concerned and frustrated

Hi all, just wondered if anyone could give me any guidance on what you would do next in my position- i have a 15yr old daughter who has been struggling for a long time now, she has all the usual symptom's of underactive thyroid, i took her to her doc last june and managed to get her tsh done which came out at 4.66 but because they decided to change the lab chart from 4.5 to 5.0 they would'nt diagnose her, even though we have 9 close family member's struggling with underactive thyroid and she has all the symptom's?? I did ask if she could trial small dose of levo only to be told no, go home exercise and eat orange's????

I'm afraid i was straight to the point and was not happy so we were referred to a pediatrician who has since passed us on to a CFS/ME clinic who have diagnosed my daughter with CFS, which i know some symptom's overlap with thyroid but when you can see her having all the symptom's you have had yourself it's frustrating. Since the 4.66 tsh result she has been tested a few time's and the result's show she is yo-yoing, they have been 2.0, 1.5 etc she has had a few other test's ferritin folate etc but they never agree to T3 and it's difficult to get T4 done. We recently found out she is vit D deficient which is awful on it's own but watching her struggle for the last couple of year's is heartbreaking and i really don''t want her to struggle any more, even though she is doing everything the CFS clinic have asked of her she is no better.

I have been thinking perhap's it's time for private test's but then i read last night that you can pay out for private only for your doc to not recognise the result.

what should i do? i can't just let her carry on as she is! The fatigue has took it's toll but the thinning hair is upsetting for her along with everything else.

Has anyone got any friendly advice-please.

Kaz65

9 Replies

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  • CFS Chronic Fatigue Syndrome. A syndrome is a bunch of symptoms. You cannot diagnose someone with a symptom, that is a nonsense. Symptoms are caused by something, and it's supposed to be your doctor's job to find out what is causing them. But, not only do they not seem to understand their job, they don't have much of a grip on the English language, either. And they get away with it because people let them! Challenge them! Tell them you don't agree, and you won't accept a 'diagnosis' of CFS for your daughter, because it isn't a disease.

    A TSH of over 3 is hypo - although it's difficult to find a doctor that knows that. And, if her TSH is fluctuating, it means one of two things. 1. She has Hashimotos Disease - did they bother to test her antibodies? 2. The tests weren't done at the same time of day each time. And if they aren't done at the same time of day each time, you cannot compare them. It's best to have a TSH test early morning, before 9 am, and fastong. Just drink water. If you always do that, then you will be able to see if the TSH is really fluctuating.

    It's a good idea to get private tests. But, before confronting your doctor with them, youhave to do your homework. Learn about the disease, so that you can head him off if he tries to fob you off. Remember, he ddoesn't know very much about it himself, but is more likely to listen to you if he feels you know your stuff. You've got to fight this, any way you can.

    So, get the tests done, and post the results on here, and we will bring you up to speed, so that you can talk to your doctor on equal ground. :)

  • Hi Greygoose, thanks for your reply, i will get private test's done and post them on here. I have looked at the test's you can order and then go to a private hospital to have the blood taken but they say you have to be 18???

    I did ask the local nurse this morning if she could take it and then we post it off and she said i would have to ask a doctor first which i did'nt really want to do that for the same reason you have suggested-i need to do my homework before presenting my case(so to speak).

    I know there's a finger prick test you can do but my daughter would prefer to have in taken with a needle? Any idea's we are in cambridgeshire....

    She has had one test for antibodies but is all i hear is the result is normal??

    How many time's have we all heard that and then when you ask for the actual resullt on paper the look on their face is unbelievable but i won't give in.

    Thanks Kaz65x

  • Well, you are legally entitled to a print-out of your results under the Data Protection Act. So, they can't refuse.

    From what I've read on here, it's always a problem getting blood taken which, I suppose, is why BH came out with the finger-prick test. I don't live in England, so I really can't help you with that. Sorry.

  • Hi greygoose,

    ok thanks

    kaz65x

  • The best thing to do is phone Blue Horizon and see if they have any private hospitals near you that will take blood from a child. You will have to pay.

    Also some other posters have said one of their local NHS hospital phlebotomy department will take blood for them for a fee but they are adults. They have only found this out from the hospital itself, or a friendly GP's practice which is sometimes not their own practice.

  • Oh my I feel so sorry for you that must be so frustrating! It's bad enough we have had to suffer through all this but to watch our kids going through it, knowing we are right and not being listened to. Oh it really boils my blood. No one listened to me for years, give it a year and they will have your daughter on antidepressants, I guarantee it, I spent years being ignored cos I was "clinically depressed" after a bout of post natal depression. When I complained my knees and hands hurt it was just arthritis, no blood tests were run or referrals, when I was incredibly tired and had even succumbed to using street drugs for energy it was my mental health, no tests were run. Till a scan on lumps in my throat showed very severe thyroid disease, then I got blood tests my tsh was 75, now I've gone on since then to be diagnosed with autoimmune thyroid disease, autoimmune rheumatoid arthritis which has just progressed two years into diagnosis and I've been diagnosed with rheumatoid lung, I will be lucky to survive another two years.....demand regular testing, demand treatment, you know thyroid disease you are a patient yourself, it's being ignored by doctors even though it runs our entire body, I truly believe had I been noticed and picked up for these diseases before they had completely destroyed my body I wouldn't be considered end stage now at 38 years old and a single mum of four. Sorry to be quite shocking and alarming but it is so annoying to think children should be left suffering when this can be dealt with now before it's too late and messed her life up. I've tried to function for 21 years as a mother and though I don't know when the diseases truly began I think I had them many years.....I just didn't have anyone willing to find out why I was so exhausted all the time. Cfs is just a throw away diagnosis cos they can't be bothered to treat the root cause of the problem. Much luck and love to you and your family. Cherish each other, be the one to demand the help, I wish someone had cared enough to demand that for me x

  • Hi Orchidcass, I'm so sorry to hear of all the problem's you have and i agree i won't let this go because as you know we will do anything for our children and she deserves to be listened to..

    Thankyou for your reply.

    Love to you and your family

    Kaz65 x

  • I don't know anything about being under 18 and the legalities of getting private testing done. The companies doing testing should be able to tell you all you need to know if you phone or email them.

    For info on private testing :

    thyroiduk.org.uk/tuk/testin...

    thyroiduk.org.uk/tuk/testin...

    A popular test on this forum is the Thyroid Check Plus Eleven from Blue Horizon which you can find on this site :

    bluehorizonmedicals.co.uk/

    The test comes in two flavours - a microtainer and a vacutainer one, and you have to choose the one appropriate for you.

    The microtainer testing involves pricking the fingers, dripping blood into little test tubes, and then sending the test tubes back to the company in the post. Results are returned via email.

    The vacutainer testing requires taking a full blood sample from the elbow, for which you would need someone to take blood, and then the tubes need to be sent back through the post (i.e. same as above). Getting blood taken is a problem for many of us.

  • Hi Humanbean,

    Thanks for the info.

    Kaz65x

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