I posted a few months ago about my 13 year old son and got some great support and help from this site and it's members . After much testing we have been through the mill chasing an answer and I would value any opinions.
Our endo has done lots of testing but has left us confused and I have had to chase him up.
My son had his appendix out in Dec 2016 and gradually became more fatigued and unwell over the past 6 months ( lots of hypo symptoms- extreme fatigue, hair loss, overheating, dry skin, poor appetite...etc). Had a terrible time with no school support while he has been unable to attend and although we are starting half days at school and having home tutors he remains fatigued and can sleep 3- 4 days normally for 12 hours then his sleep/wake cycle shifts and he can be up all night or for 24-36 hours before he ultimately crashes.
Results so far
April
ferritin 23 (30-400) - on ferrous fumerate
June
TPO neg
IgA neg
TSH 2.86 (2.7 - 4.2)
Free T4 11.78 (12-22)
Ferritin 33.8
Vit D 19.1 (<25 severe)
Mono screening neg
Started on 10,000 units vit d for 8 weeks.
July
Thyroid scan - 'multiple tiny peripheral cystic nodules on both lobes which may be an early feature of modular thyroid disease'
Aug
TSH 3.75 (0.27 -4.2)
Free T4 14.46 (12-22)
Free T3 6.9 (3.1 -6.8)
Ferritin 48.2 (30-400)
Thyroid receptor antibodies <0.4 (0-0.4)
He is on no medication.
My questions are
Can T4 improve itself ( it was taken at the same time of day)?
Is his TSH too high?
Why is his T3 too high?
He is thankfully much better but still not himself. Endo did not encourage any supplements except maintenance vit d at 400 units a day and has referred to neurologist for sleep problems but doesn't feel that he has any endocrine problems!
Would value any thoughts and advice..thanks!
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Scottie04
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If he has a diseased thyroid his fT3 and fT4 will fluctuate as it spontaneously releases hormone.
How long has he suffered from these sort of symptoms? There is a rare form of resistance to thyroid hormone that is genetic. Patients can be normal as long as their thyroid is able to pump out large amounts of hormone but it may eventually start to fail and then. they become clinically hypothyroid even if their hormone levels are normal or elevated a little. It would be worth asking his endocrinologist to consider this. He would need an endocrinologist's referral to Addenbrooke's hospital in Cambridge for investigation.
Thanks! Feeling abandoned by his endo as he's referred to neurologist for tests now. He started to feel unwell in Jan, a little worse Feb then March was yuck,slept through most of April May June with crippling fatigue. Gradually coming out of it but lies around most of the time and after doing activity needs a day to recover. Dr also mentioned post viral fatigue. Trying to find out other leads of what other questions to ask as getting nowhere fast.
OK It's not resistance to thyroid hormone. Could be 'non-thyroidal illness' (NTI) which used to be called 'euthyroid sick syndrome'. This is where an illness disrupts the thyroid for a period of time. If so, he should gradually recover but since low thyroid can affect levels of vit D, iron etc. it makes sense to keep an eye on them and supplement.
His vit D was very low and I would increase his supplement to 800 as the summer is over. His TSH being a little high could signify the onset of a failing thyroid but perhaps is more likely to be because he is recovering. It would make sense to keep an eye on it and have a TSH, fT3, fT4 blood test in two or three month's time. You will then be able to see if his thyroid is getting better or worse.
Thank you for your posts. Have chatted to a few different therapists ( kinesiologist, naturopath, nutritionist) and adrenal fatigue definitely came up and trying to get his body to optimum levels of vits and minerals. Was thinking if doing a urine test to check levels of all vit/minerals to see what he is still deficient in or what we need to supplement him with. Unfortunately he is needle phobic and blood tests are very traumatic and has to be sedated! Stress is a big contributor to how he feels so we are learning strategies to deal with that and transition back to school.
Thanks for listening and your input is very helpful.
I think stress is a huge issue. Try to help him avoid stressful situations and make time for relaxation, massage, sleep, long baths etc. My teenage daughter had chronic fatigue with very low cortisol following glandular fever 3 years ago. It's been a long road but she's now pretty much recovered. Sleep and rest, a gluten free low sugar diet and getting her vitamins and minerals up have been important factors in her recovery. Good luck x
Josiesmum was going to ask you how you diagnosed low cortisol and what you did to try and correct it? I think my son,after a transient thyroid attack, has adrenal fatigue. Any advice would be welcomed. Thanks !
She had a 9am blood test, it's important that it's done at 9am as the NHS reference range is based on 9am test. Her cortisol was around 150-200 so pretty low (ref range over 400). She had a short synacthen test at the hospital which came back negative for Addison's so no further action. I researched online and we went to see a doctor privately. We put her on lots of supplements to improve deficiencies and also on a Paleo Autoimmune diet as she was having so many food reactions:
I believe this gave her overactive immune system a break and along with lots of sleep and rest her health has gradually improved. She gradually reintroduced foods she had cut out and has now reintroduced most things except wheat which seems to be particularly problematic in her case so she continues to eat wheat free and low sugar.
My theory is that when she got glandular fever her immune system spiralled out of control and she was reacting to everything. The adrenals were working so hard to calm the inflammation that they became exhausted. The "adrenal fatigue" theory isn't universally accepted but it makes sense to me in her case. The body does repairs during periods of rest so relaxation and good sleep combined with anti-inflammatory easy to digest foods are particularly important IMO x
Great info thanks. His endo has passed us onto a neurologist as his thyroid hormones are now in range-ish!! He is questioning narcolepsy but I think cortisol and adrenal has a lot to do with it but he has not gone down that road at all. Think I will do an at home cortisol 24 hour. My son never sees the light of day in a morning...either been up all night and now crashed or went to bed at 11pm and sleeps a good 12 hours plus a day. What you say makes a lot of sense to me and will look into all of it. Hope your daughter continues to improve and be healthy and that you are getting through this tough time too. My friends have been great but haven't lived through it so great to hear from others who understand. Xx
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