Please can I get a view from experienced users of what I should be suggesting to my endo consultant the next time I see him. He is very open to what I have to say but I am currently feeling a bit lost as to what to do.
My main problem at this stage is my weight. I have put on 2 stone in a year due to the issues with my thyroid. I eat very well (c1500-1600kcal a day), I exercise 5 days a week (a mix of weights, boxing and running - I do not do this for weight loss I do it because I enjoy it and always have) and I get a decent amount of daily exercise - always over 10k steps. Even on 25mg of levo and 40mcg of t3 I cannot shift any weight, none.
Background
I was pregnant in 2020/2021 and I think my pregnancy triggered hypothyrodism. I didn't realize for the first year of my baby's life as it was so exhausting anyway I thought it was just lack of sleep causing my symptoms (I was diagnosed with post natal depression by my GP and given Sertraline). In May last year I came to the end of my tether and as I knew thyroid issues run in my family I did a private blood test via Medichecks. This came back with "normal" T3, "normal" TSH and low T4. I went to see my GP who re-did the blood test and said everything was fine, there was nothing wrong with me. I asked for a private referral and saw my endo consultant for the first time in August 2023. He diagnosed me with secondary non-autoimmune hypothyroidism. I had a scan of pituitary gland which was fine so they do not know the cause of the pituitary not working as it should.
I was prescribed Levothyroxine, starting with 50mg and then upping to 75mg after 2 weeks. I felt really unwell from the start (anxiety, bloatedness, feeling of general un-wellness) and bloods came back showing my T4 was too high. We dropped the dose to 25mg and I felt ok on this, however except for a bit more energy I was still having other symptoms like low mood, hair loss, dry skin, weight gain. My next blood test showed that my T4 levels were low again so the consultant said to try to up the levo to 37.5mg a day. I did this for two weeks before massively crashing - I was so low and feeling so unwell I can't even explain. I had to drop my levo again to 25mg. As I expected the next blood test saw my T4 being low again - so my consultant has said I a) have a low tolerance of levothyroxine but 25mg is not enough and b) my body does not convert t4 to t3 well. So he prescribed me T3. He said to take 5mcg twice a day to begin with, then up it to 10mcg twice a day. I did this with no side effects so I have now upped it again to 50mcg twice a day and feel much better for it. I have buckets more energy and I do not feel low (I have dropped my Sertraline from 200mg to 100mg a day). I will discuss the fact that I have upped my dose with my consultant when I see him as I appreciate this is me self medicating - I was just a bit sick of everything taking so long and having to wait to see him every two months before changing anything.
Test results
T4 last tested February 24 - 11.4pmol/L (range 9-22)
T3 last tested June 23 - 3.2pmol/L (range 3.2-6.8)
TSH last tested March 24 - 3.33 mu/L (range 0.32 - 4.94)
Ferritin last tested March 24 - 28 ug/L (range 30-204)
Vitamin D June 23 - 106.3nmol/L (range 50-350)
Vitamins I take daily
Magnesium
Omega 3 Fish Oils
Iron / Vit C (in the evening - I take levo in the morning and T3 in the morning and around 2pm)
Medicine
Sertraline 100mg
If there is anything else I can provide please let me know.
Kind regards
Flo
Written by
flohal
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
When did you increase to 50mcg twice a day? I'm assuming after these tests?
Your results show low levels of thyroid hormone so I am wondering how you are taking your tests?
There is a peak of hormone in the blood immediately and for a while after we take T3 and to capture an average stable blood level its best to time the previous days dose to allow 8-12 hours between last dose and blood test. Otherwise too long and the results show a false low, too shorter time shows a false high.
To know exactly where yu are at we need to see 3 tests all taken at the same time - TSH. FT4 & FT3. Suggest you get some new bloods run with the recommended timings.
How long have you been taking iron and have you tried any other form of iron? If what you are taking isn't working then switch.
Your vit D is good.
Do you have any results for B12 folate? Get tests done if not.
Sorry that was meant to be 20mcg twice a day - I can't seem to amend the post. I found my latest test which shows FT4 of 11.1 (12-22) and TSH 4.6 (0.27-4.20) - and yes these results are before I started taking T3.
I have only been taking iron for 2 weeks regularly as I struggle to find an iron supplement I get on with. I now use a spray called Better You Iron 5mg daily oral spray. Looking back at previous blood tests it looks like my ferritin has always been low but no one has ever mentioned it to me before.
B12 was 425ng/L (range 180-640) in March 24.
I have ordered a test from Medichecks which will check my TSH, T3 and T4. I take my levo in the morning, t3 in the morning and around 2pm. When do you think it would be best to do the test?
Many members have done well with this product. Terrible website but the supplement does seem to work. Take it with Vit C or orange juice to help absorption. Some intolerance of Levo issues can be caused by low ferritin.
For our thyroid hormone to work well we need all key vitamons to be at OPTIMAL levels.
20mcg T3 twice a day is still alot if taking Levo as well. members need levels of both FT3 & FT4 to be approx 70% of range.
For blood tests, the day before test time Levo dose to be 24hours before. Split T3 so that you take 10mcgs 8-12hrs before the blood test is due.
You may find with 40mcg T3 a day it will help to plit it x3 anyway. Perhaps a bedtime dose.
Your B12 is less than optimal which is around 500-550 for a serum test. I'd recommend a good methyl/active type B complex to help keep all the B vitamins in balance. Some suggestions: Slightly cheaper options with inactive B6:
I have ordered a test from Medichecks which will check my TSH, T3 and T4. I take my levo in the morning, t3 in the morning and around 2pm. When do you think it would be best to do the test?
Day before test split T3 as 3 doses ….20mcg in morning, 10mcg 2pm and 10mcg around 8pm
Test BEFORE taking Levo or T3 the following morning
I have now had my medichecks result and I am more confused than ever. My t4 is the lowest it has ever been. Please can you advise what you think it going on? Thanks in advance
Effectively you are more or less on T3 only. I'm getting a bit lost in the detail but if you're only on 25mcgs Levo then having a low FT4 is to be expected.
How long had you been on a stable dose before this test?
When did you take your last dose of T3 before the test? What was the time spacing?
I followed slow dragons suggestion and took 20mcg in the morning then 10mcg around 2 and 10mcg around 8. I tested at 6.30 the next morning before taking any levo or t3.
I have never really been on a stable dose, as my t4 has been so volitole and I don't tolerate levothyroxine well.
You need to decide which way to jump really. Either start adding a little Levo and drop a bit of T3 or drop Levo completely and switch to monotherapy.
Low FT4 on monotherapy isn't an issue but at the moment you're somewhere inbetween.
You say your FT4 has been volatile but have you been careful to always allow 24hrs between last Levo dose and blood test? Timing of blood tests makes all the difference.
So you did the test as recommended and your results will show stable blood levels and be accurate.
I don't do well on levothyroxine. I feel very unwell when I take any more than 25mcg.
I started on 75mcg, my t4 shot up to 30, then I dropped to 50mcg but t4 was still 25.
I tried to take 37.5mcg but I felt really unwell. I got very very low but maybe that was my t4 being too low rather than the levo itself. Maybe I'll have to try again.
I weight 88kg (having out on over 2 stone in a year).
Do you have any other iron panel results, sorry if I missed them - iron, transferrin, transferrin saturation %, TIBC, UIBC, CRP-hs?
How much Three Arrows have you decided to take? (Ps. you do not need any vitamin C with Heme iron.)
Have you in the past supplemented with any iron at all? If so - how much did you, for how long, and what were iron panel blood test results before and after.
Let me know the above, I can give you an opinion on how much, for how long, and when to test next.
I don't have the full suite but my GP has actually requested it so I'll go and have it done to see where I stand and repost on here.
I am still waiting for the Three Arrows iron to arrive, I current use Better You Iron Mouth Spray. When the Three Arrows arrive I think it suggest taking three a day?
I also had a question regarding timing please. I know iron interfears with levo but does it also impact t3? I have just changed to take my levo in the evening when I used to take my iron, so unsure when I should take it now. Currently my meds schedule looks like this:
6.30am - 20mcg t3
12pm - 10mcg t3
2pm - Sertraline, Vitamin B complex, Magnesium, Omega 3's
6pm - 10mcg t3 and levothyroxine
Can I take my iron at the same time as I take my other vitamins at 2pm? Or would it be better to take it just before I go to bed around 9pm?
FallingInReverse this is from today, I have no idea what it all means but my ferritin levels seem to gave fallen even lower. Any help you can give would be appreciated.
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