[WorriedMum]

in reply to: My 11 year old daughter just diagnosed! #1068640

Thank you Ski, sorry I haven’t replied before. Yes, I think you’re right, we need to do some more talking. We have been trying to deal with the here and now in the last few days rather than thinking about the long term as Emily has started having hyperventilation attacks again and seems to be having quite severe chest pain, despite the fact that we increased her beta blockers back to the original levels that worked previously. When we have got over this hurdle, we need to think about the whole picture. Could you just tell me what ATDs are?
Many thanks again,
Dawn

[WorriedMum]

in reply to: My 11 year old daughter just diagnosed! #1068638

Thanks Ski, that does help. I also appreciate what you say about being completely up front with our children and I quite agree, although one of the doctors has talked to me in private about the necessity for certain tests because of the risks of cancer and to be quite honest, I am actually hestitant to bring this up with my daughter. In general, the doctors are fantastic about explaining everything to Emily in ways that she can understand (probably better than I can understand, since it’s all in Spanish!) But it is very hard on her because although she can understand what is going on, at 13 years, she really wants to be fitting in with her friends and she doesn’t appreciate being made to feel different in any way. She finds her attacks especially embarrassing, particularly when they occur at school. At this point in time, I think Emily would probably agree to any treatment that would stop her feeling ill, although I don’t think she has really appreciated the full implications of an operation. I must say that the scarring worries me, although I realise that that is superficial in relation to other considerations.
Thanks once again,
Dawn

[WorriedMum]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070646

Wow, that is amazing support from the school. I wish Emily’s friends had been so supportive. Although I must say that I am impressed with the level of support that we have received from the school’s resident ed pysch, she has been terribly understanding even though she doesn’t really know what she is dealing with. I think that the leaflet that Nancy sent me about students and Graves will be useful to her, so I must get it translated before the beginning of term.

[WorriedMum]

in reply to: My 11 year old daughter just diagnosed! #1068634

Hi Angela
I am very sorry to hear about your daughter’s suffering and I wish you all the best in her treatment, I empathise completely.
I don’t know what ablation is, could someone explain to me?
Thanks,
Dawn

[WorriedMum]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070644

Thanks for your replies, I have to say Val, that I still can’t get over the level of care that you are receiving, I was impressed with the amount of testing etc that emily had received but weekly visits, whilst inconvenient, is very reassuring.

I’m not sure what fine needle aspiration is Lu Anne, but one of the tests that Em has had involved a very long, thin needle being jabbed rather firmly into her throat, maybe this is it? I wouldn’t really describe Em’s attacks as seizures, they are more often characterised by hyperventilation and a lack of consciousness rather than the fitting that you would generally associate with epilepsy etc. Having heard from Val, whose daughter also experiences panic attacks/ palpitations, it seems reasonable to assume that perhaps young people do experience these types of symptoms when they are hyperthyroid?

[WorriedMum]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070641

Hi Carla and Val

That’s very interesting about the heart beat monitoring, Emily was monitored once in hospital when she was kept in over night. She was monitored over night but we were only told that her heart beat was too high, not what the measurements were. Do you have a machine at home?

We have put her back on to 3 tablets of Beta Blockers again until we can get to see the doctors at hospital. We tried to discuss our worries about continued use of beta blockers with the doctors last thursday but they explained that they were the theatre team and therefore could only tell us about operation procedures not other treatment. Apparently, we have to get the local pediatrician (in Spain, children see a children’s doctor rather than the family doctor) to order another appointment at hospital with the pedtrician or ear/nose/throat team as her next appontment with them isn’t until October. The local pediatrician is on holiday until September but we have an apponitment on 3rd.

The theatre team told us that Emily will have to have her thyroid removed and the sooner the better, but they have to wait for a directive from the pediatrician team. Apparently this will happen when the pediatrician team realise that they can’t control Emily’s condition with medication. The theatre team think that this will happen sooner or later, since the anti-bodies will continue to attack the thyroid until there is no longer a thyroid present.

It’s really interesting to hear that your daughter has experienced the panic attacks/ palpitations as well, perhaps young people find it harder to cope with the condition?

Please do keep in touch, and my very best wishes for your daughter.

[WorriedMum]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070639

Thanks for your comments, it is pretty scary stuff. We had to go and pick her up off the street today when she took the dog for a walk and only the dog came back. We found her with a crowd of people all insisting that we call an ambulance. She’d felt dizzy, fallen down and hit her head and gone into hyperventilation. She slept all afternoon and feels much better now. We have an appointment at the hospital on Thursday, so we can talk about our concerns about the continued use of beta blockers and what else we can do about the hyperventilation attacks. I wonder if there are any tests you can do to find out what the hyperventilation attacks are related to and whether they are just her brain objecting to what is happening in her body?

[WorriedMum]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070636

That’s what we’ve just been told by a friend of a friend who happens to be an ear, nose and throat specialist. We have to remove the thyroid and nodule completely and thus get rid of both diseases. The doctors at the hospital seem reluctant as say it is dangerous to operate when the thyroid is hyper? The friend disagrees? He says that growths on thyroids have a high tendency to cancer and should be removed asap?

Our worry right now is that she had been having hyperventilation attacks. These stopped after 4 weeks of taking beta blockers. 6 weeks ago, the doctor told me to stop giving her the beta blockers after a month. A month later, 2 weeks ago, I reduced her dose to 2 tablets a day instead of 3 and now she is having attacks again. I don’t think it is good for her to be on beta blockers but the attacks are not good either so this is a quandry. The friend says that he thinks that the hyperventilation attacks may be linked to something as yet undiagnosed, and not linked to the thyroid condition? are hyperventilation attacks generally associated with thyroid conditions?

Thanks.

[WorriedMum]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070634

Thanks Nancy. No we live in Spain. Fortunately, since Emily has been taking the beta blockers, her attacks have decreased , in fact we haven’t had an attack for 12 days now. Her nodule has been tested and it is not cancerous. So it seems that now we have to wait and allow the tirodril to do its work and when the over activity has decreased they would like to either operate or use radio-iodine, which I have to say, doesn’t make any sense to me. If she has Hashimoto and her thyroid has therefore already been damaged and is likely to return to under-production, why would you want to reduce its productivity further just becasue she has just been through a temporary period of over-production. Still I’m sure things will become clearer in the fullness of time?

[WorriedMum]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070632

Thanks for your answer Nancy. We have just spent the last few days in hospital. Emily’s attacks were getting worse and quite worrying, for example she felt dizzy while running down the road, ran into a wall and as she fell down she went into an attack, she had an attack in the bath etc. Finally it was all taken out of our hands when she went to collect something for me in a supermarket and the next thing I knew was the ambulance men running through the door. They were very insistent that she be taken to hospital (although on the previous occasions that Emily has been taken by ambulance to hospital, the only result is that she spends a few hours in a room and is then allowed to go home) However on this occasion she had to stay in hospital as her blood pressure was very low. She had a couple of attacks in hospital and was monitored throughout. The doctors told us that the attacks were partly due to palpitations and she has ben put on Beta Blockers. Since coming out of hospital on Sunday she has had another 4 attacks so the problem doesn’t seem to be abating yet.
We have found that when dealing with her attacks, she comes out of them much quicker if we are really stern with her and almost shout at her. But even after that, once she has come round, she generally feels really tired and then sleeps for an hour or so.
This is a really scarey experience and I’m really hoping that either the Tiradril or the Beta blockers will start working soon.
I have another question, if that’s okay? The doctors have said that once we can get Emily from hyper to hypo thyroid, which she will return to eventually as she has Hashimoto rather than Graves, they want to operate as she has a 4cm nodule. An acquaintance told me that she also has hyperthyroid and was told that she needed an operation, but after seeing a specialist she was told that the fluid could be removed without surgery. I know that you can’t directly compare cases as they are probably different, but should I be asking for fluid to be removed rather than an operation.
Thanks once again,

[WorriedMum]

in reply to: Diazepam – possible withdrawals? #1072130

Hi,

My daughter has actually been diagnosed as having Hashimoto 3/4 weeks ago but at the moment she is hyperthyroid (I’m not sure if there is a similar foundation for Hashimoto?) She is 13 and is finding the whole experience extremely difficult. She has been taking Tyrodyl for 3 weeks now but most of her symptoms don’t seem to be abating, although I understand that it can take a while for the medication to take effect? Anyway she has hyperventilation/panic attacks, her eyes roll in her head, she feels very cold, she sometimes "fits", she becomes unresponsive, they can last for anything up to an hour and a half. We having been working on breathing techniques and we recognise the signs of an oncoming attack now, I think we are now better at dealing with them (for the first two weeks her teachers at school would call an ambulance each time an attack occurred, I spent more time in casualty than out of it. Now I sit outside school each day and when she has an attack, I can go straight in and sort her out without the need for an ambulance).
This week, her attacks have changed, she was having an attack every other day, more or less. She had an attack last Wednesday and then she was fine until Monday when she had a small attack. Yesterday she had two attacks and today she has had three. We seem to be able to get the hyperventilation under control quicker and there is less kind of fitting. She still loses consciousness and her eyes still roll. But these attacks are different in that we can get her around within 20 minutes but then she is very sleepy and tends to slip back into them again, and then you have to start all over again. After the attacks she is very weak and can’t walk etc. and she has a headache, sore throat etc which you would expect. Her previous attacks were more dramatic but once she was out of it, the attack was definitely over. These attacks are gentler but she slips in and out of them.
When she has an attack we give her 4mgs of diazepam. My question is, could the diazepam be responsible for the change in nature of her attacks? And is this a good thing? She hasn’t been to school this week because of the frequency of her attacks, so to me it seems worse although the attacks are less violent.

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