Thyroid function test for DD - satisfactory. Is it worth pursuing privately?

[anagan]

She's 17. This is the 2nd time we've requested for her thyroid function to be tested. She had it tested 2 years ago and it came back normal. We've pursued it again and this time it has come back with satisfactory against her thyroid function and serum folate.

Serum folate = 7.4 T4 = 16.2 TSH = 1.17

There's no follow-up been offered so we don't know what this means. She logged on to her online record and saw the results.

She's continued to put on excessive weight since puberty despite doing sport several times per week and us being a cook from scratch healthy eating family. Aside from that, as a mother, I just sense something is not right. She's got so many niggly symptoms which plague her. Tiredness ( no, it's not falling asleep on the sofa tiredness but she has low energy all the time) dry coarse hair, she is prone to angular cheilitis.

Fat/fluid accumulates in her legs and arms and upper back/neck/face. Her face changes on a daily basis. Sometimes she has some cheek bone definition, other times it is just shapeless. Very dry coarse hair. Bruises easily and heals slowly. Dry eyes. Irregular, heavy, crampy periods. Anxiety. Spots on her face - those pimply ones that are skin coloured just under the surface.

I don't know what to do now. I'd pay for private investigations if there's something this all points to. I am not impressed by the 'satisfactory' results with no follow-up or explanation of what to look for or if/when to repeat tests, or other tests we could request. It was my DH who took her to the GP this time. It was the practice nurse he got to see. The practice nurse ended up drawing a plate of food on a post it note to show my DH what DD should be eating and told him everyone looks different. How does a parent chase this stuff up without looking like we're disgruntled with the way our DD looks (we're not!)

Does anyone have more knowledge with this stuff? Also, if someone is complaining of tiredness, should ferritin be tested?

Assuming those test results are from standard NHS lab ranges, the thyroid results do look okay.

The folate is a bit on the low side, although within normal range so doubt docs would flag anything up. It would do no harm to supplement it a bit with Methyl Folate (not folic acid).

Ferritin can be useful to test, yes.

Have you also thought about things like PCOS?

The thyroid function looks normal. She should make an appointment with her GP to discuss the whole picture .

I have most of those symptoms and was convinced it was my thyroid for years. I pushed and pushed but my blood tests were always fine. Funnily enough, I was also 17 when I first started querying it with my GP.

After 15 years of, frankly, medical gaslighting, I was diagnosed with hypermobile Ehlers-Danlos Syndrome. hEDS doesn't show up on blood tests or scans, they basically just have to eliminate everything else first. However, it explained all of those symptoms and more - IBS, reflux, keratosis pilaris ("chicken skin" texture on my upper arms), varicose veins from a young age. Not to mention a lifetime of bizarre injuries and pain from wonky joints! My upper arms and legs are hugely disproportionate to the rest of me so I suspect lipoedema, which a few studies have anecdotally linked to hEDS.

Plus, I consistently had low folates at every blood test for no reason, and folic acid didn't help. Then I read about a gene mutation that seems to be extremely prevalent in autistic people (I'm autistic, and a huge proportion of autistic people have hEDS - nobody knows why!) and causes - in part - low folates. I immediately bought a methyl folate supplement and, according to a blood test last month, my levels are finally normal.

Please don't think I'm trying to diagnose your daughter, I just want to illustrate that there are conditions that can look like thyroid issues so keep digging. Does she have any other random symptoms? A lot of mine have been lifelong but I would never have suspected they were linked.

PCOS or Cushing's are two potentials if there is a hormonal issue. Nothing wrong with going back ; if she doesn't her GP will assume she is happy .

She also has cold intolerance and her hands look fluid filled - like smoothed out baby hands - and sometimes she gets joint paint in her fingers.

I didn't think pcos because her irregular periods aren't that irregular. More like between 24 and 29 days irregular rather than missing periods.

I don't think Cushing's either as she doesn't have thin limbs and a large stomach. It's more like the other way round. She has a waist and at times a flatter stomach.

One of the thyroid sites said low fsh and low t4 could indicate pituitary gland issues.

My TSH has to be under 1 for me to feel well. I had a battle with my GP about this as he wanted to keep me within the range.

I now just self medicate tbh, but I've been on thyroxine for 25 years so know how to manage it myself.

Ask for a test for Hashimoto's syndrome. If you have it, you need to keep your TSH right down low. I operate well at 0.3-0.5. 0.6-0.7 I feel something is wrong. 0.8+ I am someone else's unmedicated.

Also check conversion of T4 to T3. T3 is very expensive so they only prescribe it if you really need it.

The phrase you need is "Doctor,.I know what the lab tests say but I am asking you to treat me clinically and address my symptoms. "

Thanks for suggestions and especially that wording. Might think about the supplement for low folate and see if she is still tired and make another appointment. Perhaps I'll get her ferritin level tested privately, just to know for sure.