Hi all still waiting for a diagnosis for my 12yr old daughter endo appt 7th November I am so worried about her she has missed school since 30th Aug due to exhaustion,anxiety,pain under ribs and stomach legs too hot all the time just generally not feeling well at all,she has a large goitre,they told me she has antibodies in her blood and when she had ultrasound said her thyroid was very inflamed,last night up all night with her she couldn't stop shaking and freezing cold hands and feet and her pulse was 148 surely that's way too high I don't know too much about thyroid but I know my daughter is not well at all why does it take so long for docs to treat a child that has these symptoms???,my gp said a few weeks ago they were hoping it may have just been a thyroditis but this has been going on since April ,her granda and nana both had overactive thyroid any advice would be much appreciated xxxx
Pulse 148: Hi all still waiting for a diagnosis... - Thyroid UK
Pulse 148
Personally with a pulse that high I would be either calling emergency doc or going to A&E. I had Graves at that age and was very ill indeed so your daughter has my sympathy.
Thank you I thought about calling Nhs but I took her before and she had been vomiting and was really ill and I did go to gp first he sent me but because she had been suffering from anxiety,which I KNOW is related to her thyroid they said go away and see a therapist and maybe that will help but last night I was ready to call an ambulance I think when her pulse is that high so often it could be damaging to her heart thank you for your reply I don't know so much about thyroid conditions but I know my child is so different from what she was I only hope they can help her thank you againxx
Can I also ask you at that age did you have bad anxiety
Cheers xx
I think I probably did, I know for a while I was labeled as being "difficult" and school was a disaster, I ended up missing most of school from mid teens onwards. I remember the terrible uncontrollable shaking i used to get usually at night and then being utterly exhausted the following day.
I hope your daughter gets some help very soon but I would definitely zip to A&E if her pulse continues to race.
You must be very worried. Do you have your daughter's blood test results? She needs TSH and t4 tested at least, also thyroid antibodies. It is very important she has them done, as she is clearly Ill and needs treatment. If you do take her to a and e you might be able to get them to test her there and then. Otherwise you need to take her to the GP and demand the tests are done.
I have just looked at your previous post and seen they suspect overactive thyroid. Why are they not treating her?
Aah, I see you have an endo appointment coming up.
Hi thanks for your reply since they did blood tests that I did demand as she had such a swollen neck they have given her ultrasound and nurse said her thyroid was very inflamed but I am getting nowhere with my gp firstly she said it was anxiety because her dad died 4 years ago and it was just hitting her now, thankfully after months of pestering her she finally agrees with me we have an appt with an endo on 7th November but it's not fair that she has to suffer in between and I am so worried her pulse is so high every other day,my gp said that she hoped it was just a thyroditis and would pass but been goin on since April and with family history and the way my baby is I doubt that is the case xx
The good news is that once you see the endo she should be given treatment and she will start to feel better. I think the anxiety is a red herring. Thyroid problems lead to feelings of anxiety, and being unwell is an anxious time too. I would think that it is much more likely that her anxiety is caused by her thyroid problem, rather than being the cause of her symptoms.
Thank you I've thought this for months I know my daughter her strengths and all and I am at my wits end and so is she to be fair cos she can't understand why she feels like she does thank you so much for your reply like I said before I don't have any knowledge of thyroud disorders so any info helps me so much thank you again xx
Three weeks wait for an appointment is a long time for a child to feel this unwell. Ask your G.P. if they can get your daughter in sooner to see the endo.
Good luck.
I've been trying and I was told by ent she'd been referred in August I actually got this appt by phoning so much myself or who knows how long it would have taken,she has had lots of blood and an ultrasound which no one has actually read yet as it's been sent to endo and it was done on 1st September I think like I said from beginning gp thought all anxiety related to her dad dying and actually said to her that if she didn't go to school she'd be taken away from me,I mean she is 12 ??and has been through so much,but now she agrees with me but also admitted she has no experience of children with thyroid conditions thank you for your reply really appreciated xx
Oh my goodness, how awful of your G.P to say your daughter would be taken away from you, like you say she has been through so much, poor little lamb. I think if it was me and my daughter and she feels really bad I would take her to A & E and this may get her seen by the endo. sooner.
I do not know that much about over active thyroid but I know that anxiety is a symptom of it so for goodness sake your G.P. should know this also.
Yea I know and she is a straight A student never missed school till this now I'm having work sent home for her you're right should never have been said,I don't know much myself but I was close to taking her to a&e last night I feel like no one taking it seriously last time (in June )I was sent to a&e cos her pulse was almost 160 and she was vomiting different gp gave me a letter but put in it that she can suffer from anxiety and the junior doc did an ecg and said it could be anxiety prodded the goitre in her neck and said'I think that's just her thyroid' to be honest I couldn't wait to get her out of there but since then bloods have shown antibodies Nhs is such a mess at the moment xx
What did he mean "that's just her thyroid" did he not put two and two together. I agree NHS is such a mess. I have had years of problems with my daughter, she is much older than yours and has suffered symptoms of under active thyroid for years, but because her levels are in the so called range they will not treat her. She is now self treating and is feeling better, but you cannot self treat with other active thyroid therefore the sooner she sees an endo. the better.
Hope you get to see one very soon.
They meant the large goitre she has in her neck and no I don't think he could add 2+2 !!I know it was shocking she was ill for about a week after and lost so much weight I think the problem here in Glasgow is since they built the new 'superhospital' they have same amount of staff and 3 times more patients but I will not give up fighting I think we all know our kids and know when something not right thanks for your replies I'll update as soon as I get some answers
Thanks again xx
Cant add to all comments but it is disgusting to be treated in this way . Who are these so called d*ctors. My heart aches for your daughter and you. Xx
This is going to be a mammoth post so apologise in advance! I'm sorry about your poor daughter & you. The mess the NHS is in folks are fobbed off & made to feel their irrational especially when anxiety has been mentioned. I think your in for a long battle based on my son's experience & I have been fighting for my son for 10 years. As a nurse personally I do not think taking her to A&E when her heart is racing will get you anywhere as I fear when they see anxiety in the notes & don't know what to do that's what they will label your girl & expect assumptions to be made about you to be in your daughters notes. You know your daughter best so don't put her health at risk & not go to A&E I am only sharing my thoughts & experience. I don't want to add other diagnosis but your daughters symptoms so like my son & I wouldn't wish his journey on anyone. If she has had a cold bug previous to thyroid bloods or just not quite like herself she may have required antibiotics or not she could have had glandular fever it's not always recognised & kids pretty resiliant so could go unnoticed. Ask for blood test for Epstein Barr & insist as in your blood stream up to 6 months in advance of when your daughter became ill & symptoms sound like myalgic encephalitis plus thyroid as you have strong family history with thyroid I just don't want thyroid to be a red herring. You can request to see your daughters notes & to have copys of these & there is a charge. When going through puberty risk of autoimmune disease is heightened happened with my son aged 11,he was a happy healthy golucky boy, top of his class,involved in lots of different activities & very popular.He had bug at xmas in primary 7 when he started to be so achey & tired,from rarely being off school to too tired to go.School started sending him home as so tired & grey between Xmas & summer hols he was referred to paediatric doc's who reluctantly took some bloods(these are the ones that picked up he had had EpsteinBarr although paeds tried to say he had school phobia as going to secondary school after the summer i know my son & he was so excited along with friends to go to secondary school unfortunately he never managed to attend secondary school as became too ill. I was labelled neurotic mum who's also a nurse in his notes you couldn't make it up, just giving his story for background info in case you find yourself in same position test off this reply will be succinct I promise & as my i.t schools are lagging sending you this novel..bet you didnt think 2'partner
I'm hypothyroid & my mum so very similar story as your daughter. His thyroid antibodies were 8550 normal range 0-60 no other action taken said probably be hypothyroid in the future.To cut a long story short..I know bit late with that😉 subsequently diagnosed VitB12 deficiency so injections evey 3 months, ridiculously low Vit D do on supplements,overwhelming fatigue,Addison disease on steroid, bone marrow r showed he makes a lot of the cells needed to fight infection but his body was not holding on to these so antibody neutrophil positive so very vulnerable to infection, ever increasing pills for pain, hyypersacus super sensitive to noise now wears eat defenders at all times photosensitive epilepsy so can't do lights lives in darkened bedroom & finally diagnosed hypothyroid on 75mcgs thyroxine & this from the child who had carpol approx 6times prior to this & this took 10years of constant fighting to get this far..there more but my thyroid playing up 6weeks ago TSH 180 now TSH 77 so feel bit rubbish on 225 mcgs of thyroxin so getting there &mentioning this as not anti thyroid thyroid been hypothyroid for 24years. Please forgive me if you feel I'm making assumptions about your daughter & her journey that is absolutely not my intention I just wish someone had given me a heads up at the start of my son's illness. He now spends his days in darkened room 24/7,bedbound & all due to autoimmune disease that was missed diagnosis for many years. My son absolutely not a reflection of your daughter but there are similarities you may wish to check out or to absolutely dismiss if not relative to your daughter.My son is now receiving palliative care as terminally ill aged 20 huge travesty of justice so share his story so others don't have to endure this. Promise I will not give mammoth reply AGAIN😊
I'm so sorry for your son I don't yet understand anything about thyroid and I don't think you're making assumptions but I do thank you for all your comments ive been trying to read stuff but still a bit confused thank you so much for your reply I suppose it'll take me some time to understand it all although your story worries me so much I know my daughter is ill but I've got to wait for these appointments , she felt so ill about an hour ago So I took her pulse and it was 150
What do I do ?? I've decided I'll wait a while take it again and if it's still same ill call Nhs 24 this has been going on since April so not easy for me or her .ENT last week said it's good cos now she'll see endocrinologist and she hasn't waited too long ??? Haha what is too long when your baby's sick 😀Thanks again and much love to your son xxx
Mb2003 so good to hear from you & hope it was ok to share my sons journey. There were definitely some similarities so just wanted to give you heads up as you'll fight for your daughter always. I've just got your message so you may have called NHS24 for advice by now. This is totally my thoughts & opinion you have your daughter in front of you & any concerns especially with tachycardia (fast heart rate) you will know if she needs seen urgently & what going to A&E will achieve for your daughter's benefit. My concern is you'll go to A&E wait for 4hours to be seen by which time pulse may be back to normal range & as been ongoing since April I worry you will be dismissed & return home absolutely exhausted but totally my thoughts & whatever you decide to do will be the right decision. NHS have no concept of how waiting to be seen by the right health professionals is torturous especially when it's your child. I started an appeal for my son at one of the gofundme pages so he could be seen privately. These appointments, investigations & suggested treatments made all the difference. Consultation was about £150 & you are absolutely believed from the start you don't have to continually explain your childs journey over & over again. One of the best things is once private doc's get involved & diagnose all further treatment can be passed back to NHS which is great. The doctors you see privately can be the same doc's you would see eventually in NHS. It may be an option for your daughter. I went public got my son's story in local & national papers,on the radio & part of college students media projects, local MP on board,from fun days, raffles, evening discos etc any & all avenues I could think off & miraculously head of NHS for our area got in touch when newspaper & MP became involved...I genuinely wish you & your daughter all the luck in the world & appreciate you sending love to my amazing boy..& please don't hesitate to get in touch with any quests xxx
Thank you for your reply I'm so glad for you and your son great that you've done so much to help with his treatment, her pulse is coming down as we speak I haven't. Called Nhs 24 as I think you get to the point were you wonder what is really for the best and like you said what will they actually do ?? Send me home after sitting waiting for hours ?yip sad but true I've been there thank you so for your advice I will keep updating and asking for advice as I go along this very difficult road
Xx
Mb2003 another mammoth response from me & I promised I wouldn't send you another saga...oops! Be good to hear what's happened with your daughterl tonight & I really hope your not sitting in A&E on a Friday night at this moment..😕x
Nope Haha cheers for asking that is always last resort for me her pulse came down to 125 and she still felt ill but not as bad as she did earlier ill see how she is in morning and take it from there again thank you it's much appreciated xx
General guide if pulse racing for any reason & it's 200 or over I would go to A&E, in my opinion (& it is just an opinion) that's when your daughter would require intervention to slow her heart down..it is the NHS & treatment options are driven by numbers..not how Ill someone is if it doesn't fall within certain blood parameters you can be banging your head against a brick wall...Too late for upcoming endocrine appt as that's a week away but for future say you'll take any cancellation going, it's good to call your medics Secretary after you see endocrinologist & ask to be contacted if any cancellation as your so worried about symptoms she's having & explain your daughters only 12 & missing school & your desperate & be so friendly & chatty to the seccy the one who can bump your daughter up the list. if you know someone who works at the hospital ask them to go see seccy & plead your case. Re racing heart.. at endo I would ask for 24 hour e c.g recording machine to capture exactly what's happening with heart rate, it's a very light machine & unobtrusive no one would know it's there unless you told them & your daughter does not need admitted which huge bonus..just couple things to think about..good luck 😊x
Thank you I will ask about heart monitor I just hope they do something to help her xx
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