Russell silver syndrome misunderstood by gp Watch

Anonymous #1
#41
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#41
(Original post by Reality Check)
What did you want to achieve, here? There's an awful lot of ranting on this thread (which is your prerogative), but I don't understand what you're after from the TSR community. You don't seem to want advice, help, guidance...
I just gave an update on the situation. I didn’t want to achieve anything, and I am trying to prove to anyone reading this that this isn’t a mental thing, at least not entirely. Something was actually physically wrong and I lacked something.
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Reality Check
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#42
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#42
(Original post by Anonymous)
I just gave an update on the situation. I didn’t want to achieve anything, and I am trying to prove to anyone reading this that this isn’t a mental thing, at least not entirely. Something was actually physically wrong and I lacked something.
OK - thanks for that. I can sense the frustration, but you know all this energy and sense of injustice is misdirected here? If it's been cathartic, then that's good - no harm done by making a thread like this. But was this the right place?
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black tea
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#43
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(Original post by Anonymous)
I got told by a different gp that called me today saying I am low in vitamin D, while the other gp that I saw told me I have an eating problem (when they don’t even know me) and everything including vitamin D is fine and I am mental 😂😂 everything is all in my head 😂😂. Maybe I had hypoglycaemic episodes because I am low in sugar and vitamin D and being low in vitamin D made me cold and more tired than usual. I don’t know what to believe anymore. My gp in general is crap I think, the other gp wrote down on the system that I have an eating problem and they will get back to me about AMHS apparently but the gp that called me today didn’t say anything else about that. I got given supplements for vitamin D and I have to take it for 3 months so I am assuming it was very low. This is evidence that something was wrong this whole time.
If you only just got the phone call today, your vitamin D level results have only just come back, and the fact that you were told to take it for 3 months isn't an indication that they were super low - that's just the standard course. Low vitamin D levels (which are low for most people at the time of year...) also don't mean that your issues are purely physical...
Last edited by black tea; 1 week ago
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Anonymous #1
#44
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#44
(Original post by black tea)
If you only just got the phone call today, your vitamin D level results have only just come back, and the fact that you were told to take it for 3 months isn't an indication that they were super low - that's just the standard course. Low vitamin D levels (which are low for most people at the time of year...) also don't mean that your issues are purely physical...
My vitamin D levels were low in January last year too, which is when I didn’t black out often and my urine was infected. That time the gp didn’t give me anything for my abdominal pain and kept saying it’s nothing and asked if it was period pain and eventually the walk in centre that I went to gave me antibiotics for that and the pain went. I’m just worrying if this GP read last years data and not this.

Do you blame me for not eating when food takes time to go down my throat/feel like food gets stuck in the throat/poking feeling that never went away in the throat since July 2019 and feeling like I can’t breathe? If you had these issues with the throat you wouldn’t eat, no one would, and if I told the gp this they would dismiss it just because I was under camhs for headaches which doesn’t make sense.
Last edited by Gothic Kitten; 1 week ago
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Anonymous #1
#45
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#45
If I did go under a mental health team I would just talk mental then, that’s the whole reason why I am under a mental health team anyway, because I’m not right in the head. When I was under camhs and right before I got discharged I told my therapist that I bang my head to relieve my headaches, because it literally does for a few seconds, but I started talking crazy because that’s the reason I am there.
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Anonymous #1
#46
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#46
Also I don’t think I mentioned that I feel better now and don’t feel weak, I don’t feel like I will black out anymore. Yesterday I started my period and started feeling weak and having sugary stuff again though, but it’s not as bad as it was before, so I basically ate and fixed my body and it doesn’t burn inside, so since I am feeling better there is no point going to the gp/doctors and going under a mental health team and get help for eating.
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Sammylou40
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#47
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#47
I think you should speak to the mental health team anyway.
There’s no shame in it. But you have to be totally honest with them for them to help you. It’s no good making things up or saying what you think they want to hear.
If you’re not happy with your gp then you should change. And likewise, if you’re concerned about what’s in your notes, write to the surgery and ask to see them
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Anonymous #1
#48
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#48
(Original post by Sammylou40)
I think you should speak to the mental health team anyway.
There’s no shame in it. But you have to be totally honest with them for them to help you. It’s no good making things up or saying what you think they want to hear.
If you’re not happy with your gp then you should change. And likewise, if you’re concerned about what’s in your notes, write to the surgery and ask to see them
I think all gps are like that, they dismiss anything physical for mental if you were under mental health teams previously, doesn’t matter which gp you go to but thanks for the advice.
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Sammylou40
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#49
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#49
(Original post by Anonymous)
I think all gps are like that, they dismiss anything physical for mental if you were under mental health teams previously, doesn’t matter which gp you go to but thanks for the advice.
The way I see it, it won’t hurt to try.
Have you considered seeing a private doctor for a diagnosis? Get a straight answer. Is that something your family could do?
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black tea
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#50
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(Original post by Anonymous)
Also I don’t think I mentioned that I feel better now and don’t feel weak, I don’t feel like I will black out anymore. Yesterday I started my period and started feeling weak and having sugary stuff again though, but it’s not as bad as it was before, so I basically ate and fixed my body and it doesn’t burn inside, so since I am feeling better there is no point going to the gp/doctors and going under a mental health team and get help for eating.
Funny that, how eating fixes hypoglycaemia and makes you feel less weak...
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squeakysquirrel
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#51
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(Original post by Anonymous)
I need a place to rant. So I felt like I was going to have a hypoglycaemic episode and felt weak for a week after my last period as it lasted longer than usual. I went to give bloods because I knew something wasn’t right, because I was having severe heart palpitations and my head was thumping, my blood sugar was as low as 3.6 one day when I woke up from sleep and I had to quickly eat sweets and fizzy drinks to get it up to at least 4. I felt fine on the day of the blood tests and they took 4 bottles but tested me for 7 things from thyroid, to bone profile, to red blood cell count, to vitamin D (was low last year), to HBa1C and more. All of them came back normal but for some reason the day before my blood test they called me up and gave me an urgent appointment for the next day and was talking to me like I was dying. So it came back normal and my doctor sees that I was under camhs and have been diagnosed self harm and emotional dysregulation, my camhs therapist also diagnosed me with Russell silver syndrome but didn’t write it on the report and kept writing about me eating, this was back in January 2019 when I was discharged, I also had headaches then but nothing as severe as what I went through recently. My camhs therapist made it sound like I am not eating, but I am eating when I want to and I help myself throughout the day even if it’s not at the right times, my body doesn’t get hungry at the right times so anyway, using old data my doctor wanted me to go under an adult mental health service in north London (when I live in south London) to help me with my eating but I don’t need help, I can gain weight easily. He checked my height and weight, height stayed at 4 ft 7 (normal for a girl with RSS) and weight went down a little to 29kg. I told him I can gain on my own, I monitor my weight daily and I see that I go up to 35kg which is normal for me but he says 42kg is normal for me and I am dangerously underweight and bmi is low. He said it’s my choice and I am old enough to make my own decisions but to think about it. He doesn’t seem to understand that people with RSS cannot eat regular meals like normal people, and he told me no one is normal everyone is weird in Their own way and people in Bengali communities tend to be small but I am still not normal and he’s worried about me. Also RSS is a growth disorder which causes poor weight and height before and after birth. He is accusing me of not caring and he is also accusing my mum saying we don’t care when we ran around with symptoms of RSS for the first 10 years of my life, from the age of 8 and 9 I had to monitor my height and weight but was slowly gaining and was off the charts. Has anyone ever felt misunderstood by the gp like this? Has anyone ever felt like they just used their mental health against them because they couldn’t find anything wrong with them?
You are the girl who posted a few weeks ago insisting on fasting for Ramadan despite having a genetic disorder that excludes you. You need to see a paediatrician
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Anonymous #1
#52
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(Original post by black tea)
Funny that, how eating fixes hypoglycaemia and makes you feel less weak...
Ha ha funny, and eating chocolate and fizzy drink foxes Hypoglycemia, eating meals or drinking water doesn’t help me, but yes I am eating meals now even if it’s 2 meals and it’s difficult, and I don’t ever snack In between because it’s too much food for me, I only would if I needed sugary stuff (so if my sugar level drops) unless it’s Ramadan, but yeah even though I am eating people would STILL complain because that’s all everyone seems to do. It’s like with my other sister, my older one would indirectly say to her face that she needs to lose weight because she’s the chubby one, while she would say to me you need to gain weight and it’s so ****ing annoying. There’s no pleasing people.

You try eating with a sore throat and see how you feel. Recently I almost got a fever from the cold but I wrapped myself up in woolly clothes and a blanket and had paracetamol, didn’t get the fever just runny nose, but if I did get a fever I wouldn’t eat at all (not even one meal) because I lose my tastebuds and no one likes eating during a fever,
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Anonymous #1
#53
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#53
(Original post by Sammylou40)
The way I see it, it won’t hurt to try.
Have you considered seeing a private doctor for a diagnosis? Get a straight answer. Is that something your family could do?
We aren’t rich like that but if it came to physical health yes we would somehow have the money.
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Anonymous #1
#54
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#54
I also forgot to add that I haven’t been diagnosed with hypoglycaemia, GP doesn’t seem to believe me and instead blames my mental health for everything, but my parents know that my blood sugar levels go low sometimes and I suffer from blackouts once a month or once every two months and then my sugar levels would drop and I would need to eat chocolate to make myself feel better, so I can’t exactly tell the DWP that I have really been suffering from low blood sugar levels every day recently because I haven’t been diagnosed with it and would be very hard to prove it to them unless I go to the GP with my low blood sugar and faint in the process.
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Anonymous #1
#55
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(Original post by squeakysquirrel)
You are the girl who posted a few weeks ago insisting on fasting for Ramadan despite having a genetic disorder that excludes you. You need to see a paediatrician
I have from birth up to the age of 7 and I was discharged. We can’t afford to just run around with me, other people in my family have health issues too, my gran is 84 and on the verge of death. We ran around to various hospitals until I was 10.
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Etomidate
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#56
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#56
(Original post by Anonymous)
I also forgot to add that I haven’t been diagnosed with hypoglycaemia, GP doesn’t seem to believe me and instead blames my mental health for everything, but my parents know that my blood sugar levels go low sometimes and I suffer from blackouts once a month or once every two months and then my sugar levels would drop and I would need to eat chocolate to make myself feel better, so I can’t exactly tell the DWP that I have really been suffering from low blood sugar levels every day recently because I haven’t been diagnosed with it and would be very hard to prove it to them unless I go to the GP with my low blood sugar and faint in the process.
So you haven’t really been diagnosed with hypoglycaemia or RSS?

What is the point of this thread?
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Anonymous #1
#57
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#57
(Original post by Etomidate)
So you haven’t really been diagnosed with hypoglycaemia or RSS?

What is the point of this thread?
My camhs therapist told me I have RSS because she got in touch with paediatricians outside somehow but she still didn’t write it on my report when she reported back what we discussed to my gp. I know I have it though because the symptoms fit exactly and explains why I went through so much when I was younger, all the symptoms fit.

I haven’t been diagnosed with hypoglycaemia but hypoglycaemia is a symptom of RSS, especially fasting hypoglycaemia because of our large head compared to body ratio, and because we have feeding difficulties and need to be fed through feeding tubes sometimes.
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Sammylou40
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#58
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(Original post by Anonymous)
My camhs therapist told me I have RSS because she got in touch with paediatricians outside somehow but she still didn’t write it on my report when she reported back what we discussed to my gp. I know I have it though because the symptoms fit exactly and explains why I went through so much when I was younger, all the symptoms fit.

I haven’t been diagnosed with hypoglycaemia but hypoglycaemia is a symptom of RSS, especially fasting hypoglycaemia because of our large head compared to body ratio, and because we have feeding difficulties and need to be fed through feeding tubes sometimes.
For your own sake it’s important that you get a definitive diagnosis, whatever is going on.
Speak to your family about a private consultation.
It’s generally around £2-300
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Etomidate
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#59
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(Original post by Anonymous)
My camhs therapist told me I have RSS because she got in touch with paediatricians outside somehow but she still didn’t write it on my report when she reported back what we discussed to my gp. I know I have it though because the symptoms fit exactly and explains why I went through so much when I was younger, all the symptoms fit.

I haven’t been diagnosed with hypoglycaemia but hypoglycaemia is a symptom of RSS, especially fasting hypoglycaemia because of our large head compared to body ratio, and because we have feeding difficulties and need to be fed through feeding tubes sometimes.
Yes, you’ve said.

But you’ve never been seen in person by a paediatrician or geneticist who has formally diagnosed you with RSS, nor have you had a proven episode of hypoglycaemia.

It honestly sounds like you’re using these diagnoses to mask other underlying issues.

All in all, there is no actual purpose to this thread, so I’m unfollowing.
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Anonymous #1
#60
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#60
(Original post by Etomidate)
Yes, you’ve said.

But you’ve never been seen in person by a paediatrician or geneticist who has formally diagnosed you with RSS, nor have you had a proven episode of hypoglycaemia.

It honestly sounds like you’re using these diagnoses to mask other underlying issues.

All in all, there is no actual purpose to this thread, so I’m unfollowing.
Well you haven’t met me in person, I really don’t look normal for my age, I look like a 12 year old, not an 18 year old so not everything is mental.

And I have been under paediatricians from birth up to the age of 7. That’s it.

And if it’s not hypoglycaemia then what is it? Sugary stuff like lucozade or chocolate makes me feel better after feeling weak and numb and when it flashes dark in front of my eyes, heart is racing and ringing in my ears.

It’s fine you can unfollow.
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