hi everyone, this is my first post so I hope I’ve put it in the right category. I have Hashimotos and my most recent antibody test showed (tpo) showed at over 600 (apparently the lab can’t process higher than that). I currently take 125mcg of Levo and am tired and struggling to exercise. I’m in my 30’s and have young children. I’d just like to feel well. Should I ask a private endo for t3 to take alongside my thyroxine? Has anyone found t3 has helped them feel dramatically better? I’d obviously have to pay for it. Thank you so much in advance!
should I start t3? Positive experience?! - Thyroid UK
should I start t3? Positive experience?!
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HiRach
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I can add recent blood test results if helpful
Yes please :
TSH / fT4 / fT3 (including lab ranges )
time of test .
and time of last dose levo .
plus any vit D/ vit b12 / folate / ferritin results you have .
free t4 16.2 (10.8-25.5)
tsh 2.34 (0.27-4.2)
t3 4.1 ( 3.1-6.8)
bloods taken at lunchtime and thyroxine taken 7am.
Ferratin 32
Vit d in range
Thank you so much
Have you ever tried a higher dose of Levo ?
those result show that a higher dose of levo would be the first thing to try before going down the T3 route .
Because you tested 5 hrs after taking levo instead of the recommended 24 hrs, that fT4 result is a bit higher than your base level.
That result is only 36% through the range which is pretty low , (and if tested correctly it would be even lower than that). So this shows a dose increase is worth trying.
FT4: 16.2 (10.8 - 25.5) 36.73% (%calculator thyroid.dopiaza.org/ )
And if you'd tested at 9 am the TSH result would have been a little bit higher.
When TSH is over 0.5 / 1 ish , that also shows a dose increase is worth trying.
See this list of references recommending GP's keep TSH between 0.4 /0.5 and 2 /2.5 in patients on levo ... some people need it nearer the bottom end of that to feel well :
healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range,,this post also has references for 9 am testing / 24 hrs gap .. in the replies)
This post explains why getting TSH 'in range' may not be good enough: healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.
thank you so much I’ll write more detail below
Ah ...didn't realise you'd already had a dose increase since those results ..
So you need to be on 125mcg for at least 6 weeks then get bloods retested .
it can take 6 weeks for TSH level to stabilise on new dose .. same for symptoms.
So see what your results/ symptoms are like in a few weeks time .. then decide if further increase is needed.
thank you so much!! Sorry, it was my fault I wasn’t v clear on when the dosage was changed.
I really appreciate your super helpful response. Thank you!
So your TSH is above 2 and to feel well most people need their TSH at or just below 1.
In future we recommend testing at or around 9am for highest TSH and that day take Levo after the blood test. Other wise your measuring what you have just taken and not the stable blood levels.
So firstly you need a dose increase. Gather evidence from hthis group to show to your GP. Pinned posts have some good info.
Ferritin is almost deficient. A level of 30 or under is considered deficient by NICE. Ask GP to do a full iron panel and post results here. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
Vitamin D should be around 100 - 150. In range is not good enough! Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...
Any results for B12 & folate?
So until you get all your vitamin levels OPTIMAL and a higher dose of Levo we won't know how well you are converting and if T3 may help you further. You have a long way to go yet before really thinking about that. Work on vitamins, get that dose increase and get back to us with new results.
thank you so much for your help. I’ll add some details below
Buddy195Administrator
I agree with others that in the first instance you should
a) share key vitamins (with ranges) with us and optimise if needed…. Remembering that ‘within range’ is not the same as ‘optimal’
b) ask for an increase in Levothyroxine and retest 6-8 weeks after an increased dose
Sorry I should have included the vitamin levels
vitamin d was 85nmol
Ferratin 32
Folate was low too ( I don’t have a copy of results)
I’m actually being investigated for malabsorption as I’ve actually been taking prescription iron for around 4 months and it has barely increased. I am also taking folic acid which was also given as a prescription.
I should have mentioned that the endo saw these bloods and increased my Levo from 100 to 125 so I’ve been taking 125 for a couple of weeks now.
I was wondering how I’m converting t3 at present? I’m not sure how to work this out. I was thinking about asking the endo about t3 at my next appointment as I’ve felt exhausted for so long and am really keen to enjoy my young family.
Thank you all so much for your kind and thorough responses. They’re really appreciated and I’ve taken note of all that you’ve mentioned,
Most hypo people have malabsorption as we get low stomach acid. So even with the best diet our vitamin levels get low. Your low levels will give you symptoms in their own right but also mean your thyroid hormone cannot work properly. This is why OPTIMAL vitamin levels are essential.
When you've finished the course of folic acid from the GP you should buy your own and continue to take a supplement of methylfolate. Methylfolate is the active form of folic acid and more people are able to use it better.
What was your B12 result?
Free T4 (fT4) 16.2 pmol/L (10.8 - 25.5) 36.7%
Free T3 (fT3) 4.1 pmol/L (3.1 - 6.8) 27.0%
You had taken Levo not long before the blood test so FT4 will be higher than it really is. For where your TSH is at your FT3 isnt terrible and no doubt working on all your vitamin levels plus extra levo increase/s will help you feel a lot better and help the conversion work better too.
thank you so much! Is it with me taking a digestive enzyme to help me absorb nutrients better?
My b12 was in range but unfortunately I can’t remember what that level was but I can request a copy from gp. It was my folate and iron that were showing up as deficient.
Thank you for info re folate too!
The range for B12 is too wide so its pretty likely yours definitely isnt optimal.
Has GP done bloods for Coeliac disease as they should.
Get yourself some vit D3 +K2 to help it go to your bones. I posted the calculator earlier so you can work out how much you need to take.
You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Get the B12 results and range and post them in a new post if its a few days time.
that’s great, thank you! I didn’t know about the k2. I’ve actually got a blood test booked for a couple of weeks time for celiac. I couldn’t have it done with last bloods as I’d cut most gluten from my diet so I had to
Reintroduce it.
Thank you so much!
Actually I’ve gone through my photos and found a picture I took of the print out…
Folate was <2.2 (3-20)
B12 525 (200-900)
These were from Feb and I’ve been taking folic acid since then along with the prescription iron.
Digestive enzyms may help you absorb more annd you can try adding a teaspoon of apple cider vinegar (must contain the ‘Mother’, see label) to a glass of water before your main meal. This helps acidify the stomach.
Iron/ferritin is notoriously slow to raise. Make sure you are taking iron 4 hours away from Levo as it can affect levo absorption. You could also try taking it with orange juice or anything with vit C as that helps it absorb better.
Your B12 isn't terrible but also not optimal. A B complex is usually recommended to help keep all your B vitamins in balance. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...
thank you so much for all the advice. It’s super helpful! Adding some bits to Amazon now!
Also make sure you take ayour iron well away from any dairy you might consume.
HiRach. To know how well you are converting you firstly need to be on a high enough dose of levo to bring TSH down to near 1 or lower.Once that happens then you know you have given the body a level of t4 that should have been adequate. Then you get bloods taken for TSH, ft4 and ft3 from the same blood draw.
Tsh should be around 1 or lower. You then work out how far your ft4 result is through its range percentage wise and how far your ft3 result is percentage wise through its range. If you are converting well ft3 percentage should just be slightly below ft4 percentage. If ft3 percentage is much lower than ft4 percentage then you are a poor convertor.
On 100mcg levo my TSH was 0.19 (range 0.27 - 4.75) my ft4 was 19 (10 -25) 60% and my ft3 was 4.17 (3.5 - 6.8) 17%. Ft3 was lagging way behind ft4 and with TSH under range it was obvious more levo was not the answer so I was prescribed t3 liothyronine on the NHS .
It then took 2 years of dose adjustments until I found doses I wanted to stick with so it is not necessarily a quick fix. I then fund that even after a further 2 years on the stable doses things were still improving.
thank you so much for explaining this so clearly and for sharing your numbers. It’s really helpful. Did you feel a marked improvement after starting t3.
I think I’ll have to wait and see what impact the increase in Levo has on me. Thank you again!
I felt worse after starting T3 because my well-meaning endo had to follow a protocol which meant a reduction of levo by 50mcg per day and the introduction of 20mcg T3. I worked my way to the prescribed doses.
What should have happened was my levo staying at 100mcg per day because ft4 was only 60% through range and T3 10mcg daily added. But the endo had to follow the guidelines! Anyway fast forward slowly changing doses and I am on 100mcg levo and 7.5mcg T3.
“I think I’ll have to wait and see what impact the increase in Levo has on me. “
Yes, get settled on levothyroxine increass first and retest again in another 6-8 weeks (test early morning and last dose levothyroxine 24 hours before test)
also essential to get all four vitamins at OPTIMAL levels
Meanwhile also consider trialing strictly gluten free diet
See you doing coeliac blood test next week
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
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 or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
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
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
Only make one change or add one supplement at a time, otherwise you can’t tell what’s helping
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
thank you so much for all the detailed information. I really really appreciate it. How long will I have to be on the increased dose of Levo before I repeat the bloods? It has been a couple of weeks so far.
I suppose I was thinking about asking the endo to try t3 as I just want to do as much as I can to feel better,
I’m getting tested for celiac in a couple of weeks but I’ll definitely cut gluten out again after this test is complete.
Thank you again for all the information. It’s so appreciated.
Test thyroid levels 6-8 weeks after any dose change or brand change in levothyroxine
And after any changes like going GF or if changing when taking levothyroxine from morning to evening
all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29
randoxhealth.com/at-home/Th...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £31 via
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
markvanderpump.co.uk/blog/p...
markvanderpump.co.uk/blog/p...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Hi Lalatoot, just a little comment - not everyone's Ft3 lags behind their ft4 percentage wise to feel well. I've been on thyroid treatment for 20yrs & in order to feel well my ft4 & Ft3 have always needed to be closer to the top of each range to feel well. It's just how my body function best. We are all different... so it's more about where in each range you feel best.
waveylines just for the sake of clarification ft3 lagging behind ft4, as my above comment, is how you tell you are a poor convertor which is what I was describing for the poster. It was about finding out if you needed to add T3 to the mix not finding your optimal spots in the ranges.
I hear now that was your intention behind your post. What you actually wrote was If " you are converting well ft3 percentage should just be slightly below ft4 percentage," Hence my comment.
SlowDragonAdministrator
Your ferritin is terrible, in part probably BECAUSE you are not on high enough dose levothyroxine
Request GP do full iron panel test for anaemia
At obvious reason for low iron
Eg heavy periods? Vegetarian? Vegan ?
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
An article that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Effective supplement
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Excellent article on iron and thyroid
cambridge.org/core/journals...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Heme iron v non heme
hsph.harvard.edu/nutritions...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Ferritin range on Medichecks
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
SlowDragonAdministrator
Low folate
Once you finish prescription folic acid from GP
Recommend then starting supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Many, many members find they need to supplement vitamin B complex continuously
How other member saw how effective improving low B vitamins has been
I went private only (no NHS involvement). I struggled for years on levothyroxine T4 medication. I found out I’m a very poor converter of T4 to the most important hormone T3. I was prescribed privately T3 liothyronine combined with levothyroxine T4. Oh boy oh boy what a huge positive impact it’s had on my life. My 3 month private only trial was a definite success. I now get T3 from the NHS. My life has been reborn.
thank you so much for your message McPammy. That’s interesting that you are now getting T3 on the NHS. I will go private initially too. I was wondering which symptoms felt better after adding in t3? I’m generally struggling with low energy feeling exhausted, quite flat and cold. My hair is also much thinner and won’t grow in the way it used to! Thank you so much!
HiRach, I found my energy level was boosted from being virtually none existent for over a year to being able to do virtually all the things I could previously. Loads of things responded well, skin, eyesight, blood pressure, heart rate, mood. The fact I could walk without any trouble was quite remarkable. I found out I was a very poor converter T4 to T3. All I needed was to add some T3! Only going private only worked as the NHS was absolutely pathetic.
Hello HiRach,
Welcome to the forum!
There's lots of experience and knowledge here as you've already found 😊
The admin and other members will offer suggestions to help you. It's a friendly and helpful place.
Best wishes.
Some people with thyroid issues have an problem with converting T4 (Levothyroxine) to T3. People with this issue benefit from taking T3. I definitely fell better with the addition of T3 (Liothyronine). I have felt my best while taking natural desiccated pig thyroid but unfortunately it is difficult to get these days.
I’m new to this as well I’m 38yr male i have greaves disease so in over! But I have my bloods every 6 weeks and they have t3 and t4 so surely they can do the for you??!! You can get private blood test I use #medichecks 2day results emailed better than the docs!!!!!!!!!!! When I go under active I can’t get my ass out of bed literally
thank you so much Rich!
I've been doing T3 monograph for many years and do my v better inn it than on levo. Of course everyone is different. I self medicate and monitor because GPs and endos mostly don't understand T3. But NHS guidelines permit GPs to prescribe it IF you have first had a successful 3-month trial on T3 only initiated by an endo.
Bear in mind that you can only assess the efficacy of T3 once all T4 is out of your system. Have you read Paul Robinson's books? Good place to start with T3 monotherapy.
I really worry about the increasing comments on here that think t3 is some sort of cure-all. I’m really happy that some admin are suggesting levo increases before even considering t3.
Following advice from an endo, I’m now on t3 alone, after years of successful treatment by levo. The change came when my (properly taken) tests showed that I had ceased to convert t4 to t3.
Don’t forget, self-prescribing can be dangerous and wrongly- prescribed t3 can lead to heart problems to name just a few.
My take is simple.
We need what we need.
Just because A needs T3-monotherapy, and B needs T4+T3 combination, and C seems to do OK on T4-monotherapy, that says nothing about what D will need.
All it does is validate that A, B and C's needs are different, all their options are potentially valid, and D might need any of them.
(In time, we might come to a point where it is seen that T4-monotherapy is deprecated. Maybe microdoses of T3 will be seen to be important? But we are not there and don't have adequate ways of dosing. And I do not want to predict the future.)
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