LUPUS UK
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Hydroxychloroquine and hypoglycaemia

Most people here are thoroughly bored of my tale of chronic exhaustion and episodes of sweating, flushing and nausea. I've had referrals to cardiology and neurology, as well as my usual rheumy and respirologist. None can explain these symptoms.

Meanwhile, I have continued to be convinced that the explanation lies in the meds that I have been taking. They have controlled my primary AI problems very well, but these newer symptoms have persisted. My rheumy thinks it is Fibromyalgia and prescribed gabapentin to improve sleep quality.

Last night, I was having a particularly brutal time, with recurrent episodes, when it occurred to me that my symptoms were very akin to those of hypoglycaemia. Consulting with Dr Google this morning, I see that changes in insulin sensitivity and blood sugar levels is a known, and studied, side effect of hydroxy.

I am on the waiting list for endocrinology, but I wondered if this is something anyone else has experience with? x

UPDATE: I have now done a couple of weeks taking my blood glucose levels every 1-2 hours. Results: my fasting levels (eg on waking) seem to be normal, but they are slightly elevated after eating (typically around 8-9 mmol/litre). This seems to correspond to a "prediabetic" level (impaired glucose tolerance). So it's not hypoglycaemia!

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I was told I had reactive hypoglycaemia before I even started Hydroxychloroquine so mine's not related to the meds. I manage it by eating protein at lunch & dinner, eating carbs in the day is v bad for me, I'd literally crash out 2hrs after. Have you had your thyroid checked?

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Thanks, yes I was reading one paper this morning that pointed out that the effect of hydroxy may be particularly important in "prediabetic" people. Interesting to me, as a GP I saw as a one-off several months ago pointed out that my blood sugar levels were a little higher than she would like. I did have FSH, T3 and T4 levels done as a one off around then - all normal. It's such a complicated business, isn't it? Have you managed to keep on an even keel since? x

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You've probably heard this before but it's always best to obtain the actual blood test numbers (result & ranges), don't just accept 'normal'. Managing what I eat is really the key, if it's gone passed 3hrs & I've not eaten I'll know about it! I've cut out gluten & dairy too for other problems, I've come a long way, I don't look like I'm turning drunk & crashing out anymore 2hrs after food, it's like I've got a carb intolerance but guess it's related to fatigue/blood sugar. Dinner is always a balanced one & includes some carbs but even then I make sure I eat the protein first, def helps me x

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Thanks, it must be a relief to feel like you have some understanding and control of the situation x

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I haven't noticed it for me Mike, but it could well be for you and others. Hope something gets sorted x

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Thanks lupiknits,

I've been going on about how I think my primary issue is related to endocrine disturbance for a year now. My GP and rheumy have instead organised a neurology assessment, multiple cardiology investigations, physiotherapy, occupational therapy and hydrotherapy interventions, and new prescriptions for amitriptyline, gabapentin, B blockers, several anti-emetics, zopiclone (which really is good for sleeping, btw!)...

The result - "nothing abnormal detected". And yet today I have been confined to the house, unable to climb the stairs without breaking out in a cold sweat and nausea.

I like to think that I'm quite good at talking with doctors. Clearly, I am deluding myself! x

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May there not be a teensy tiny possibility that doctors are not good at listening?

So glad you got the zolpidem. It's a brill ( except for nasty taste after) x

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yes, I've had a few good nights' sleep with the zopiclone - hurray. It's helped me clarify that poor sleep is probably not the cause of my main symptoms now. I've just made an appointment with a different GP from my usual - the only problem being that I have to wait 3 weeks to see him (I could have seen my usual in 2 days!) x

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Perhaps sometimes the longest waits are for the most popular?

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That's it. I saw him once as an "urgent" and liked him. So hoping for good things x

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Very often, and if your practice is a training one, the GP Registrar is the best. They have more time, listen well, are very curious, so often they think outside the box.. At my last practice, I checked out new registrars and then got every possible appt with them. Some people didn't like a " novice" to see them

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Hi Whisperit, this may seem totally unrelated, but have you been tested for Coeliac disease? Before I was diagnosed (first with Coeliac then with SLE), the only gut-related symptom I had was nausea, and occasional heartburn. The nausea was pretty bad, there were times where I could barely eat for days or weeks. I was also feeling generally unwell and tired, but that also may have been the lupus at its early stages.

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Thanks Bebe76, It's never occurred to me or anyone, I don't think. It's an interesting thought...x

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Sorry to hear you are feeling so unwell. What a saga. You're slowly ticking off all the departments at your local hospital. But still no answers. How frustrating. I can't offer any advice but I wanted to sympathise. I hope your endocrinology appt isn't much more of a wait and you feel better soon. Wendy x

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Thanks Wendy, Unfortunately, I'm unlikely to be seen before the end of February, but I've asked to be contacted if they get any cancellations. Hope you are weathering the storms OK - both outside and inside the house! x

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February??? Goodness me! When were you referred? That's longer than rheumatology. Yes, coping OK thanks, we survived the storm. Great pictures and videos of the coast around here though. Waves coming over the high point on the cliff near us that is about 50 metres high??? Never seen it like that before. Boats upside down in the harbour. Amazing no one got hurt. Unlike in Ireland. x

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I read your post with interest whisperit. Recently I have been getting very lightheaded and unsteadiness. I have also had episodes of burning up and sweating profusely. My hands and feet however stay freezing cold, due to the Raynaud’s. My ⭐️ GP is aware of my symptoms, along with chest pain and periods where my heart races, but thinks they are connected to the connective tissue disease. I have an appointment to go back to respiratory medicine.

I wasn’t aware that Hydroxychloroquine could cause symptoms associated with hypoglycaemia. Thinking now these symptoms are very like that. I have an appointment with my ⭐️ GP tomorrow so will ask him about this being a possibility. Xx

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From what I can see, the evidence is a bit thin, but there is definitely some. For example -

Hypoglycaemia is listed as a possible side effect on drugs.com.

A letter in the "Rheumatology" journal reports a case of hydroxy-induced hypoglycaemia in a patient with RA academic.oup.com/rheumatolo...

Another study concludes that "hydroxychloroquine can effectively lower glucose levels through increase insulin level. Clinicians should be warranted [sic] about hypoglycemia during hydroxychloroquine usage..."

ncbi.nlm.nih.gov/pmc/articl...

It'll be interesting to see what your GP knows about this - please do report back x

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I will do. Gearing myself up for a finger prick blood test now to check my blood glucose levels 😩 xx

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My GP didn’t know of the connection between Hydroxychloroquine and hypoglycaemia. He is going to look into it though. In the meantime he has ordered a glucose blood test which will be done on Tuesday. What is concerning him though is my blood pressure is extremely low. Went over my medication and none of them would cause low blood pressure. Made an appointment for me to go back in two weeks to discuss the results of the blood test and check the blood pressure again. Xx

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Thanks, gloomy! I imagine that these are more of those areas of knowledge that you only look into when you are a highly specialist consultant - or when you are the poor blighter suffering with it every day! Hope your low BP gets sorted out pronto. x

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I do believe my GP will look into this as he is the sort of doctor who will do everything he can to help his patients. If he can’t come up with any answers then he will refer it to my rheumy. Have an appointment with him on 20th November. Xx

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Hello, I’ve also read your post and responses with interest.

I’ve definitely found hydroxychloroquine causes hypoglycaemia. Though have t read that anyone else has, so good to find this post.

I have periods where my heart rate is 140+ I’m dizzy and sweating and generally feel terrible. First of all GP put it down to anxiety, then rheumatologist sent me to cardiology, then tested for thyroid tumour.

This was on top of all the Lupus symptoms.

I decided to consult a dietician privately as I’d noticed it was worse if I ate really heavy meals or really sugary things. She immediately said it was down to low blood sugar.

Started on a high protein, high fat diet. Told me to eat fat and protein at every meal and between so I ate every 2-3 hrs during the day and last thing at night. This has helped loads, especially the late night eating. I eat yogurt and walnuts before bed and no longer wake up drenched in sweat heart racing. Dietician said this was my body warning me my blood sugar was dangerously low. Still feel terrible if I eat very sugary things, but can counter it by eating cheese or nuts.

I have many relatives with diabetes and the high fat works for me because I find it hard to gain weight. I’ve always been slim and always low blood sugar but definitely exacerbated by hydroxychloroquine.

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Thanks for that interesting information, Beau2016, and the diet tips. I've now got a blood glucose monitor and will be charting my results for a few days. I'm especially interested to see how it varies through the night.

Thanks again x

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Good luck, definitely give the bedtime eating a go...for me this such a great excuse for late night snacking 😀😀😀 x

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