Sticky Blood-Hughes Syndrome Support
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Don't know what is wrong but feeling the heat worse than hot flushes!

I have just read nursewendy's post about experiencing the hot flushes and wondering if she has Hughes Syndrome.  I am wondering too as for the past month I have been experiencing dizziness, tingling sensations in my hands and arms, balance problems in conjunction with my dizziness, headaches and yesterday a friend who is a nurse said my memory loss was catastrophic when I didn't have any memory of having an MRI scan.

My other health issues also include a meningioma (benign brain tumour) and hypothyroidism and guess what the symptoms are all intermingled.  All I know is I am just fed up with living like this every day.

If any of you can help me out with this I would be extremely grateful.

Many thanks and I wish you all good health.

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Hi Hun , you need to get your GP to do a blood test , you have to have 3 in total a few months apart and have 3 positive results for APS . You must insist with your Dr as they know little about it , I know more than my own GP !!! Says a lot . Early diagnosis is the key , it's horrid at first but when they give you meds things do improve , try 75mg aspirin yourself xx

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Thank you Amy, I am going to make yet another appointment on Monday and put out all the symptoms I have, I am currently awaiting appointments with an Endocrinologist for the hypothyroidism and a neurologist for possible partial temporal lobe epilepsy I just find that each "expert" blames my symptoms on the other problems!

Will certainly go forwards with the blood test idea, so thank you again.

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Hi, could be APS, but get your doctor to check your Vit d & B12, I have B12 deficiency as well as APS, I had the same problems with memory etc., until diagnosed with B12 deficiency, memory improved once on supplements. Dizzy spells improved with increase of anticoagulants. From what I understand, thyroid, APS, Vit D deficiency & B12 deficiency symptoms can be commonly linked.

Go nag your doctor - it will be worth it xx

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Hi Holly and thanks for your reply.  I definitely do have a Vitamin D deficiency and I would imagine a Vit B12 deficiency as it goes hand in hand with the hypothyroidism but the doctors say I am well in range for that, oh how I wish they would take notes of all the people they dismiss as healthy because their blood results are within the levels!  I have been taking both of these recently, my medicine cupboard is full of supplements that really don't seem to be helping at all.

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Hi, here are the symptoms: hughes-syndrome.org/about-h...   also here are related conditions: hughes-syndrome.org/about-h...

and here are the blood tests, you can get your GP to request these is your history and symptoms fit, do the tests at the hospital as samples taken are time sensitive   hughes-syndrome.org/about-h...

MaryF

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Hi Mary and thank you.  I have just been on the Hughes Syndrome page which is where I realised that it could be yet another health problem I am going through.  Thanks for the advice about blood tests and timing.  No doubt I will be back for advice when the time comes as I will have forgotten all the information given to me!  C'est la vie!

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often a family will be full of Thyroid and autoimmune problems or relatives with multiple miscarriages or still birth plus early heart attacks of strokes!   MaryF

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Thanks to all of you for responding, one more question I have about the heavy sweating is does feeling freezing at other times go hand in hand with it or would that be something else?

Wishing you all good health.

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PS Just wanted to say I am very grateful for this site and everyone being available to answer all the questions that the health service don't know!

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I do have Hughe's. Diagnosed this year in January after a stroke. 

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