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second autoimmune disease?

(34 Posts)
hashtagwhatever Thu 14-Aug-14 23:00:04

I will try to keep this short by just writing down the main bits. I have been unwell for the last 19 months or so and was quite quickly diagnosed as having hashimoto thyroiditis. I am on thyroxine and some vitamin supplements as a few tests keep coming back low. Iron, folate and vit d mainly.

But my symptoms lessend none and not all fit a thyroid problem. So I am under rheumatology right now I have tested positive for ANA and have recently had ultrasound scans done of my joints which have showed inflammation. I'm not due to see the rhuemy for another couple of months, but would like to know is it looking likely that I have another autoimmune disease.
Ms has been ruled out by mri. But I still get pains all joints. Pins and needles unlike the usual these are really painful and have a weird inner tremor/vibration feeling within and awful fatigue.

I would like to just try and prepare myself a little for the outcome, has anyone had a diagnosis with similar symptoms.

Sorry its so rambly

MyFairyKing Fri 15-Aug-14 08:33:07

Unfortunately, once you have one autoimmune disease, you are more likely to also have another one. It sounds like they're thinking a kind of inflammatory arthritis? I have similar symptoms and was diagnosed with Rheumatoid Arthritis in 2009, I also have an autoimmune eye disease and now a query over Systemic Lupus. Low vitamin D is very, very common in people with autoimmune diseases. You may find that you perk up a bit once your levels have been normal for a while. I know I did. It wasn't a miracle cure but I did feel a bit less foggy.

Sorry, I've rambled too. Just trying to say that I empathise and you're not alone. flowers

RockinD Fri 15-Aug-14 09:34:24

Sounds like classic symptoms of vitamin B12 deficiency. Has this been tested? Your level needs to be over 500 to avoid neurological damage, but it's quite easy to raise, even if your GP says you're 'normal'.

BigPawsBrown Fri 15-Aug-14 12:15:57

Coeliac is autoimmune and would cause those symptoms

hashtagwhatever Fri 15-Aug-14 12:30:33

Thank you all.

I have been tested for coeliac bloods taken and b vitamin 12 should I ask for a print out of my results?.

I said I was diagnosed quickly with hashimoto thyroiditis which I was but only because I ended up in a&e for a third time with awful palpations and asked could my antibodies be tested as well as normal thyroid function. I do also have dodgy guts as in when I go to the toilet its loose and 3 or 4 times a day. I have told the gp this she doesn't seem concerned but it wouldn't be true to the thyroid as I should actually be constipated.

I am so sick and tired of being sick and tired. Up until this happened I never even visited the dr for anything. And its putting a strain on relationships. I feel like nobody gets me you look ok there for you obviously are.

It's nice to know that other's on here have more of a understanding.

PoshPenny Fri 15-Aug-14 17:31:28

many recommend a gluten free diet if you have hashimotos, I can't get a diagnosis of hashimotos but have found tremendous improvement in all symptoms by following a GF diet for 9 months now. lovely to have the confidence to let a fart go in public again IYSWIM. and when I have inadvertently consumed gluten, I really suffer...

weegiemum Fri 15-Aug-14 17:38:47

I was diagnosed with RA about 7 years ago (strong family history) and then 2.5 years ago with CIDP, a Demyelinating polyneuropathy (also autoimmune, and broadly related to MS which two of my cousins have, and widely in the same area as Parkinson's, which my grandad had).

I'm looked after mainly by neurology (the CIDP is the biggest ongoing issue, I get monthly IV treatment) but see rheumatology annually - currently my RA is easily controlled by occasional ibuprofen.

As a result of both I have pernicious anaemia (B12 deficiency) and get injections every 3 months. Also take high dose vitD.

awaynboilyurheid Fri 15-Aug-14 21:14:03

Another hashi's here, so I can fully sympathise how one little thing like your thyroid can cause so much upset and so many different symptoms, when I saw a very good Endo, who sadly has since passed away he said Hashi people should all take Vit B12 supplements , Vit D3, and iron as we will never absorb all we need from diet alone due to our gastric problems. Gluten free really helps. I too get the internal tremor feeling and many others. Just wanted to say its expletive deleted horrible having this and your not alone as it isn't always easy for others as so much is hidden but we still feel ill.

awaynboilyurheid Fri 15-Aug-14 21:15:06

sorry meant to say, for others to sympathise

Saltire Fri 15-Aug-14 21:33:04

A lot of the symptoms you describe sound like mine, but mine is Fibromyalgia, although I am querying that diagnosis.

hashtagwhatever Fri 15-Aug-14 23:01:52

Thank you, feeling a bit down in the dumps knowing im not alone in feeling so rough helps iyswim.

I think I may look into going gluten free it can't make anything worse and hopefully eases some symptoms.

RockinD Sat 16-Aug-14 09:50:19

How much thyroxine are you taking?

hashtagwhatever Sat 16-Aug-14 12:21:40

50mg I'm due to see the gp I was thinking of asking it to be upped?.

Lonecatwithkitten Sat 16-Aug-14 17:43:53

I always think of autoimmune disease as like an iceberg what you can see at anyone time is about a third of what really is going on.
So far I have:
Mixed Connective tissue disease
Pernicious anaemia
Celiac disease

I have features of others, but my rheumatologist has decided to stop diagnosing and concentrate on treating me. My most recent symptoms have suggested Fibro and/or Sjögren's with a special dose of non-specific bursitis for good measure.

All apart from the vitelligo had your symptoms prior to diagnosis.

awaynboilyurheid Sat 16-Aug-14 18:02:03

50mg is a tiny dose , might be why your symptoms still bad? I am on 175 and 20mcgs of T3, also called liothyronine its the Liothyronine that has made a huge difference as I don't absorb thyroxine well but only some endo's will prescribe it you have to find a good one that has kept up with current research to prescribe it. Go on to Thyroid Uk to TPA and you can research it , good luck you really have to push to get help for this condition its very misunderstood .

hashtagwhatever Sat 16-Aug-14 18:31:21

Did you have the tremor/vibration feeling?

I will see about getting the dosage upped.

Hashimoto wouldn't cause inflammation in my joints would it?

RubySparks Sat 16-Aug-14 18:41:37

Hi I have coeliac disease and been gf for nearly 4 years, then diagnosed with hashimoto's about 3 years ago, on 75mg levo having pushed to get an increase from 50mg.

I also had low vit d and took supplements for a while and made an effort to spend more time outside. About 8 months ago I developed pins and needles feelings in my feet mainly but also hands and face, as yet I don't have an explanation for this so watching with interest!

I have had fibromyalgia suggested but as symptoms are so similar to hypothyroidism that just seemed unlikely.... I still suffer fatigue and leg pain if I have overdone things either for work or leisure so feel there is still something I'm missing.

RockinD Sat 16-Aug-14 19:09:41

There is published research that says it's pointless starting thyroxine at anything less than 100mcg, provided the patient is under 50 and does not have any signs of ischaemic heart disease, so on that basis 50mcg is a very low dose and may account for continued symptoms.

If your FT4 and FT3 are not in the top 30% of their respective reference ranges then you have nothing to fear from increasing in 25mcg steps.

hashtagwhatever Sat 16-Aug-14 22:57:58

Thanks rockin.

I have never really felt this is all thyroid related if that makes sense.

weegiemum Sat 16-Aug-14 23:17:10

Lonecat - I was tested for Sjogrens (my grandma has it), it's worth getting that diagnosed as there are therapies. It's a salivary biopsy, which is weird and I've got a tiny forever-numb bit on my lower lip after it.

The treatment I get is IVIg, intravenous immunoglobulins. It's used in a lot of neurological autoimmune illnesses and is fantastic, it literally puts me back on my feet.

Trouble is it's pretty expensive (my treatment costs the nhs about £11,000 a month!) and not easy to get diagnosed. It boosts the immune system and improves all my symptoms.

These Autoimmune things are tricky - running through in my head family up to first cousins, we've got RA, SLE, MS, CIDP, Sjogrens, Parkinson's, Fibro, immune-influenced prem menopause (says the gynae though I've never seen it written about) and Raynauds (forgot to mention I have that too, it's part of the RA). All the doctors get a bit hmm about it, but I reckon that's a lot in a pretty small family. Both my grandmothers had/have severe RA (with associated Sjogrens and Raynauds) but apparently it means nothing as it's not a parent or sibling!

I really hope you get some answers, op, it's not knowing I found hardest!

weegiemum Sat 16-Aug-14 23:18:52

Ruby - pins and needles/numbness in feet/hands/face needs a neurological look! I hope you can get that!

RubySparks Sun 17-Aug-14 09:44:52

Thanks Weegie I did get a referral (think they were concerned about MS) but that was ruled out just by things like reflexes, so no MRI.

Also have lots of autoimmune stuff in our family, type 1 diabetes, thyroid probs, addisons and lots of coeliacs! Forgot I'm also on HRT having had earlyish menopause from about age 43, only one doc mentioned that could be autoimmune as well.

So I suspect either another auto immune thing or that I don't convert T4 to T3 well.... My skin is kind of sallow / yellow too and get kind of jittery on the thyroxine after being on 100mg for a while so dropped to 75mg.

I find I can't be bothered to keep going back to doc so just kind of pace myself to not get overtired. Hoping we all get some answers soon.

Lonecatwithkitten Sun 17-Aug-14 10:23:00

Weegie I have Sjögren's in my family (my mum has it) and mixed connective tissue disease is in the same group of diseases.
It can be diagnosed without salivary biopsy using AntiLo and AntiRo antibodies on blood test I current have antiLo, but not antiRo. Both mine and my mums Rheumatologists prefer Plaquenil to immunoglobulins for a variety of reasons.
I am quite happy with the symptom treating policy currently as I am a vet and completely understand the mechanisms of my illness. I think if you have immune mediated disease you need to become an expert in your disease and the possible treatments so you can make informed decisions.

hashtagwhatever Sun 17-Aug-14 11:35:26

Is anyone on hydroxychloquine?.

Rhuetology asked me to read up on it after my last appointment. I have but bit worried about starting after reading it can affect the eyes, vison loss ect.

Cocolepew Sun 17-Aug-14 11:57:52

Im on it for lupus , I think the odds of it affecting your eyes are small. You need to see a an optician as soon as you start taking it so they can get a base reading from your eyes and then go every 6-12 months for a check up.

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