Hi everyone Been having problems over years on levothyroxine , think conversion low .
Decided to see private endo for t3 supplementing as nhs would not prescribe .
Since December 23 , he lowered my thyroxine dose which was then 125 /150 alternate days but I was having most of the typical hypo symptoms on this dose .
He put me on 50 mg levo and 3 x10 split dose of liothyrine . Felt awful ... bloods showed low so he upped levo slowly from 50 to 100 per day, lio kept same .
I then experienced hyper symptoms
Bloods 21 /2/24
Tsh 0.04
T4 14.7
T3 6.4
I contacted him and he said reduce levo to 75
Since I have been on this dose with the 30 mg of liothyrne I am having all hypo symptoms again and in general feel like crap , achy joints exhausted , low mood dry skin , freezing cold hands feet etc .
Bloods 24th March
Tsh 0.15 (0.27-4.20)
T4 8.9 (12-22)
T3 3.3 (3.1 -6.8 )
I see tsh is under 1
But t4 and t3 are low !??
I have contacted endocrine consultant today to see if liothyrine needs increasing .
Would really appreciate any advice as I don't understand too much about numbers really .
I do supplement iron
B12 and vit d , daily but not sure if all are optimal at the minute as have not had very recent Bloods done .
Thanks
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Mazste97
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Can you add reference ranges for each test, they vary between labs.
What was the time you took your last dose of Levo & T3 before this test? Recommended timing is 24hrs for Levo & 8-12hours for T3. Longer or less than these timings gives false high or low.
How are you taking your T3? Its a high dose for a low FT3 result.
So your FT3 result is a false low as more than 12 hours after taking last dose of T3.
30mcgs T3 is a fairly high dose. Suggest you retest with the correct timings. On day before test delay last dose of T3 until 8-12 hours before blood test is due.
Its surprising though that your TSH is only just under range.
OK thankyou Not sure if I can get more bloods done for a month or two but will remember to do that now . So if blood draw is 2 pm take lio at 5 am and no levo that day ..
Do you think I may be having hyper symptoms not hypo then ???
Really you should be aiming to have your blood test as eary as possible around 9am or earlier for highest TSH. It does vary throughout the day. 2pm is too late for a thyroid blood test.
Time when you take Levo & T3 the day before the test to allow 24hrs for Levo & 8-12 hours for T3.
These details are very important to give consistent results that show stable blood levels.
As your TSH isnt much below range I would think you need probably more Levo, possibly slightly less T3 but only change one thing at a time!
Thankyou so much for advice. I will probably wait for next bloods , and do them correctly ... then see if changes needed . Also going to ask for b12 iron vit d etc
Great advice , thanks again ,hopefully I'll get some response from endo too!!!??? ...
As Jaydee1507 has already said, that’s a very high dose T3
Far too dramatic changes
It’s very important to start T3 SLOWLY at just 5mcg initially increase slowly by 5mcg and only reduce levothyroxine by maximum of 25mcg per day
Wait 6-8 weeks then retest
If Ft4 wasn’t too high before adding T3, levothyroxine may not have needed reducing at all
What were TSH, Ft4 and Ft3 results BEFORE adding T3 and reducing Levothyroxine
Very easy to miss your sweet spot and feel worse because Ft3 level is too high or Levo been reduced too much and Ft4 is too low
Do you always get same brand levothyroxine at each prescription
Which brand of levothyroxine and which T3
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Hi I take mercury pharmacy and almus brand levo and thybon 20 henning lio . Private endo has made all above changes . When I went to him he said t4 was high but t3 low and started me on t3 x2 10 mg per day but dropped levo to 50 . Mg per day which I see now is a big drop
I have no reference ranges on gp results for that period unfortunately
Next time I saw him he upped t3 x3 a day 10mg
Then last time he told me to slowly over 6-8 weeks up levo .
I feel there have been many changes over the 9 months iv been seeing him and think yes , you are probably right in that I have missed the sweet spot .
At one point he did suggest x2 lio 10 mg a day with 50/ 75 alt days levo but then said try x3 lio instead .
I am just baffled and so fed up of it all .
Thought I would getting somewhere by now .
Would I be best to drop one t3 tablet a dsy and stay on 75 levo until next bloods do you think ... a bit worried now !???
I take 1000 iu vit d 3
Better you magnesium spray
1000ug b12
Ferrous fumarate 210 mg
Plus a multivitamin and mineral complex
Just finished a course of folic acid as folate was low
They have said in past it is autoimmune yes a few years back I had tpo and tg antibodies done .
Multivitamins never recommended, most contain iodine not recommended for anyone on levothyroxine, but ESPECIALLY with autoimmune disease - Hashimoto’s
Ideally BEFORE starting T3 you would have got all four vitamins tested and optimal
Definitely
First step now is to get vitamin levels tested and optimal
Iron supplements should be at least 4 hours away from levothyroxine and 2 hours away from other supplements
As you have Hashimoto’s
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
OK thanks I ha e been tested for coeliac in past , negative and also tried gluten free diet some years ago. Find it very difficult to stick to and not a great difference in well being . But I will consider trying again .
Will also look into vit testing and better supplementation .
I am also on hrt , menopausal so I k ow some of these symptoms overlap. .
Thanktou for all your help ,
I am a little concerned to up levo to 100. as I had lots of hyper symptoms when on this dose some weeks back as i stated earlier on. ..,with lio x3 I will certainly reduce lio though but maybe just do levo 75 , or 75 /100 alternate days . Could not cope with hyper symptoms again . Feel bad enough as it is . .
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