feeling helpless!

[Pussycatlou]

so despite my little girl age 13 losing her confidence, missing school, feeling unwell every single day in life we have got her paediatric follow up letter in for 20/12/23!!! Last bloods early May. We have private healthcare and wondering if now is the time to go private. Assume endocrinology will see her?

[PurpleNails Administrator]

Could you go back to GP and have her thyroid function redone?

Did you look at the private options for companies which offer blood test for children.

Seems absurd to leave for so long.

[Pussycatlou in reply to PurpleNails]

I actually feel this is not being taken seriously. Whether they think it’s normal teenage anxiety but her bloods are off and that’s a fact. She is a healthy child her bloods should not be abnormal. I was having a look at our private health care and none of paed docs are endo. I was actually thinking what you suggested and to get gp to at least repeat bloods including the ones recommended on here. On reading NICE guidelines with subclinical she should have bloods checked every 3 months x

[PurpleNails Administrator in reply to Pussycatlou]

GP can organise thyroid function. We do hear of instances when lab declines to retest within a certain time limit but the previous TSH was abnormally low.

She has never had thyroid antibodies tested either & ideally this should be done too.

[Pussycatlou in reply to PurpleNails]

can a gp test those too? I’ll wait until the 3 month mark and speak to gp about repeat bloods. When her paed doc discussed with the paediatrician with an interest in endo (not endo) he said no need to retest and was fine. Would not treat until undetectable. But going from 0.6 to 0.3 in matter of weeks how will we know if undetectable if we don’t test 🤷‍♀️

[PurpleNails Administrator in reply to Pussycatlou]

GP can request TPO antibodies, & lab can add TG antibodies usually if TPO positive. GPs can’t request TSI & TRab antibodies which are usually associated with hyper.

The TSH should be the focus. I’ve had undetectable TSH at least a decade & less than half of that time were my levels untreated hyper. She needs treatment if FT4 or FT3 is abnormal. & like you say - you don’t know unless it’s tested.

[Pussycatlou in reply to PurpleNails]

my guess is they will be worse. Symptoms are unchanged with maybe more creeping in like migraine. No period for 56 days. It’s awful for her. A daily struggle to be at school x

[PurpleNails Administrator in reply to Pussycatlou]

I get higher frequency of migraines when thyroid levels high.

Dr was quite dismissive of top of range FT3 & say as thyroid in range wouldn't cause migraine & offered little help.

If you reread your 1st post I went into a little more detail regarding antibodies on that reply.

Incase you don’t know - you can click on name / picture & it will take you to your profile & previous posts.

[Pussycatlou in reply to PurpleNails]

thanks. She has never had migraines before but had a true severe one , not just headache but zig zag visual disturbance and numbness down one arm and side of face it was frightening. From what I see there is not a lot we have available for paed endo. A clinic in Glasgow looks good but nhs and I don’t think we would be referred there as not our local health board and she already under local paeds. I would happily pay to get things moving quicker x

[PurpleNails Administrator in reply to Pussycatlou]

Start with GP & test recommended & use private company to fill any gaps in testing.

You may be limited even with private health care. Most endocrinologist aren’t thyroid experts their interest is usually diabetes.

Have complete set of test before seeing any specialist.

I would also speak to dr about migraines if you haven’t. Often treatment isn’t offered unless occurring at a high frequently. Have it on her medication record, sounds partly unpleasant.

You can also contact Thyroid U.K. for list of private thyroid specialist endocrinologists.

[e-mail]

There is often option of zoom call appointment.

[jade_s in reply to Pussycatlou]

Have they or will they also test b12 & folate? I see it was mentioned in the previous post and just want reiterate how important it is for nerve function, among other things, now that you mention migraines & numbness. I hope they will be able to help your daughter soon. With her results, why are they dragging their feet!

[Pussycatlou in reply to jade_s]

I am bemused tbh why we are not more active when she has daily symptoms. I have a good GP so in a few weeks when enough time passes from last bloods I shall ask for blood tests. At least if they come back worsened which I suspect they will have I can call paed and let them know for quicker appoint. I am definitely going to ask for full deficiency screen to be included x

[Anthea55]

You say that TSH has changed in a short time. Were these tests both taken at the same time of day? TSH varies during the day which is one reason why, on this forum, we are advised to take tests before 9am. This gives the highest TSH and makes it easier to compare. TSH has a circadian rhythm.

I googled for "tsh levels change daily" and this is one of the links I found which helps to explain TSH variation and shows graphs.

thyroidpatients.ca/2020/07/...

I'm afraid most GPs and their nurses don't know about timing and will assure you that it doesn't make any difference, so you have to be definite and insist that you need early appointments for blood tests.

My other thought is that it might be worth taking your daughter to a nutritionist. You can find someone through BANT (British Association For Nutrition And Lifestyle Medicine) at bant.org.uk

This page lets you find someone near you. practitioner-search.bant.org.uk

Unfortunately doctors have very little training in nutrition and wouldn't recognise a deficiency if it hit them in the face.

I suggest this because I saw a nutritional doctor when I had problems with my menopause (yes, I know, the opposite end of my hormone journey from your daughter). He recommended changes to my diet and suggested supplements. These were so effective that, although I had stopped having periods my periods came back again and I felt much better. This was long before I knew anything about my thyroid.

I hope some of this helps.

[Pussycatlou in reply to Anthea55]

thank you. I shall have a look. I’m sure her blood tests with different paediatricians were both early afternoon. I just feel it’s all very inconsistent and even taking the blood results out the picture she is a little girl who was a picture of health a few months back and now struggling daily with debilitating symptoms. It’s just such a shame and other than this group I feel very unsupported x

[Anthea55 in reply to Pussycatlou]

I've been thinking about your daughter's zig zag visual disturbances. Then I remembered that flashes of light can be a sign of a detached retina. There are other causes, but a professional eye expert can notice problems or reassure you.

I suggest that you take her to see an optometrist. Get an appointment as soon as you can and mention the symptoms.

Best wishes.

[Pussycatlou in reply to Anthea55]

thank you. I’m a nurse so I had thought of that so we went to a&e. I didn’t want to be complacent with all the wee soul has going on x