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If it's not thyroid what the help is it?!

(21 Posts)
MoreSnowPlease Sat 16-May-15 22:50:29

I had post partum (supposedly) thyroid problems with an overactive thyroid which I went on carbimazole for and then turned into am unattractive thyroid. Now it is normal levels (tsh 2.4) but I feel awful. A lot of symptoms have gone it improved but I am still having some really strong symptoms and trying to work out what else could be wrong. I also had a positive ANA test but docs have said that this could mean nothing or a wide range of things! I want to narrow down so I can suggest/request for things to be looked into.

So very big problems are:

* muscle weakness and pain (it hurts to even lift the kettle to pour a cup of tea)
*very site joints (knees and wrists, wrists very tender /sharp pain when I put smallest pressure on, crouching down is agony)
* fatigue (I am in survival mode just trying to make it through the day)
* breathlessness (on climbing the stairs I need to rest)
* don't feel thirst (never have really and find it really hard to force myself to drink)
*really slow to heal wounds (they are so bad they just open further and further after I cut myself for weeks)

These symptoms I have as well but they don't bother me as much

*sore teeth
* eczema on hands (with slow healing)ouch!
* achey joints
*bad at regulating temp
* vision getting a bit blury(previously excellent)
* numbness (if I raise my arm above my head for 10 secs it will go numb)

I know a diagnosis can't be made by strangers on the internet, but I would really appreciate some advice on where to start looking please, I'm miserable!

MoreSnowPlease Sat 16-May-15 22:51:29

Under active not unattractive!!

Tubbytimmy Sat 16-May-15 22:54:10

We're your thyroid antibodies tested too?.

I have a lot if not most of the symptoms that you are experiencing. Sorry I can't help with a diagnosis though, I haven't yet got a definite one myself after 2 1/2 years.


MoreSnowPlease Sat 16-May-15 23:22:09

Sorry you're the same tubby what things have you looked into/ruled out?

I don't know about thyroid antibodies, they did numerous FT4, FT3 and TSH?

SirVixofVixHall Sat 16-May-15 23:26:37

Antibodies would mean you you have Hashimoto's. I do, and I have or have had, a lot of the symptoms you are listing. Are you on thyroxine?

Tubbytimmy Sun 17-May-15 02:23:24

sirvix is correct and I do too have a diagnosis of hashimoto but again my levels remain within normal range.

I have been seen by a endocrinologist who says not all symptoms are thyroid related. Rheumatology say they are.

I have a positive ANA low ferritin, vitamin d and folate. I have had ultrasounds showing inflammation of the joints and a uptake scan showing bone disease. But not a lot of treatment though as my tsh is within range.

Maybe ask to have the antibody test as a starting off point.

Yankeepoodle Mon 18-May-15 21:26:47

Moresnow you need to get ferritin, b12 and d3 checked. All of those need to be well in range for your thyroid to work properly. Low ferritin +thyroid issues can cause muscle weakness and even wastage as well as joint pain. Breathlessness and loss of appetite are common symptoms too. Sore bones/teeth might be osteomalacia which is caused by low vitamin d (we're likely to be at our lowest this time of year). Not sure if the slow healing is part of the picture but it wouldn't surprise me. These tend to interact so being low in one can reduce your absorption of the others etc.

tubby it sounds like you know what your issues are (low in all iron, d and folate)? If you can get yours all well into the normal range, you should feel an awful lot better. I spent 18 months being convinced my thyroid was off (but with 'normal' tsh etc) and it was JUST iron (ferritin was 14). I've pretty much sorted that now and feel younger, happier and an awful lot fitter.

tubbytimmy Mon 18-May-15 22:59:17


Can I ask how you manged to get yourself feeling better?. I was treated for vitamin d once as I think one treatment is guidelines. I have been taking ferrous sulphate for the last year my ferritin remains at 8. I have given up going to the gp as I just get sent for more tests and prescribed what I have been taking for the last year which hasn't helped at all. sad

MoreSnowPlease Tue 19-May-15 15:30:23

Thanks all, I've been referred to a rheumatologist because of the positive ANA and pain I'm in.

I don't think vit d /ferritin were tested this time but I had them done in November I think and were all good so it's not that. Been looking at what ANA can mean and it's not good sad

MoreSnowPlease Tue 19-May-15 15:31:39

tubby have you tried taking your iron with vit c to help absorption?

EldonAve Tue 19-May-15 15:39:27

What about the B12?

AmyElliotDunne Tue 19-May-15 15:57:49

Sounds like thyroid! Have they given you all your numbers? Even within 'normal' range I feel like crap and have to have my levels optimised to feel human.

Hopefully seeing the specialist means more tests and further exploration, but with B12 and thyroid issues myself it just sounds too similar to be anything else. I don't know what the ANA test shows, but at least you're being investigated and not told it's 'women's problems' or just 'life as a busy mum' as both my mum and I were fobbed off for over a year before diagnosis!

Clarella Tue 19-May-15 17:56:01

Hi briefly looking at your list and the fact you've been preg and hyper, it could possibly be ferritin.

I've been extremely poorly with low ferritin recently. I did have a lot of itchy bones though (restless leg syndrome) but I was also on too much thyroxine for a while. But this could be a link too with you - muscle loss from hyper and not enough iron to regrow properly. Weak arms have been a big factor with me, weak generally and definitely actual muscle loss.

Mine was border line though, 55 it was only the itchy bone thing that led to me being put on iron, and it's taken a long time to recover. I've just found though that I was at this level post partum (and having issues, though they focussed on thyroid levels) so muscle loss was slowly over a long period of time, linked to low thyroid levels, and I think then just not enough iron in the bank to regrow easily.

Slow wound healing was also a factor, my section took longer to heal than peers and a bite I had off a child at work took ages. I now also take a big fizzy 1000 vit c every day too.

I'm not too sure about hyper levels - I assume you're on the meds still? If on thyroxine I'd want a better score than 2.4, but if not you might be ok as your t3 might be better (not sure though)

I was tested for Addisons too due to muscle loss. Might be worth seeing an endo?

Clarella Tue 19-May-15 17:57:36

Agree calcium and vit d could be factor esp if you've been hyper as too much thyroxine can affect bones.

Clarella Tue 19-May-15 18:02:32

Gosh re-reading it, exactly the same. Couldn't lift a kettle. It's been utter hell for 6 months. Couldn't work.

It could be endocrine myopathy, but I'd want to be sure all things like iron etc were maximised too.

I was diagnosed with hypermobility syndrome of top, however, I am flexible and gp thinks therefore weaker collagen so easily deteriorate, BUT I feel the thyroid issues and iron have been the main mitigating factor.

As I've started to recover I've seen a sports physio who has given me specific strengthening exercises. Without these I would still be struggling, but clearly getting thyroxine right and iron wacked up to above 80 has been the main thing.

Clarella Tue 19-May-15 18:03:52

Your wound healing sounds particularly worrying. Are you under a specialist? I think you need to get print outs and ask for referrals.

Pipnposy Tue 19-May-15 18:23:01

Might be worth looking into Addison's disease? Also autoimmune so it can be found alongside thyroid problems.

Penguinandminipenguin Tue 19-May-15 18:27:15

Are with Claralla re getting ferritin levels checked again. Mine have recently comes back at 6, which explains why I was feeling so awful, and I had some of the symptoms you mentioned. Hope you get to the bottom of it soon!

Oodear Tue 19-May-15 19:00:21

Mine was similar and (mainly ) down to vit D/calcium

tubbytimmy Tue 19-May-15 22:43:02

Hope you get some answers from rheumatology. Do you know the results from your ANA?.

Yankeepoodle Wed 20-May-15 21:58:10

tubby With regard to vitamin d, I buy my own and take 5,000 iu every day year round. I am prone to low levels so it's necessary to do this, it may not take as much for you.

I assume they have tested you for celiac? This is a common cause of malabsorption of all sorts of things and is usually the chief suspect in anemia, especially if you don't respond to supplements. Heavy periods are another culprit and are the reason for my anemia. There are various options for this, I am taking tranexamic acid to lighten my periods and this combined with liquid iron (vitabiotics or floradix) has been the answer for me. My understanding is if it's not celiacs or periods then you need to have an endoscopy and possible colonoscopy to check for a GI bleed, which is unlikely but should be ruled out.

If you haven't had all these ruled out, then you should. You should not have ferritin stay that low when you've been supplementing unless you've got a problem with absorption or blood loss. There might be other causes than celiac for malabsorption see here

Bottom line, you need to back to your GP (or find another one) and get to the bottom of why you're so deficient in a number of important things despite supplementing.

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