a look at POTS

LlamaWoman Wed 26-Nov-14 18:53:29

Gosh I am very confused after reading this.

I am reading with interest because I have very similar symptoms to you.

I too have been diagnosed with low ferritin. I feel so much better than I did in the Spring of this year - when my Ferritin level was 6/7 and I felt like a zombie - breathless, dizzy,tingly arms and legs,hair loss etc.
By August my level was upto 30 and the GP was pleased and told I was in the normal range. When I went back last week for my bloods my ferritin had dropped to 19,so I am once again on a higher dose of Ferrous Sulphate.

I too suffer with the heavy legs. The past few days especially I have really had to pull myself up the stairs using arm strength and the bannister.

How can I have been told my levels are normal at 30 if on here people say 70???

AmIDoingThisRight Wed 26-Nov-14 20:12:11

I had an MRI and a CT scan (not in the UK so can't advise re NHs) but they were looking for a particular thing, which was found. I don't know whqt my blood readings were though.

This is like looking in a mirror. I've been getting exactly those symptoms for months and months. Yesterday a colleague caught me trying to haul myself up the stairs and was v alarmed for me. So far the only sense I've managed to get out of the doctor is that my blood pressure is on the low side and to keep taking iron tablets.

Mine also comes in fits and starts. I felt awful yesterday but was fine today etc. At my worst I am pretty much just falling over/falling asleep on my feet. My body keeps leaning over to the left and I have to lie down to avoid just keeling over to the side.

I honestly wouldn't wish it on anybody.

PrincessTheresaofLiechtenstein Wed 26-Nov-14 21:10:15

So sorry to hear others suffering too. Have googled POTS and would say that is a definite possibility. Sounds like the test for it is quite simple.

I have not told anyone about it, as I don't work OTH during the day and can usually manage the school run and meeting people for coffee etc without giving myself away. But occasionally there are times when I am very obviously dragging myself around and I can see people sort of wondering what is going on. I am embarrassed to say I feel tired as it sounds pathetic without explaining the full extent of the symptoms and if I started doing that I would probably cry.

llama* I only found out about my thyroid issue 2 years ago due to hair loss - I didn't feel then as I do now - and I found out then that iirc you need ferritin of at least 70 in order for new hair to grow? So there is obviously an optimum level.

PrincessTheresaofLiechtenstein Wed 26-Nov-14 21:12:27

Do any of you find that you are better in the morning? I sleep well and get up without too much difficulty, and can go up and down stairs ok - not exactly boundless energy but ok. After the morning school run it's like I have suddenly aged 30 years.

BestIsWest Thu 27-Nov-14 06:09:18

I mentioned calcium because I have those symptoms too and I have a condition called primary hyperparathyroidism. This means I have high calcium levels in my blood which has all kinds of side effects. It should be easily remedied by removing a parathyroid gland only they can't find mine.

PrincessTheresaofLiechtenstein Thu 27-Nov-14 08:55:36

That sounds awful, best. I know that I have had a parathyroid test recently, and again, told it was normal.

BestIsWest Thu 27-Nov-14 20:43:54

That's good to hear princess

LlamaWoman Thu 27-Nov-14 22:58:29

I had my thyroid tested earlier this year (before they found my super low ferritin). The first time it was borderline hyperactive but the detailed follow up thyroid bloods they did after that came back normal. It was shortly after that they tested my Iron.

I feel better than I did (I can think clearer and dont have numbness and tingling like I did) but I am still a long way from what I would call normal. I am still hauling myself up and down the stairs and can only gaze at my running trainers that actually have cobwebs on them through lack of use now. I have upped my Ferrous Sulphate tablets again and am eating so many dark green vegetables I will soon be looking like a dark green vegetable!

I do sometimes wonder if I have some mystery disease that is behind all this. I am 42 and feel like I am a little old lady most of the time.

Superworm Thu 27-Nov-14 23:29:17

Can I ask how you were tested for coeliac disease?

Your symptoms sound very similar to mine before I was diagnosed. The lightheadedness in particular I had a lot. I would sway and have to hold on to things.

I also had joint pain, numbness and tingling in my hands and feet. I had a foggy head that made it hard to function and even holding a conversation was a challenge some times. I had lots of other 'ailments' which all felt unrelated at the time but ended up being linked.

The tiredness though was unbelievable. I would literally really struggle not to fall asleep in public. I honestly felt like I was dying.

My coeliac bloods were negative and I was diagnosed by endoscopy in the end. It's quite common apparently.

PrincessTheresaofLiechtenstein Fri 28-Nov-14 11:16:39

Wow, superworm must have been such a relief to get a diagnosis after that. I have had bloods done on two occasions but I don't have anything in the way of gut issues that I think would persuade the GP to refer for an endoscopy. And no family history. Maybe something to look into privately.

llama hope you continue to improve. I too have the feeling there is something underlying and feel I shoudn't be like an old lady at 39!

I have seen the GP today and she pretty much dismissed (in a nice way) the idea of looking at ft3 and ft4 etc. but took blood to retest tsh and ferritin. She is happy to refer to an endo if no improvement though so maybe an endo will be more open to the idea of poor conversion of thyroxine and we can go down that road.

Did the sitting/ standing blood pressure and ruled out POTS.

I would like to think it is just the lower ferritin causing the issues but I didn't feel this way when it was first tested a couple of years back - and my level then was 9! And my tsh was 11. I felt worse soon after starting levo and just kept waiting to improve as the tsh started dropping. Finally I felt fine after a year and thought that was it, we'd got the dose right, but feeling well only lasted three weeks and I then was back to feeling crap again.

MeeWhoo Fri 28-Nov-14 11:24:00

Have you considered chronic candidiasis? Do you suffer from thrush?

PrincessTheresaofLiechtenstein Fri 28-Nov-14 11:51:24

Hi mee - no, thrush is something I have (luckily) never had. will have a look at candidiasis - I had a friend with ME a few years back and she was convinced she had it but can't remember much about it.

Rootandbranch Fri 28-Nov-14 13:04:56

I am also fatigued to the point where I would find it impossible to hold down a full-time job and run a home. I work part-time at the moment and struggle with that. I am hypothyroid (take 100mcg levo) and had a ferritin level of 4 last year. It's now gone up to 8 (whoop di do!) after supplementation, but I don't feel massively less tired.

Really wonder if it's my lifestyle or my diet or something, but I don't eat THAT badly.

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