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[Mummy5]

My little girl who's 8 has all the symptoms of hypo we've been at the hospital in Manchester and the encrinologist is saying she needs to see a phsycologist?! Her tsh results range from 4.1-4.9 her t4 is low but they won't treat her, even the optition and the dermatologist say she has hypo where do we go from here????

[helvella Administrator]

I don't often point at any grammatical or spelling errors in people's posts. But I think you have summed it up:

...the endocrinologist is saying she [i.e. the endocrinologist] needs to see a psychologist

I think the endo is being ridiculous - how can a psychologist, however brilliant, sort a thyroid issue? It is the endo who is nuts.

Please investigate getting a second opinion (there have been posts here about how to achieve that - I don't know much about the process).

Rod

[Mummy5 in reply to helvella]

Hi Rod thanks, I am going to see about a second opinion as the consultant is obviously oblivious that she's poorly,passing each side effect as connected with something else.

[Aurora-auspice]

I was diagnosed with hyper/hypo and antibody positive so hashimoto's started at 9yrs but not tested just monitored had horrific symptoms whole life until got suicidally depressed! In late forties now taking 225mcg levothyroxine just recently reduced from 275/250 mcg alternate days. I wish I'd been referred to Psychologist as Father had just left and beloved Grandfather died all in previous year and bullied at school by headmistress and one teacher starved one day as asked for smaller portion of lunch and I just accepted everything couldn't understand at all despite my apparent intellect and intelligence. Was recently diagnosed as having Aspergers and adult ADHD but wasn't really recognised in my childhood I was just labelled as over sensitive and lacking self-discipline regardless of my obvious attempts to conform and my sleep abnormalities. I believe it is dangerous to be to be to tunnel visioned. I do believe I should have been medicated much earlier for my thyroid problem but not in order to ignore my other areas requiring support! I hope this doesn't seem too opinionated and every case is different of course

Xxx

[merissa in reply to Aurora-auspice]

I had to comment, in terms of Aspergers, I am a parent who has supported families who have kids on the spectrum, I really feel for you being unsupported and you are indeed correct, I wonder if there is a connection with the two, as gluten, leaky gut, anxiety memory, depression hyper and hypo are all smptoms of Aspergers.to name a few. Interesting???

really sorry to hear your loss and how you had been treated especially by people who we trust, it must be difficult for you to trust again.

As you know it is really difficult to get a diagnoses, not to mention support, its forums like this that has helped many others when incompetant bodies do not support those who struggle. Where I live there is no diagnotician and families are struggling with there children and a good psychologist is out of the question.

Maybe one day, there will be a house for Aspergers and thyroid sufferers.

you say you was diagnosed with hashimotos at age 9, your symptoms back then are associated with Aspergers, the two diagnoses have the same symptoms. A majority of adults are given diagnoses when really it is Autoimmune related. For me it has been implied depression and anxiety even fybromyalgia instead of finding the cause.

good luck and thank you for sharing your post. xx

[Aurora-auspice in reply to merissa]

Thank you so much it is very interesting, it all seems so linked that's why I love this site though only a member such a short time! I'm learning a lot because each enquiry, post or comment gives direction to my ever expanding enquiries! I spent most of my adult years diagnosed depression and anxiety but thanks to blood test results unmedicated far too long for hypothyroidism which is probably a big influence on the depression. Diagnoses all seem to fit now like a spider web of linked things many of which have many many shared symptoms it gets very confusing!!! But even with understanding and what seems to be right diagnoses feel as if I'm rotting from inside out! Hit forty and started to deteriorate rapidly and just lost as to what to do for best! Thank you for being so understanding and I didn't want to imply not seeking second opinion I think need both! To not miss anything but as you say good professionals in each sector not always available, funding not always available and support often unavailable so.

The endo that saw me as a child was amazing was looking for antibodies when the others in his team had branded me with a goitre no obvious swelling now! Just wish could have continued with him! He was very ahead of his time as it were. (Probably part savant! He he) certainly austere enough and the adults hated him I loved him though after my first blood test which seemed not much short of a pint he said I was very brave sent me off to X-ray and I passed out walking there he apparently came along while I was still unconscious and I told him he was a very mean man while lying there supposedly unconscious. I had to stay in all day after that! But he visited me often told me I was good girl because had been polite when I told him off for hurting me. My mother told me after what I'd been saying to him! Such a nice man with children!

I really hope I haven't caused offence it wasn't intentional! And I totally agree that these sites are invaluable both for information and support but also to push forward change in present areas of inadequacy within flawed often archaic systems!

Xxx

[Aurora-auspice]

Not treated just monitored sorry!

[shaws Administrator in reply to Aurora-auspice]

I am sorry you have had such an eventful childhood. It saddens me immensely that children suffer so much due to adults' behaviour (as well as losing loved ones at an early age) as it does affect one throughout their whole lives. Kindness goes a long, long way to developing character and your teachers were extremely cruel.

I hope you are feeling much better and hope you are on adequate medication.

Best wishes

[Aurora-auspice in reply to shaws]

Thank you I hope you didn't think i was being too critical I really don't express myself very well even though I compulsively say a lot! Hope i'm being medicated properly but to be honest haven't a clue yet and very reluctant to ask my doctor for even more info or help because she really has done so much for me, thats why i'm absorbing so much from this site! It is very informative and supportive. A marvellous forum! X

[shaws Administrator in reply to Aurora-auspice]

As long as you have supportive doctor - you really cannot ask for more.

[Issy]

Find a better endocrinologist - ask on here for a list of human endocrinologists that can asses humans and not blood tests.

At the minimum, get her T3 checked out.

[CarolineAnne]

I'm sorry to hear about what your little girl is going through. It must be worrying and terribly frustrating. There are some good Endos out there - if you can try to make sure your second opinion is a good one or they may fob you off too. You can ask Louise for the list of good ones. I think that there is a private and nhs list.

Wishing you the best

Carolineanne x

[Hidden in reply to CarolineAnne]

Private GPs, NHS Endos mainly, although I do have 2 Private Endos that we are aware of...

Email me - [e-mail]

One of the Private GPs has a special interest in thyroid kids...

Louise

xx

[merissa]

If the optician and the dermatologist feel your little girl is hyper I would ask them to put it in writing and go back to the GP and then ask for a second opinion, take these evident documents with you on your next consultation and argue you case.

good luck and keep knocking on doors till you get the medication your daughter rightly deserves.

xx

[kezza2shoes]

Must be a Manchester hospital thing! My GP saw all the symptoms and referred me to Manchester endo where I was informed that it was all in my head!

My GP then tested me weekly at different times until my TSH dropped out of "normal" and she could prescribe without question. She was FAB looking at the symptoms first.

Hope you get the treatment your daughter needs.

[penninethyroidgroup in reply to kezza2shoes]

I have seen comments about the Manchester endo on here before. I live in the Manchester catchment area and I have to say I dread ever being referred as I wont be able to keep silent of such 'treatment' I think its appalling so many are being told their symptoms etc are psychosomatic!

[Hidden in reply to penninethyroidgroup]

H your so right i live in manchester and its a nightmare i am hypo on 75mg of thryroxine got to see a endo after much begging and tears what a waste of time , he wrote to my gp that although [ hypothyroidism] i was clinically euthyroid, which means normal, second appointment dates changed six times now , its a joke i am thinking about borrowing the money to go private, as i cannot stand this much longer. does anyone know of a good nhs endo or a private one. x marie

[Muffy]

You urgently need to see another endocrinologist in another hospital.

[fennel]

If this were my problem, I would treat my little girl myself with 'vitamins' and keep her out of a system that seems heading towards harming her.

[Mummy5]

How can you treat this problem with vitamins I'm not trying to harm her at all she's not been well for over 2 years now she's had vits they make no difference she had lots of dif tests done a couple of days ago to see if theirs anything else going on also.

[JoanofArc]

Hi Mummy5,

I don't think Fennel meant that you were trying to harm your daughter. More a case of the 'system' ie; the Endocrinologists, GPs etc are causing harm by not treating her.

I really feel for you. I suspect my daughter to be Hypothyroid at the age of 13 and don't know what the hell I can do about it. Her hair is falling out, she can't concentrate at school, appears to have stopped growing and is putting on weight despite not eating much at all. Six months ago I urged her to go to the doctors (without me) as I felt they would dismiss my concerns. I have been through my own thyroid battle with the buffoons.

At least they had the insight to test her thyroid function. Had another battle to get the results though which were TSH- 2.90 (0.5-3.9mU/L) FT4-11 (10-20pmol/L). All considered NORMAL of course. I certainly don't consider these results normal. It is clear her thyroxine levels are too low, but there is no point challenging them about it. I've been through it all with them and then some with my own health.

I have just ordered some vitamins for my daughter. I know these will do nothing to address the underlying problem. But what can I do about it? Have them diagnose me with Munchausen by Proxy Syndrome? And possible intervention fom Social Services? I am not past believing it.

I feel I am failing my daughter. I can only encourage her to try again with the doctors, but she is very shy and somewhat reticent. She has observed with an eagle eye the lack of care I have received and the struggles I have faced in trying to get help. That sticks. It truly is a diabolical situation for any parent to be in.

If you feel able I would request in writing a report from both the Optician and Dermatologist involved in your daughter's care. The more support you have the better the outcome will be. I wish you the best of luck. Do come back and let us know if you've made progress.

Joan

[Triciatextiles in reply to JoanofArc]

Hi Joan

I have been in the same position as you - my daughter is now 15 and I have known that for at least a year she was hypo - both my husband and I have this so we know the symptoms. My daughter is also on the autistic spectum (so they put her symptoms down to this) and its interesting that you mention Munchausen by Proxy Syndrome because I was branded as this until my daughter got her diagnosis for autisim in December. Now the so called 'professionals' cant do enough for her as I have so much evidence of their neglect they are worried that I might take this further (which I am still considering). She is now on Levo and her energy levels along with other symptoms are improving.

My advice to you would be keep going to the GP for tests - have you had her antibodies tested? If you have the money I would go private to an endo on Thyroid UK list - I am afraid that you cant always count on the NHS.

Tricia

[JoanofArc in reply to Triciatextiles]

Thank you Tricia,

Sorry to hear about your daughter. Good to hear she is improving. Thankfully I have not been branded with Munchausan's yet, but they're saving that one for later !!!

As far as I'm aware my daughter hasn't had her antibodies tested. I think I will try and get these done privately in the near future. As usual money is always an issue but I guess the problem isn't going away.

I wish your daughter continued improvement and I hope you do make a complaint. Fed up of these clowns masquerading as medical 'experts'.

Regards Joan