Scores

I have just recieved my sons thyroid test results and they are as follows. TSH 3.3 range 0.4-5 and free T4 13 range 9-19. Can anybody shed any light on these please. We had another dramatic temp drop last night and he is quite poorly today. Docs are really cheesing me off now. Please help!!!

[Chippysue]

Tell us more, what symptoms does your son have? what do docs say?

Is there a family history of thyroid disease?

[Hidden in reply to Chippysue]

Hi, my other post was 12 yr old with health problems. sorry, just getting to grips with every thing.

[RedApple Administrator]

As I suspected, these numbers do fall within the so called 'normal' reference range. That's why the medics are dismissing the thyroid as a cause for the symptoms.

But as TSH is tending towards the high end, and FT4 towards the low end, it does suggest a possible trend towards low thyroid function. This might well be a typical (and all too common) case where symptoms are being experienced long before the blood tests tell the full story.

However, this is only one snapshot. Sometimes a clearer picture can be gotten by comparing the most recent test results with previous ones. Do you have another set of numbers from a test done previously (if I recall correctly, a test was done at the hospital and one previously by the GP)?

[Hidden in reply to RedApple]

Hi Red apple, I don't have recent scores but tests were done when he was only a baby, will these be any good, if so I will chase up the scores.

[RedApple Administrator in reply to RedApple]

No unfortunately the baby tests will not help. Thyroid levels change as children grow, so 12 years down the line things would not be expected to be the same.

As a possible next step, I would suggest asking for another thyroid test to be done through your GP. And at the same time, ask your GP for a referral to an endocrine specialist for a second opinion.

[Hidden in reply to RedApple]

O.K thankyou so much for your help. I did speak with G.P today and he has said he thinks it is an endochrine problem even though the results were normal. He didn't however go any further than that and so I will speak with him on Monday.

[RedApple Administrator in reply to RedApple]

I'm very glad to hear that your GP is not dismissing the possibility. Let's hope he agrees to do another test and that it proves to be a helpful step along the way.

Best wishes and please keep us posted on how things are going.

[Hidden in reply to RedApple]

Could you tell me if i'm right in assuming he will get worst and theres noway this can correct it self. The reason I ask is that he has lost so much schooling and we are now debating whether it is sensible for him to return to school at the moment. We are trying to decide whether a care plan will be enough. I would be very interested to hear how others have managed.

[RedApple Administrator in reply to RedApple]

At this point one can only guess how things will pan out. If thyroid does prove to be the cause of the symptoms, then it is likely that his health will not improve until he is properly medicated. And yes, unfortunately things could get worse before they get better. It's typical to have 'good days' and 'bad days', with the bad days becoming more frequent.

There is also the question of what is causing the thyroid dysfunction. The majority of thyroid problems have autoimmunity as the cause. That can be confirmed by a blood test for thyroid antibodies. You could ask your GP to include an antibody test too. If the antibody test comes back positive, this can help towards diagnosis. Given your family histories, autoimmune seems a strong possibility.

However, it's not impossible for thyroid problems to spontaneously correct. This is one reason why there is such a reluctance to start treatment early.

[Hidden in reply to RedApple]

Is there a time limit on his Thyroid(if this is the case) correcting itself? This particular problem has been going on for a year now. He has had problems all of his life and they checked his Thyroid when he was a baby because of his obesity. At the moment his temp dips and dizzy spells have incresed upto 5 times a week and is affecting his quality of life to (in my opinion) unacceptable levels. He has the specialists scratching their heads. So far we have had EEG, sleep EEG, hearing tests, eye tests, Vestibular test to come at Great Ormond street in October, Tilt-table test . Thyroid seems to be the only thing that makes any sense.

[Bunny in reply to RedApple]

I just wanted to say I feel for you and what you are going through trying to get diagnosis and treatment for your son. It is hard enough trying to explain my own and get answers but the responsibility on you to fight for your son is enormous. As a retired teacher what support if any have you

had from his school?

Good luck for your ongoing battle ....

Bunny

[Hidden in reply to RedApple]

Hi Bunny, school have been horrid. We have had no help. To start with this all started in September of last year. I strongly believe that this was all bought on by stress. Jack has always had problem but his weight is a big issue with the other kids, he was pushed over and the other kids thought it funny and kept doing it and so I do think this was the trigger. He then starting feeling ill at school and I was guilty of thinking this is anxiety. Moving on his dizzy spells became more severe and then in June his attendance was 74% school got welfare involved and threatened us with court. I couldn't understand this because most of the time they were sending him home. After that we had a multi-agency meeting, school said without medical evidence there would be no authorised absences. That was at the end of term. In the holidays he has had all of the tests stated and still no evidence. He is looking sicker by the week and by chance because he looked like he'd been embalmed(and thats no exageration) I took his temperature. 93, I didn't realise the implications of this untill I phoned NHS direct after another episode 2 days later. I am now told if his temp remains that low for upto 20 mins I am to 999 him to hospital. On the first temp reading it took me 2 hours to get him upto 95. We are involved with school nurse but they aren't back untill september. On the multi-agency meeting the nurse was there and said that all the tests were coming back clear and so there is nothing wrong with him. I have even been putting Jack in my bed and he has had episodes then, whilst asleep. He has come off his bike whilst playing, they are just so random and each time it is taking longer to get him right. I just don't see how school can manage this. The temp drop was what brought me to Thyroid. Als given his weight it's the only thing that makes any sense.

[Bunny in reply to RedApple]

Does he actually eat lot to contribute to his weight or not? What is his muscle strength like and his general physical fitness? I think many of our schools Re in crisis and if I told you what they have done for me you wouldn't believe me...but if you wantsomeoneq to help you fight the educTion system I am willing to help...vie been a teacher fir more than 20 years and if you want I v

Can let you have my personal email and take that aspect of it away from this group? Let me know. I am here all night

[Hidden in reply to RedApple]

Thankyou Bunny that would be great. When Jack was born he would put on at least a1lb a week even though he was breast fed hence the thyroid test at the time. When he was 6 months old he looked like he was 2 yrs old. The docs labelled him with Sotos syndrome untill he was 8. That was when a blood test became available and it proved as we thought that he didn't have it. He does have very poor muscle tone and he is hypermobile. School aren't interested in any of that because he played rugby last year. Its a struggle to get him to eat anything he now weighs 11 and a half stone and is 5ft2. Also his OT said he can manage school. He is dyslexic and dyspraxic but I think the clumsiness and most other dypraxic problems could be put down to things such as a thyroid problem.

[Hidden in reply to RedApple]

Just wanted to update on my sons condition at the moment, not sure if this is the place to do it, if someone could let me know i'd be very greatful. The good news is our GP agrees with Red Apple on the low thyroid function and is sending him for more blood tests the bad news is we have to go at 11.50, this is appx time of last test so not sure if this is good or bad but the bad news is we are at the point now of severe leg pain and a lot of facial spots which again we are not sure if this could be thyroid again. Would really appreciate any comments!! Thankyou

[RedApple Administrator in reply to RedApple]

I'm very relieved to hear that your GP is taking things further. Don't be too concerned about the test time, the important thing is that the test is being done and the results can be compared with the previous one. Presumably a follow up GP appointment is booked for soon after to discuss the results?

The leg pain and facial spots can certainly be down to thyroid. An inevitable consequence of an endocrine problem is disruption of all the other hormones, which can cause acne. Leg cramps and feelings of 'heaviness' in the legs (such that it takes a lot of effort to put one foot in front of the other or walk upstairs etc.) are also typical thyroid symptoms.

It's fine to keep posting here

[Hidden in reply to RedApple]

Hi I now have second lot of test results. TSH is 5.3 T4 12. Last results are at the top of page. Thankyou

[Hidden in reply to RedApple]

I should have said that his thyroid anti-body test was normal and his blood count is 11.9.

[RedApple Administrator in reply to RedApple]

Bingo! TSH has risen significantly since the last test, and FT4 has dropped. There seems little doubt now that thyroid hormone deficiency is the cause of many of the symptoms your son is suffering.

Since TSH is also now above the reference range, and given the severity and duration of symptoms, my feeling is that the GP should have no hesitation on starting your son on thyroid medication. Hopefully you will have a prescription for thyroxine in your hand very soon.

Do keep us posted on his progress!

[RedApple Administrator in reply to RedApple]

Antibody test being normal implies that the under-functioning thyroid is not caused by autoimmune attack. For some reason, your son's thyroid is simply not able to output the required amount of thyroid hormone.

[Hidden in reply to RedApple]

Hi Red Apple, I have asked GP what will happen next but he has said he will not prescribe anything because the levels are still to low. He agrees they aren't right but has said he is leaving it to the peadiatrician whom we see at the end of October. He has said that he is going to tell school that he needs someone medically trained with him at all times. We know this won't happen. I don't know what to do now!! How is this likely to carry on, will his symptoms get worst? I suppose I mean all of these temperature drops, which are every 2 days or so now and his legs now ache 24/7, what damage is being done whilst we wait.

[Hidden in reply to RedApple]

Hi again, I have decided this morning to phone the GP. I have left a message to say I want his blood tested weekly until consult with paed. The receptionist tells me this is unlikely but she will ask. My next move will be to get his answer in writing (if he refuses). I will then sit up A & E every Monday morning until something is done. Can anyone tell me if there is anything else I can do? please. Thankyou so much for all your help.

[RedApple Administrator in reply to RedApple]

Oh no, I'm really sorry to hear this - was really hoping the GP would not take this approach. He is obviously more concerned with covering himself every which way. I'll be very surprised if the school is able to provide full time medically trained assistance! On the other hand, if the doctor prescribes this and the school cannot comply, then perhaps that effectively means your son could legitimately be 'off sick' until he's seen the paediatrician? Obviously you need to talk with the school asap.

It's impossible to say how things will progress, but yes, quite likely the symptoms will get worse over the next few weeks. On the positive side, if thyroid does turn out to be the cause of all the problems, most symptoms should gradually go away once treatment is started. It's by no means an overnight cure though, it takes time and careful monitoring to build up the dose and then keep it stable.

[RedApple Administrator in reply to RedApple]

Whilst I doubt you'll get an agreement to weekly testing, it would not be at all unreasonable to expect the GP to agree to another test 4 weeks from the date of the last one.

[RedApple Administrator in reply to RedApple]

By the way, you might get more responses and some different suggestions and opinions, if you write up your son's story so far and post it as a blog. I've noticed that blogs are now getting more attention than the helpvine questions

[Hidden in reply to RedApple]

O.K thankyou so much for your help.