Hi all, much needed advice please 🙏🏼 I despai... - Thyroid UK

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Hi all, much needed advice please 🙏🏼 I despair! (Updated)

CandiR profile image
17 Replies

My poor 8 yr old son (born 3 months prem) has been suffering from multiple health issues, the worst of which have been going on for 14 months now, unfortunately we are (like many!) going around in circles, in and out of GP surgery’s/hospital clinics not getting any answers. We are considering going private, can’t really afford to, but we can’t carry on like this, just feel so sorry for him. (He is already diagnosed with severe asthma, multiple allergies and registered as visually impaired)

I just wondered if any of his more recent symptoms sound similar to hyperthyroidism?? I’d convinced myself this could be the case…..

* Daily bouts of an intense anxious feeling, that comes on in ‘waves’ mostly first thing in the morning and at bedtime, we have to hold onto him and cuddle him tightly until it passes…this happens frequently throughout the day

*Jittery feeling, nervous energy (mistaken for hyperactivity)

*over energetic after foods-high bursts of energy followed by a slump-extreme tiredness

*severe fatigue/exhaustion

*breathlessness

*pale face, black rings under eyes

*bruising easily

*leg aches and pains

* Weight loss, no weight gain since summer 2021 despite being well fed

*Slowed growth rate (a lot smaller than his peers)

* awful tummy troubles - GERD / IBS symptoms, complaining of ‘squishy rock’ or ‘bubble’ in his throat/oesophageal area

Thank you in advance for taking the time to read all of this!

Any advice will be greatly received 🙏🏼😊

Update…..I have received his blood test results, ‘all good’ according to the paediatrician (he’s far from good, he’s still suffering, in fact probably worse) 😕 👇🏼

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HowNowWhatNow profile image
HowNowWhatNow

Hi CandiR

Am sure some people will ask you whether you have any blood test results you can share with us, so I’ll beat them to it. If you do, please can you post them here, both results and ranges?

And a few other questions: what allergies does your son have, have you tried any other kind of diets / dietary restrictions, has he ever had a scan done of his stomach to see if whether or not he is constipated/ has that ever been an issue and has he had any screenings for special needs or have any been suggested?

CandiR profile image
CandiR in reply to HowNowWhatNow

Thank you very much for your reply Geogeor! He has food allergies (anaphylaxis-egg , dairy and soya) and airborne allergies also, so yes, he is on a restricted diet in that sense and I’m extremely careful not to give him anything that triggers his ‘ibs’ such as apple juices, saturated fats, ketchups, beans etc etc!

Re blood tests, we have been waiting since Thursday the 17th for some blood results (thyroid, bone profile etc) but I’m presuming they’d be back by now 😔

In regards to special needs, he never coped well in a mainstream school, everything was too fast paced, he was so tiny and his bad vision did not help. He is home educated now since the start of the pandemic and we work at his pace, he’s very bright and he’s doing so much better in that sense. No health professionals have noticed any autistic characteristics or anything like that 😊 (thank you once again)

HowNowWhatNow profile image
HowNowWhatNow in reply to CandiR

Thanks CandiR, am sure people will reply re: hyper / hypothyroidism when you have some results to pin up here.

And re: gut issues - has he ever had constipation? Doctors sometimes say that diaorrhea in children can sometimes be a kind of overflow. The dark eyes with bags under and not growing is part of why I ask.

Have GPs ever had his Ig (immune deficiency/ sufficiency) levels tested?

One last thing, have you ever tried him on a GF diet?

greygoose profile image
greygoose in reply to HowNowWhatNow

I agree with you, Geogeor. The dark eyes with bags under sounds like low thyroid - the anxiety, too. And not growing could be due to low Human Growth Hormone/possible pituitary problem. Low thyroid and low HGH often go together, although HGH is rarely tested.

CandiR profile image
CandiR in reply to greygoose

Thank you greygoose. Don’t know if this is relevant but my aunty and female cousin on my mother’s side of the family are on Levothyroxine (is that under active thyroid) 😊

greygoose profile image
greygoose in reply to CandiR

Yes, levo is the thyroid hormone, T4, and it is given to people suffering from hypothyroidism (under-active thyroid). It's a condition that often runs in families.

He needs full thyroid testing:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

Vit D

Vit B12

Folate

Ferritin

And, for the lack of growth, IGF1

CandiR profile image
CandiR in reply to greygoose

Thank you for that greygoose, excellent help! Just read your bio, good lord, you’ve been through it! Exhausting isn’t it 😔

greygoose profile image
greygoose in reply to CandiR

It is, indeed.

CandiR profile image
CandiR in reply to HowNowWhatNow

Thank you again Geogeor! No constipation and only suffers with diaorrhea when eaten something that didn’t agree with him. He was tested for Celiac 2 years ago (negative) but no, I haven’t tried gluten free diet! Luckily, he’s attending his allergy paediatrician very shortly, so I’ll have plenty of questions.

Re Ig levels… he has had them tested previously and they did show ‘something’, I’ve definitely questioned the results before, however, If memory serves me correct, I’m always told it’s is to do with his airborne allergies 🤔

HowNowWhatNow profile image
HowNowWhatNow in reply to CandiR

Do you remember whether his Ig levels were low or high? If high, could be to do with infections / allergies ongoing. If low.. it’s a different conversation.

I would - from experience and from what people here say - try a GF diet even if the coeliac test came back negative. As my son’s very experienced gastro said to me, a gluten intolerance can produce major reactions (not just coeliac), too. In my own family, a GF diet has really improved my son’s bowel health. And although none of the paeds doctors, nutritionists and gastroenterologists we saw for him had suggested trying it, when we did (he was about to start school and I wanted to try anything I possibly good before then) it made an improvement, and still does. And if he is iron deficient, when the results come back, doubly good reason to try.

My son’s raised TSH - over several years - reduced after he started a GF diet and has never been as high since. Again, my son’s doctors don’t seem to have twigged about the connections between auto-immune conditions and wheat problems, which many people in this group can tell you about and have benefited from learning about, in their own health.

Has he ever had Ovex, in case he has worms? Might be totally off the cards, just have to ask. Quite common at primary level.

Does he get thirsty much? And have doctors looked into his glucose / cortisol levels if he is having these slumps / peaks / waves of tiredness at the same times every day?

If we was born prem, do you still get any support from his hospital? Or know other prem parents? I know there are lots of conditions / symptoms common to some prem babies and some prem babies need special help with nutrition as they grow up.

HowNowWhatNow profile image
HowNowWhatNow in reply to HowNowWhatNow

I have kids with Ig deficiencies and so have worked my way through the encyclopaedia of weird and wonderful paeds conditions and often been in hospital departments & A&E in the last few years.

Sorry for asking so many questions all the same.

Re: special needs - I mention because you say your son has waves of feelings that come over him every day that you help him with, doesn’t do well in a large school academically / for his happiness, was prem, has allergies & has vision issues and these all seem to be needs - physical and otherwise - that are specific to him, and I think therefore would fit into the realm of what “special” needs professionals are good at. A good special needs person will be thinking about how you / they can best support him in his education and elsewhere given all of these overarching factors together, in the long term. And they will see things in your child that you can’t which might help. I was referred to a special needs professional for my son and found it useful to have the conversations I did. He is not autistic / doesn’t have ADHD / fit into any special need category, either. These are just my parent to parent suggestions, to help you help the health and educational system work for him and you, and give you more clarity.

I would also suggest you ask to speak to a GP even if the results are normal to find out / ask what other tests need to be done, as symptoms are still present.

CandiR profile image
CandiR in reply to HowNowWhatNow

Thank you and no need to apologise Geogeor! I wish the specialists asked me as many questions! Sounds like you’ve (unfortunately) had plenty of experience yourself in this area.

You mention the ig deficiencies, you’ve jogged my memory and my sons results are always slightly raised (did you say that can be from being asthmatic/allergies)

To be honest, the first 6 years of his life were spent in and out of hospital with various, awful respiratory illnesses/viruses/asthma/croup attacks, so when the pandemic came, it was an easy decision for us to take him out of school, he never loved it anyway because he failed to get the help he needed with his visual impairments etc. So technically yes, he absolutely does have special needs! However, we’ve never received much help, so we gave in and took matters into our own hands. 😊 (thanks again) 🙏🏼

lisabax profile image
lisabax in reply to CandiR

When you ask for the blood results, please ask for a full print out (you may already do so) because a GP’s ‘normal’ is not always normal when it comes to thyroid. Perhaps post the results on this forum for people to comment. I hope you get some answers soon!

CandiR profile image
CandiR in reply to lisabax

Thank you lisabax, I’ll make sure I ask for the results today and get copy 🙏🏼👍

greygoose profile image
greygoose in reply to CandiR

Don't ask the doctor, though. Ask at reception for a print-out. In the UK, it is your legal right to have one.

CandiR profile image
CandiR in reply to greygoose

Thank you greygoose, they were done at the hospital on Thursday 15th, I’ll ring the secretary 👍

CandiR profile image
CandiR in reply to greygoose

Hi again Greygoose, Lisabax , Georgeor and all. Re my sons blood results, the paediatrician said ‘all good’

(It’s not all good, he’s still suffering)

So I asked for a print out as you all recommended.

I’d be extremely grateful If anyone were to be able to take a look 🙏🏼😊

Paediatric blood test results-query thyroid problems

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