Hello, I hope you accept me. I joined this group today.
I have a rare syndrome called Pendred syndrome. It makes you deaf at birth and later on in life you get an enlargement of the thyroid gland with sometimes hypothyroidism.
I presently have a euthyroid multi-nodular goitre and I am not on any treatment for it. Does euthyroid mean it's borderline from being under active? I have been told it's borderline, but I doesn't need any treatment for it. But, over the few years I have noticed few things. One of my feet buzz, I get blue fingers, very heavy periods, indigestion problems, breathlessness and the worst one of all is anxiety. The anxiety happens at night when I am just drifting off to sleep, it suddenly hits me and shocks me awake. Horrible.
Should I get myself on thyroid tablets? Cos I can't put up with it anymore? Would my GP or consultant let me have them?
Thank you
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Lemons_n_oranges
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Hi, welcome to the group. I don't know a huge amount but I'm pretty sure euthyroid is in the middle neither hypo or hyper and I think it is pretty much where 'they' want you to be if that makes sense.
Funnily enough I was Googling last night - I've gone deaf in one ear - wax probably - but I was looking for helpful hints! - and found Pendred syndrome - had never heard of it before.
Your blue fingers couldn't be Reynauds could they - are they cold and waxy as well?
Hopefully someone who knows a lot more will come along and help you.
Yes that's right my GP said my fingers are Reynaud's, don't know about them being waxy lol
Thank you for looking Pendred Syndrome up, it's a huge problem for me cos nobody's heard of it. Even my thyroid consultant and GP both say they never had a patient with Pendreds before.
I am interested if I could try out low dose of thyroid tablets to see if it will make me and the symptoms better?
When I was at my hyper worst (before I was diagnosed) I was SO anxious. I could have got a good medal for worrying. I used a lot of Dr Bach's Rescue Remedy, the pocket spray and even the lozenges to suck while we were driving through France. Considering what was actually wrong with me I would say it worked surprisingly well but it is no substitute for a proper diagnosis and treatment.
Like Browny says find out your results with the lab ranges and post them on here - someone is bound to have some helpful suggestions.
I worked with someone with Raynauds, all she had to do was go from the front of our building out to the back and the temperature change used to cause her fingers to go numb. It didn't have to be particularly cold although winter was terrible for her. Her poor fingers used to look white and waxy. They were very painful too.
Hi Lemons_n_oranges we all accept you! Love your picture actually best to get your results with the ranges and post them on here as already suggested.x
in reply to
If you are experiencing symptoms then supplementation might help but best to try your GP as a first port of call.
OK thanks so much for ALL your advice, I try and get a copy of my results. I have not ever had any actual lab range style results from all my thyroid tests. All I get is sometimes letters saying I am OK, just borderline but not under active or I hear nothing at all and that means I am OK too. I go to my GP first, see if he can get them. Why do the NHS like to keep half of everything like results in the dark?
I also find my Raynaud's get worst if I happen to get emotional too. I know what you mean now by 'waxy', they get white, yes mine does too, now I know what this meant. I also get pin and needles in my both ring fingers and both little fingers too, this happens when I wake in the mornings.
Anxiety is the worst for me. I try and not worry either, but what I had depressed during the day of no worrying, suddenly then hits me at bedtime. It's like a bolt of lightning, perhaps almost like a panic attack, it's really weird.
Welcome to the forum. I am sorry, I personally know nothing about goitre but many of us know about thyroid blood test results and the difficulty of being diagnosed and treated. Firstly you should ask your endo or GP for your most recent thyroid test results, together with reference ranges for each one. This will be TSH and possibly free T4. When you have these, post here again for comments and advice. It certainly sounds as though thyroid medication would help you but it will be difficult to get a prescription if your endo is convinced you do not need it. Has anyone tested your iron, Ferritin, Vit B12, Folate and Vit D? These need to be high in range and are often low in people who are hypothyroid, giving a variety of symptoms such as yours. Ask your GP to test these and post here with ref ranges. I hope you get help soon.
No, nobody's ever tested my iron, Ferritin, Vit B12, Folate and Vit D. I will ask, write all this down and take it with me. Thank so much, I try and have a good chat with my GP. It is hard for me, cos my deafness is like a barrier with the communication.
I noticed my consultant's nurse weigh me before every time I go in to see him. I am not over weight, I am quite thin. I asked him why he did that once, he said if I get fat then I need the tablets? So, I watch my weight like a hawk limit my food.
I am not sure it is that simple, as many on this site would testify and it would be better for your body and health to eat well, simply avoiding junk food but do not limit your food simply to show you do not need the tablets. It would be much better for you to put on a few pounds and then he might take notice of your blood tests and give you some medication (if you need it.)
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we all accept you! Love your picture actually 
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