Lupus & hypothyroidism

[t3rcam]

My dear friend was diagnosed with SLE Lupus in July. She is so unwell. She has lost a huge amount of weight, lost a lot of hair, has large weeping ulcers on her hands the size of 5p's, she also has a diagnosis of Raynauds & sjorgens and is depressed. I think she may be hypothyroid too because of eyebrow loss, constipation, scalloped tongue, feeling cold, dry skin and hair, extreme breathlessness, poor hearing and lots of other symptoms which may be Lupus related but as her risk of being hypo is high I wondered if anyone can add some insight?

[Nanaedake]

Scalloped tongue can be a symptom of low B12. Take a look at the Healthunlocked Pernicious Anemia forum and check out symptoms for low B12 and folate. If the outer third of the eyebrow is missing it can be a sign of hypothyroidism so it would be worth getting thyroid blood tests. TSH, FT4 and FT3 as well as thyroid antibodies TPO. She probably already has TgAb antibodies but you could check blood test results to find out and if not tested then ask for those too.

Critical vitamins to check out are B12, folate, vitamin D and ferritin.

[t3rcam in reply to Nanaedake]

Thanks for your reply Nanaedake, yes she has had all of these tests done & has been told the standard response that the results are 'normal'. I've asked her to get a copy but she is so unwell everything is such a major effort for her.

[Phoenix605 in reply to t3rcam]

She needs to apply to have her electronic records turned on. It includes results and once on will save visits or calls for simple things like repeat prescriptions and test results. I got backdated results too.

[shaws Administrator in reply to t3rcam]

She has to get copies of her blood test results as 'in range' the doctors usually only refer to is not ensuring that everything is 'optimum'.

For instance they will state that a B12 about 200 is fine, except that for us we've been informed that a B12 towards the top of the range - even 1,000 is essential in order that we may avoid dementia.. Vit D plus iron, ferritin and folate have to be tested.

If she's not had recent ones she has to request them and it must be extremely painful to have open sores and with all the other complications.

[shaws Administrator]

p.s. I have deleted a duplicate of this post which you have inadvertently posted twice

[blondpalomino]

Hi,

I have hypothyroidism,my sister has lupus.She has had it for quite a few years now,initially with no bad symptoms, but she is getting more as she gets older.She also is very thin,thinning hair - but no worse than mine! She gets joint pains,but so do I. She has tested negative for hypo.

She has a rheumatologist she sees every so often.For the last few of years she has been getting terrible chilblains on her fingers,they would go black and look infected,and she had to wear gloves to do anything.They would start in the winter, and start clearing up by the end of the summer, but then start all over again. For the last couple of years she has been going in hospital twice a year for an infusion of iloprost,every day for six hours over 5 days.

This has helped her fingers a great deal,if she has this treatment then she doesn't get the chilblains.sounds like it may be worth looking into for your friends hands. Does she have a rheumatologist - if not she needs to request an appointment with one,and ask if this treatment would suit her.

[t3rcam in reply to blondpalomino]

Thanks for your reply. Yes my friend does have a rheumatologist but all he did was prescribe magnesium sulphate paste for the ulcers on her hands, feet & arms. She sleeps a lot and is hardly able to walk so much so that she now has a wheelchair. Depression is keeping her from fighting her own corner but she is resistant to there helping. Heartbreaking really.

[blondpalomino in reply to t3rcam]

Hi,

He doesn't sound very helpful does he? Surely there is something else he can do?

My sister has tried different tablets for the chilblains on her fingers, but these didn't work. The only thing that has worked is this treatment she has twice a year,which really cleared her fingers up. Prior to that she had black fingers that looked terrible,and she had to wear gloves doing anything around the house,in case they got infected.They used to hurt a lot too.She was at the end of her tether until she got this treatment.She was due to go in hospital this week,but it has been cancelled for now as they didn't have a bed for her.I hope that she will be able to get in before Christmas,otherwise it will be coming back again.

There are other treatments like immunotherapy, but I'm not sure if they are just in the trial phase, or if they will be able to afford them anyway.

There is a LupusUK website which may be helpful for your friend,my sister talks to people on it.