I posted several times last year about my 18 daughter who was very ill with chronic fatigue and severe bowel issues amongst other things.
We discovered that her FT3 and FT4 were both very low and this was may have been the cause of many of her symptoms. In March last year her Medichecks tests came back as follows:
TSH - 2.31 (0.27 - 4.2)
FT3 - 2.84 (3.1 - 6.8)
FT4 - 11.4 (12-22)
We also discovered her Ferritin was extremely low (12) and she received an iron infusion for this. Her B12, Folate and Vitamin D were also tested several times and these appeared to be normal.
After some extremely helpful advice from people in this group we eventually found a private endo who was willing to prescribe a small amount of T3 to take with her T4. He diagnosed her with central/secondary hypothyroidism although all her pituitary hormones were normal and an MRI scan come back clear.
I am pleased to say that since last year my daughter has made an almost complete recovery - she's just done her A levels which we didn't think would be possible this time last year, and is hoping to go to Uni in the Autumn.
She's currently taking 10mg of Liothyronine plus 50/75 mg of Levothyroxine (on alternate days), and this seems to have been working well. However, her most recent blood tests show that her T3 is now over range at 7.2 (range 3.5-6.5). Her TSH is 0.23 (0.35-5.5) and FT4 13.4 (10.5 - 21). We were very surprised about this as she feels very well at moment and has no symptoms of hyperthyroidism. Her bloods were done at 9am with her last dose of T4 being taken the previous morning and her last dose of T3 being taken at around 10pm the previous evening (in accordance with advice from this group!)
I assumed that her endo would insist on reducing her Liothyronine, however he's quite happy for her to remain on 10mg at least for the next few months so long as she doesn't have any symptoms. My daughter is delighted with this as she's worried that her chronic fatigue may return if she reduces her T3, however I am still somewhat concerned about her over range T3 and what the long term implications of this might be. If anyone has any thoughts on this, I would be really interested to hear them.
Thank you!
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Cookerybookaddict86
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I'm not sure what to advise you about the T3 but just wanted to say that I'm pleased that your daughter had improved so much with correct thyroid treatment. I'm sure someone will offer advice.
Most people feeling well on combination treatment have a low or suppressed TSH. Your daughters FT4 looks low in range at 28%, but some can do well at that level.
What exactly were her B12, folate & D3 results? Normal is not good enough for us we need OPTIMAL levels for our thyroid hormone to work well.
Her Ferritin peaked at 280 a couple of months after the infusion (last July) and it was down to 126.3 last time it was tested (in March) and we're assuming that it's probably dropped a bit further although hopefully not down to 12 again! Its due to be tested again in a few weeks time. After 10 years as a vegetarian, she's started eating meat again, including liver twice a week, which we're hoping will help to maintain her iron/ferritin levels.
Vitamin D was 97.2 when it was tested in October and she supplemented throughout the winter, so we're not concerned about this. Vitamin B12 was 721 (range 211 - 911) in October and Folate (>24).
At the moment she's not taking any supplements other than a gut supplement recommended by her gastro which is meant to help break down carbohydrates.
What I noticed first about being over range at 7.7 with the same range was a slight hand Tremor. I was also keen to keep in range as I am unsure of implications of being over for a long time.I reduced by 2.5mcg leaving me on 7.5mcg daily.
Thank you, that's interesting - she has been advised by the endo to be aware of any symptoms which could be caused by over medication, and although she feels very well at the moment, I am concerned about whether it's a wise to be over medicated on a long term basis.
I would be concerned too. Luckily for me I had some symptoms so it was an easy choice to reduce.It is all trial and error to find the doses when your on combo .
If those were my results I would reduce t3 by 2,5mcg daily. Wait 6 weeks and see how I me felt and what my hormone levels were. If my ft3 had dropped a little lower than I might have liked I would then Inc levo by 12.5mcg daily rather than raising t3 dose again.
I can understand your daughter's reluctance to change doses and to risk going back to the symptom-filled no life that we've experienced.
Making small changes one thing at a time then waiting 6 weeks to see the outcome of the change is the way to ensure that things don't go really awry again. Slow and methodical is the way to go.
Thank you, that's really helpful advice - a reduction of 2.5mcg (from 10mcg) sounds very sensible to me. However, I'm not sure how this would work in terms of tablets. The tablets we have are 20mcg which my daughter splits using a pill cutter - according to the pharmacy the 10mcg tablets are more expensive. However, I'm wondering whether it might be possible to split these into quarters in order to take 7.5mcg.
I am lucky to get my on the NHS and the GP is happy to prescribe 5mcg tabs for me.10mcg will be more expensive. I have managed to quarter levo tablets which are the same size with a pill cutter.
Thank you, SlowDragon for this very useful information.
We're currently purchasing tablets from a private pharmacy (one recommended on here for T3). I hadn't realised that there was such a price difference between the 10mcg and 20mcg tablets. We haven't asked our GP to prescribe the T3 as the answer would almost certainly be no, and my daughter is hopefully off to Uni in September which is going to be another complication!
I get that too, but my FT3 levels usually bumble along at the top of the range and even slightly over where I feel best. I tend to increase my T3 intake during the winter months by around 5mcg (up from 50mcg to 55mcg) but I have to drop it again when the weather warms up a bit because, as you say, you get an “internal jitter” type feeling and shaky hands if I don’t. I only take a token representative 25mcg/day of Levothyroxine so those levels are way below range, but when I try to increase that I feel worse. My TSH has been “suppressed” for years and I don’t think that will ever come back up…
It took a few years of fine tuning, initially with the help of my old endo to get where I am today and the new endos ( does anyone ever see the same one more than once?) are obliging me subject, of course to the usual lectures about osteoporosis (I point them to my DEXA scans which show better density than I should have for my age) and atrial fibrillation (where I offer to send them my ECG readings from my watch I take daily that have never shown signs of AF).
This is very reassuring to hear, thank you. I'm mainly concerned about the risks of osteoporosis and atrial fibrillation with long term over range T3 particularly as my daughter is still so young - its great to hear that you're obviously very healthy despite being at the top of the range.
Personally I would not worry too much at this stage. Leave her where she feels well for a time at least. Her body has a lot of repair work to do. Adjusting doses can happen later if necessary.
I live with permanent Afib. It started before I had heard of T3 and it feels much calmer with T3. Both too high and too low T3 can cause it, but your daughter is not way over, just a bit. The reference ranges are averages. Some of us need to be under them, some over them and some in the middle.
High T3 levels can result in some systems working faster than others. The common issue are are associated with bone health, glucose metabolism and balance of sex hormones (oestrogen & testosterone).
However, some people function best on high T3 and only mindful monitoring will disclose any induced negativities.
So glad to hear your daughter is feeling better! Her symptoms are so similar to my daughter’s, who only felt better on desiccated thyroid (Armour), though the stomach side of things is still sometimes a problem.
My FT3 has sometimes gone over too even when I have felt very well. It comes and goes too, I self medicate and have never had any problems with this. I am in my late seventies so not young but no ill effects so far.
That's great to hear, thank you! We're still hoping that my daughter's over range T3 was a one off result as it's previously hovered around 5.5 since she started taking Liothyronine about 10 months ago.
I hate to say it but I don’t agree with the advice to reduce her dose. You have said she feels very well and as long as she has no signs of tissue overstimulation then I do not believe she is over medicated At this time. The tests are just a guide and were originally designed for use of levothyroxine. I would keep an eye on her hr, bp and temp.
I also think that when testing labs we should just stick with our normal dosing routine rather than taking the meds 12 hours before. However, that is just my own personal opinion due to there being no studies or scientific backing for taking t3 8-12 hours before a testing for accuracy.
I just wanted to point out that although it is usually fine for Levo dose to alter from day to day e.g. alternating 100mcg and 125mcg Levo, someone taking T3 needs to stick to the same dose every day.
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