Apologies, but I couldn’t amend my original posting! Thank you for your responses and I’ve managed to get the lab result ranges from my daughters doctor:
Her recent blood test was taken at 4.30pm and she missed that mornings dose of Levothyroxine (100mg):
TSH 0.23 (0.27 to 4.2)
T4 15.8 (12 to 22)
T3 4.3 (3.1 to 6.8)
Do you think these results are ok? I know my daughter functions a lot better when her T4 is around 20 and her TSH around 1. Does anyone have any advice on what is happening (over medicated?) - but if she reduces her levo, would her T4 reduce as well?
My daughter was taking 125mg levo until xmas 2020, then changed to 100mg because I was concerned she was showing hyperthyroid symptoms - dizzy spells/fast heart rate, anxiety etc).
The symptoms she is currently experiencing at the moment:
- Flushing (face becomes bright red , especially in cold weather and she is very conscious about this)
- Hair loss (also a concern and she is upset/tearful about this)
- Weight gain
- Concentration issues
- Tired all the time
- Always cold
- Aching legs
My daughters GP advised that her paediatric consultant would need to review her results, but unfortunately this will not be for another couple of months due to this being a new consultant who has not started at the hospital yet!
We are a little stuck with who to talk to in the meantime… maybe a private endocrine or functional doctor appointment?
Also, since my last post my daughter is refusing to take her levo every day - she will now take 100mg every other day.
Thank you for reading and any advice will be greatly appreciated.
Best wishes,
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Flay
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Her TSH will be lower at 4.30pm than if the test had been done as we always advise - no later than 9am. TSH result is important when the doctor is guided by TSH only for dose adjustment (which is wrong but that seems to be what they're taught).
TSH 0.23 (0.27 to 4.2)
T4 15.8 (12 to 22)
T3 4.3 (3.1 to 6.8)
Do you think these results are ok? I know my daughter functions a lot better when her T4 is around 20 and her TSH around 1. Does anyone have any advice on what is happening (over medicated?) - but if she reduces her levo, would her T4 reduce as well?
If your daughter functions better when FT4 is 20-ish and TSH around 1 then no, these results are not OK. FT4 is only 38% through range and if she's better when it's 20, if the range is 12-22 then that would be 80% through range.
Absolutely no chance of overmedication. FT4 is so low. overmedication would be when FT3 is over range. Don't go by TSH which is a pituitary hormone (and lower than normal due to time of blood test), go by the thyroid hormones - FT4 and FT3 and it's FT3 which is the most important.
If she reduces Levo then her FT4 will reduce, Levo is synthetic T4 hormone replacement so take less Levo and FT4 will be lower.
Also, since my last post my daughter is refusing to take her levo every day - she will now take 100mg every other day.
Then she's not doing herself any favours, she is making herself more unwell and will become more and more symptomatic.
Thank you for your reply and advice. I will ensure that my daughters FT4 and FT3 are closely monitored - Im not surprised she is experiencing hypo symptoms based on the advice from members. Her doctors are only concerned with TSH - and her TSH was never really an issue. It was always her FT4 (which was low @ 9.6) and her symptoms which prompted her hypo diagnosis (although my husband had to really argue the case!). Her FT3 is rarely tested - but I will make sure this is always included in her blood tests from now on! Thank you
You appear to have two usernames - Flay and ZOEAF. This can cause confusion when you use both usernames in the same post, it looks like someone new has jumped in and hijacked the post. Also when responders look back at previous posts for information they won't get the full background as not all posts will be under one profile.
It would be better to log out of the one account and not use it again, just stay logged into whichever account you prefer to use and continue to just use that one.
Her recent blood test was taken at 4.30pm and she missed that mornings dose of Levothyroxine (100mg):
Having the blood draw at 4.30 pm means that her TSH is lower than if would have been if the blood draw was before 9 am. And, as doctors only tend to look at the TSH, that can mean the difference between a dose increase and a dose reduction. They just cannot seem to get their heads around the fact that the TSH fluctutes throughout the day: highest at midnight, dropping until 9 am, then a sharp drop until it is at its lowest around midday, then starts rising again until midnight. They seem to think it will be the same whatever the hour.
And, if she normally takes her levo early morning, but didn't take it that morning, the gap between her last dose and the blood draw will have been about 36 hours, at a guess. That is too long, and will have given her a false low FT4. So, those labs aren't really very helpful.
Also, if you want to compare labs, they have to be done under the same conditions every time. We recommend a blood draw in the early morning - before 9 am - after fasting over-night, and a gap of 24 hours between the last dose of levo and the blood draw.
However, the FT3 will not have been affected by any of that, and her FT3 is too low. T3 is the active hormone, which causes symptoms when too low or too high. Hers isn't even mid-range, whereas most hypos need it to be somewhere in the top third of the range. We can conclude that she is a poor converter, and would possibly benefit from the addition of T3 to her dose of levo.
My daughter was taking 125mg levo until xmas 2020, then changed to 100mg because I was concerned she was showing hyperthyroid symptoms - dizzy spells/fast heart rate, anxiety etc).
Those are not necessarily hyper symptoms. So many thyroid symptoms can be due to both hypo and hyper. Fast heart-rate and anxiety, for example. Dizzy spells can be caused by so many things, low B12 for example. Has she had that tested? But, I very much doubt she was over-medicated at that point because her FT3 is so low, it wouldn't have been much higher with the extra 25 mcg levo. And, you are only over-medicated if the FT3 is well over-range.
Also, since my last post my daughter is refusing to take her levo every day - she will now take 100mg every other day.
So, that works out at 50 mcg a day. A starter dose and a huge reduction. She's going to make herself very ill like that. Why is she refusing to take it every day?
Thank you for your fab advice and we are going to ensure her bloods are taken under the same conditions each time (this will have to be done privately because the NHS do not agree!). Her consultant/s have always maintained my daughter is within 'normal' range and never explained anything in the way members have on this site. I have learnt more in the last two days than over the course of 6 years - so a big thank you.
Not surprising her consultants have never explained anything, they don't know anything. Med school training in hormones and the endocrine system is very, very poor. Even the so-called 'experts' know next to nothing about any of it.
What's more, very few doctors understand anything about blood tests. They don't know the importance of timing, or how to interpret the results. But, of course, they think they know it all because they've been to med school! lol
FT4 is only 38% through range, but this would be better at 70% through range or over. FT3 is only 32% through range and again not high enough, esp for a growing girl.
‘Hyper’ symptoms, are not because she is hyper. High and low levels of thyroid levels can mimic each other. Also, for me, and this is my personal experience, pushing my Levo higher in range made me feel ‘Hyper’. Feeling wired, insomina, anxiety but actually my FT3 was just too low and I wasn’t a good convertor. (However again my FT4 was 90% through range - your daughters is no where near that)
Please get her to take her Levo everyday and if she were mine, I’d have her on the 125mcg again and she may need an increase again after her next blood tests. All the symptoms she’s experiencing are hypothyroid. Some people like to spilt their Levo, half in morning, half at night. Although, Levo could also be taken on a weekly basis too if she’s struggling to remember them everyday or it’s a mental block (even adults get pissed off that they’re bound by these little pills and so I imagine it might with worse for teenagers)
Are you getting her Vits and minerals checked too? Just keep building up a history of full results which will help her find what’s optimal for her)
Thank you for your response, I wasn't aware that you could take levo on a weekly basis - this has never been suggested by her drs and I think my daughter would prefer this. I am very concerned about her low FT3 and FT4 - this will need to be reviewed by her doctor (now private) and hopefully she will receive the correct level and type of medication.
I have gone through all of my daughters healthcare letters and there are rarely any values published in relation to her vits and minerals - the letters only conclude that these are within the 'normal' range. But one letter has the actual figures, but its from Jun 2020. These results were returned as 'normal':
Folate: 3.7 (2.5 to 19.5)
Vit B12 396 (180 to 900)
Ferritin 39 (15 to 445)
Vit D 69 (> 50 sufficient for almost the whole population)
This was the last vit/min test.
There were three 'abnormal' results from the same blood test, but the dr was not concerned about these:
As she’s coeliac she’s highly likely to be vitamin deficient
ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12
Exactly what vitamin supplements is she currently taking
When were vitamin levels last tested
Is she absolutely strictly gluten free?
She was taking 125mg levo until xmas 2020, then changed to 100mg because I was concerned she was showing hyperthyroid symptoms - dizzy spells/fast heart rate etc).
Dizzy spells can be low iron/B vitamins
Fast heart rate can be low iron/ferritin or due to being under medicated for thyroid
Do you have test results from when on 125mcg daily
ALWAYS Test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Does she always get same brand levothyroxine at each prescription
Which brand
Her current results show she is now under medicated and needs dose increase in levothyroxine
Come back with new post once you get vitamin results
Initially perhaps increasing to 125mcg 5 days week and 100mcg 2 days a week if she
Obviously reducing dose to 50mcg will make her very very unwell. It can take months to recover from dose reduction
Hi, thanks for taking the time to respond. My daughter has been taking vit D (1 x 25ug/500% NRV) and Ferrous Fumarate (1 x 210mg) for at least 1.5 years. The vitamin D was on advice from her Doctor because her blood results came back deficient. I placed her on Ferrous Fumarate to see if this would help with her energy levels. But, she still has low energy and the chemist advised not to increase her dose due to possible constipation issues. I dont have any blood test results for B12. But I am planning a full screening - this will happen when she sees her new private doctor.
She is currently taking MercuryPharma Levo, but I know she has taken a different brand in the past. I will ensure she takes the same brand each time.
The last test results when she was taking 125mcg:
19/11/2020 TSH 0.06
(this is the only result - no FT4 or FT3)
My daughter is on board with taking her full 100mcg levo dose each day from now on.
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