Dr’s appointment this morning to discuss dose increase for my daughter, ‘urgent’ help required 🙏

[J972]

Good morning everyone,

My daughter (17, nearly 18) was diagnosed with hypothyroidism is the summer, initially prescribed 25mcg which was obviously inadequate so she requested dose increase which was granted. She’s been on 50mcg since beginning of September, she initially felt an improvement in symptoms and I noticed that she was losing weight and her skin was clearer (bad acne). After a few weeks the symptoms have returned and she’s back to feeling fatigued, sleeping through two alarms, acne returned, weight creeping up.

We sent in online requests for both a dose increase of Levo and further tests to explore possible anemia yesterday. A GP just called my daughter and it was after I interjected on the call, outlining my concerns, that he asked if we could come in.

She had her bloods checked last week, we also requested that her core vits be tested since she’s supplementing:

TSH 3.34 (0.47-3.41)

T4 12.2 (9.3 - 17.6)

Folate 3.2 (3.1-20.5)

Ferritin 8 ug/L (6-67)

B12 >300 ng/L

Vit D not tested

So obviously her folate and ferritin are woeful. She takes Lipsomal B complex and Three Arrows. I have some folate for her to start taking.

On the phone just now GP referred to her thyroid results as normal, unsurprisingly.

I have the nice guidelines which clearly state that levo should be increased incrementally ‘according to response’ so I feel confident taking about that, but, is there some compelling research or guidelines I can refer to regarding euthyroid TSH levels being c.1? Anything else that might be helpful?

Appointment is at 10.30.

*Many* thanks 🙏

J9

Edit: I’m assuming that the results above have been calibrated using child ranges?

[helvella Administrator]

Paediatric ranges are very similar to adult except at the younger end and few will make any distinction above 16. Also, I doubt they have provided them - we see standard adult ranges being used for the results of young children where it really matters.

As a serum B12 result, that is somewhat low. In the context of someone already supplementing, it certainly looks to need addressing.

[J972 in reply to helvella]

Hi helvella,

Serum b12, apologies. Actual level was 551 ng/L

She was supplementing with a separate B12 but stopped a while back, now just on the B complex. We’re particularly mindful of B12 deficiency given that her dad is functionally deficient and self injects daily.

[helvella Administrator in reply to J972]

That ferritin is truly dire. NICE now blanket recommend all of us have ferritin at least 30.

Of course, from a thyroid point of view, her dose needs to increase - but maybe go gently/slowly. Could you ask for 62.5? A small enough increment that the GP feels it difficult to refuse - but would give you a stepping stone to the next increment. (Whether by alternating 50 and 75 or, in my view preferably, splitting a 25 each day.)

Not a good idea to chase thyroid too hard with such low ferritin and low folate. But don't wait too long before asking for next increment. Definitely test in 6 to 8 weeks - maybe ask for a test form before you leave?

[J972 in reply to helvella]

Excellent advice. We’ll go for an increase of 12.5mcg but, as you say, important to work on the ferritin and folate.

I’ll update later. 🙏

[SlowDragon Ambassador]

was test done as recommended …..early morning, ideally before 9am, only water to drink between waking and test and last dose levothyroxine 24 hours before test

FT4: 12.2 pmol/l (Range 9.3 - 17.6)

Ft4 (levothyroxine) only 34.94% through range

Most people when adequately treated will have Ft4 at least 70% through range

Her vitamin level are/were terrible

Are these vitamin results from last week

Was she supplementing BEFORE these tests or only since had results

She needs vitamin D tested

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

[J972 in reply to SlowDragon]

Hi SD and thanks.

Yes, tested conducted in accordance with suggestions made here, including holding off biotin for a good week. Vit results above are from last week.

So she’s been supplementing since her initial tests in July. Results from then as follows:

folate 2.8 (3.1-20.5)

Ferritin 4 (6-67)

TSH 4.08 (0.47-3.41)

FT4 12.1 (9.3-17.6)

TPO antibodies 201 (0-34)

Vit D 54 (50-120)

I agree, vit D needs checking.

Comparing the two sets of results, her FT4 has barely budged.

Thanks again.

J9

[SlowDragon Ambassador in reply to J972]

What did GP prescribe for her extremely deficient ferritin levels and folate levels

Presumably GP did full iron panel test for anaemia

As she has hashimoto’s GP should do coeliac blood test, if she’s not already on strictly gluten free diet

Has that been done if not it needs doing BEFORE considering trial on gluten free diet

If that was NHS vitamin D test unlikely to get another for 2 years

How much vitamin D has she been taking since July

[TiggerMe Ambassador]

Put in for an early repeat prescription (holiday or something?) if they won't up her dose so that you have some wiggle room to increase yourself 🤗

[J972 in reply to TiggerMe]

She actually has 20 or so 25mcg from her initial prescription left so we have a bit of wiggle room already.

It’s so difficult when it’s your kids….I want everything done “properly “ for her, she’s going to need this stuff for life. On the other hand, I’m more than happy/prepared to fly under the radar where I’m concerned…..

[TiggerMe Ambassador in reply to J972]

Totally understand, you might just have to force the pace with them as you are witnessing the symptoms... I'm suggesting you find the correct dose and tell them

Her results show she needs more 🤗 they are failing her!

They don't seem to understand the damage done in waiting months for improvement when under replaced... especially to a youngster

[J972 in reply to TiggerMe]

Agreed!

So he agreed to increase her Levo actually by 25mcg but she’s going to cut them in half, as per helvella’s suggestion (giving her double the medication). Took some persuading. I couldn’t have spoken with such confidence and knowledge without this forum - thank you so much.

We’ve booked for her thyroid levels to be checked in 6 weeks (8.15am) and she’s also getting a full blood count. The dr is worried about her “tipping into hyperthyroidism “ so will wait to see the results of the next blood tests before adding the additional 25mcg to her repeat prescriptions. In general, a productive appointment.

As an aside, I reordered Three Arrows on the 13th Nov, still no sign of it. Does it normally take this long, do you know? I can’t easily track the package either….

Thanks again,J9

[TiggerMe Ambassador in reply to J972]

Well done you 👏👏 funny how they are resistant and then add 25mcg!!

GP is obviously a bit of an idiot saying she might go hyperthyroid (impossible they mean over medicated) with such low levels 😕so well done for pushing them... you are hardly likely to encourage your daughter to over do it!

Three Arrows doesn't usually take that long but I'm waiting on a delivery from iHerb which came into Heathrow - Preston- Leeds- Bristol ( I'm in the South West so it is getting closer!) 🙃

My last Three Arrow came with UPS which have a rubbish tracking system... seem to remember it took a long time to reach Shropshire for someone else.... No doubt we are getting into silly season

[TiggerMe Ambassador in reply to J972]

Might be worth pinging a message to support to see if they can track?

[SlowDragon Ambassador]

insist politely on “trial” dose increase in levothyroxine

If GP refuses see thyroid specialist endocrinologist

Here’s link for how to request Thyroid U.K.list of private Doctors but also list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[J972 in reply to SlowDragon]

Back in the summer, when she was first identified as hypo & her core vitamins and minerals were tested, I specifically requested a full iron panel from her GP. This was brushed aside and, since we came away with levo (which I wasn’t expecting), I forgot about it tbh.

She hasn’t been tested for celiac’s, thank you for reminding me of the importance of that. I’ve obviously been struggling myself so am not as ‘with it’ as I might otherwise be. You’re an absolute star.

I’ll ask my daughter to send a message to the surgery requesting the test 🙏

She got the increase this time but he took some persuading.

[DippyDame]

The GP should recognise that improvement after dose increase followed by return of symptoms, signals undermedication. Initially the body responds positively then recognises that the dose is actually insufficient and symptoms return.

Nutrients, as you know, are too low and I'd be fairly confident that her vit D ( not tested) is also low. This is likely to impact T4 to T3 conversion....so FT3 likely low.

T3 as the active thyroid hormone, it means that FT3 must be tested to achieve a reliable picture of thyroid function.

If T3 is low metabolic rate will be slow

Science proves that TSH is not a reliable marker....it's not the gold standard test medics claim

Both Frees should be roughly approaching 75% through their respective ranges

It is essential that symptoms as well as labs are considered during diagnosis....medics often forget this.

Ferritin level below c15 indicates low iron storage /iron deficiency anaemia

I hope her appointment went well this morning...sorry this reply is tardy!

PS just noticed your update including....

The dr is worried about her “tipping into hyperthyroidism

Unless her FT3 goes over range it is almost impossible to "tip into hyperthyroidism"....his comment is the result of relying on TSH

thyroidpatients.ca/2021/07/...

Wishing your daughter well

[J972 in reply to DippyDame]

Hello DD,

Thanks for responding. Appointment went well, I’ve just posted an update.

It’s because of forum members like you that I was able to a) realise that she needed a dose increase and b) confidently advocate for her

🙏

[DippyDame in reply to J972]

Well done both of you.

I've just added a PS to my earlier reply re GP's unhelpful comment!

[J972 in reply to DippyDame]

Thank you for that, much appreciated 👌