Son has Hashimotos tsh 3.8, ft4 14.9 on last week's blood test but has hypo symptoms - help

[beckykingsam]

Worried about 10 yr old son. For the last two months he has not been himself and has been washed out and tired, losing concentration at school, anxious, pale, little dizzy spells, and tearful. I'm sure these are all symptoms of being hypo.

We were talking about this morning and he said that he feels like his body is shutting down - very upsetting. The consultant has checked his iron levels, which has come back fine. He is also testing son for coeliac but still waiting for those results. His antibody levels are very high when initially diagnosed three years ago, over 12000 and he has a goitre, which was the first sign. He hasn't had symptoms like this before. Bit washed out now and then, but not rough like he is now.

We give him selenium and vitamins without iodine.

He has grown 2cm in last three months, growth on chart seems ok.

I am going to start measuring his basal temperature tomorrow morning when he wakes.

Are there any specialist thyroid doctors anyone knows of in the South/South West? I hate seeing him like this as he is struggling with the tiredness. Would love to talk to someone before rest of results come in and if all ok can tackle Paediatrician.

I wonder if a very low dose of thyroxine/NDT would help him? Feel so bad for him.

Becky

[Hidden]

Hi, I'm so sorry to hear about your son, and I empathise completely with how you feel. I was the same with my daughter whose symptoms started when she was 12. You want to be able to do something for him - of course.

I assume that he is not any any replacement hormones as I guess his tests suggest he doesn't need them. His symptoms however certainly suggest that he does need some help.

We too are in the south-west but had to travel to Birmingham and then London for help. Someone suggested the other day that there might be a private doctor in Bristol who would help. I suspect that the paedietrician is out of his/her depth. That is what we discovered with my daughter, and I think your son really needs to see an endocrinologist.

If you would rather he sees someone privately which might be your best option you can get a list of doctors from Lou at thyroiduk.org.

It's horrible to feel so helpless - I do understand, but I think he needs some specialist help.

Jane x

[beckykingsam in reply to Hidden]

Hi Jane,

Thank you so much for your reply! It's so nice to hear from someone who understands!

Do you mind if I ask you a couple of questions that are bugging me? Did your daughter continue to grow on a steady curve even though presenting with symptoms? Also, was she given medication to help and at what stage? Was this after you sought private help?

I will contact Thyroiduk.org for list of private doctors as Paediatricians I don't think know enough and I think, even though ours is very nice, he will dismiss my concerns and son's symptoms because of their out of date TSH range they use.

Thank you, it has made my morning to get your reply!

Becky x

[Hidden in reply to beckykingsam]

Her symptoms first manifested themselves when she was 12 and she was diagnosed with ME (thyroid tests "normal"). During her teens she had countless more symptoms including ovarian cyst at 14 which was removed by operation, candida, ENT problems, serious shin splints (another operation), loss of confidence and self-esteem, constant unrelieved headache (often migraines) - the list is long! It wasn't until she was 21 and had suspected Glandular Fever that her thyroid was tested again ("normal"!!) which waved a little red flag and I discovered Mary Shomon's site.

What a relief. We had found an answer but GP wouldn't help so we went private and hypo was diagnosed by Dr. Skinner (that was in 2001).

Yes, in answer to your growth problem. Until she was 12 she was the tallest in her year group. She then didn't grow any more till she was 15, when she also had late onset menstruation.

I later learnt that late menstruation, ovarian cysts and cessation of growth are OBVIOUS signs of adolescent hypothyroidism (only the last of these apply to your son obviously). I learnt this from a book in our hospital library!!

She has had 20+ years of misery until we discovered last year what was behind her illness, so I urge you to go NOW for help to someone who knows what they are doing. We were in the dark for a very long time. I hope you can get help for him soon. Would your GP be prepared to send him to a specialist on the NHS? If not or if you are not satisfied with how NHS advises you do not hesitate to go to one of the private doctors.

Good luck and keep in touch. Jane x

[shaws]

This is a book about Hashimotos. I know it's not aimed at children but thought it may be useful as some members have found it so. The author herself has Hashis.

thyroidlifestyle.com/

[beckykingsam in reply to shaws]

Thank you! I will definitely have a look for it.

Many thanks,

Becky

[beckykingsam]

Hi,

Thank you for your reply! I did think his FT4 was on the low side. I will check with the Paediatrician when the rest of his results come back what the actual ferritin level is.

It's so good to hear from people who understand this. I'm going to see if we can see someone privately as he's getting so fed up poor boy! He's determined to go swimming tonight which I know the exercise is good for his thyroid, but not walking to school as think that would be a bit much for him at the mo.

I think we'll try and see someone privately as not sure Paediatrician will do anything about it even though he's presenting with symptoms. He may surprise me - hopefully! But I will pursue this speedily as hate seeing son suffer.

Thank you again,

Becky