HiI have a conversion problem and have been put on T3 20mcg (10 twice day).
I am still feeling quite bad and my bloods came back showing low t4 which I expected but was wondering if the T3 is making things worse? Everything is still pretty low. My endo suggested going up to 30mcg daily as my t3 is still quite low. It is in range but lower range.
I have hypopituitarism and this seems to have affected my thyroid as well as hormone levels.
Is it right to increase my T3 or is it ok at this range?
if on JUST T3 most people would need at least 40mcg per day ….and 60mcg is more likely
However you have to increase the dose SLOWLY upwards
Suggest you initially increase by 5mcg as a third dose
So 3 doses per day
10mcg waking, 10mcg mid afternoon and 5mcg near or at bedtime
After week or so increase last dose to 10mcg
Retest in 6-8 weeks
Test early morning around 9am
Last dose T3 should always be 8-12 hours before test
ESSENTIAL to test vitamin D, folate, B12 and ferritin
When were these last tested
What vitamin supplements are you currently taking
Yes I had a tonne of testing done privately and no hasimotos and neg antibody test, the only other flag was my IGA 1 was low which as I have alot of other guy related health issues they explained that is why.
My ferratin has always been on the lower side, I assume due to my gut digestive issues. I take chicken livers in small quantity to try and boost this. 25g per week roughly. My other bloods showed ok, pretty much mid range or above. My vitamin D is suffering as a result of less sun I think and I can't take any vitamins due to my gut issues and they don't absorb well or have tonnes of additives such as fake sugars/cellulose (sprays etc). I found the gaps diet so I try and do my nutrition via food if possible alongside my AIP diet.
It seems to be my pituatry that is not working, not sure if my thyroid caused this or if it is the other way round but all my other hormones are on the lower side too.
This came to light after having a large bowel operation.
Thanks I will increase slowly and fingers crossed it helps. I test at 8am everytime or thereabouts fasted and don't take my meds from afternoon onwards.
Thanks for help
How low is vitamin D
Have you tried vitamin D mouth spray
Many many members find mouth spray vitamin supplements are excellent as avoid poor gut function issues
You can get all sorts of supplements now as spays
Better You vitamin D with K2
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
ESSENTIAL to have GOOD vitamin levels
84 with ref between 20 and 162. Normally it is way way above this when I can get sun exposure to my stomach in the summer. Yes iv tried everything under the sun to get vitamin D. I own shares in Holland and Barrett/ amazon . I am allergic to fish so even code liver oil is out. I was considering ghee but I am concerned as I am gluten dairy and grain free on my diet
vitamin D at 84nmol is reasonable, especially in winter
Can you tolerate taking Better You vitamin D spray ?
if yes, which one have you tried
betteryou.com/collections/v...
With thyroid disease we frequently need much higher dose than typical
Are you also taking any magnesium supplements
Hi. Yes this was one of the first I tried but it terribly effected my bowel after my surgery (resection). I ordered another one last night sublingual on Amazon which is just oil and vitd so I will update you.
Yes taking magnesium thankfully.
I also take hunter gather liver / heart and kidney pills which are loaded with vitamins just as an FYI for anyone struggling to get b12. They very much improved mine especially if you cannot tolerate actually offal. Same principle as dessicated thyriod I believe just offal in pill form. Anyone with histamine issues may want to start slow with them. But the kidney actually helps DAO for anyone with MCAS. Just as an FYI incase anyone struggles and I miss the post on it.
The one I struggle the most with is vitamin C. I don't absorb any fruit or anything sugar/sugar free.
Prior to my operation I took saurkret which was amazing for it.
I will keep trying diff vitamins in diff forms/ retest and if I find anything helpful I will let everyone know.
I am currently trying to sort out my ferratin issue as I am told I am not anemic but have low iron. I can't do tablets but do take offal/chicken/white meats and abit of red meat but it doesn't improve to my liking. Nettle tea brought it up slightly but think there is something else going on that my GP and GI just seem to dismiss me about
Ferratin
Hematology... something doesn't seem right to me think this is affecting my ferratin
How long ago were these tests done
So what’s been prescribed for your dire ferritin levels
Will tag humanbean and SeasideSusie to comment
You need to significantly increase iron rich foods in your diet
Marz might have suggestions too
Nether levothyroxine or T3 will “work” with such dire ferritin levels
is your endocrinologist aware of these results
Yes I sent him all my bloods but he never mentioned the ferratin. I have just known these due to my bowel issues. I'm going to do one myself via your link. My gastroenterologist is useless!!
My diet is meat and veg only, I think it's my bowel not absorbing them. I am abit lost with what else to do but I'll get myself tested. These where tested roughly 6 months ago.
Thanks for confirming, I knew this was going to be an issue. I look like iv got iron deficiency just by look alone! I'll try up the offal and see if it improves it any but due to histamine I can't tolerate too much in one go.
I'll be sure to mention it to Dr when I see him via Skype at start of February.
Thanks for help, I knew I wasn't going crazy!
come back with new post once you get iron panel results
cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Also See page 7 on here
rcn.org.uk/-/media/royal-co...
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.
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...
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...
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...
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...
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. ‘
Here’s absolutely excellent reply by @humanbean
on iron and ferritin panel test results for another member
healthunlocked.com/thyroidu...
Good explanations of iron
theironclinic.com/iron-defi...
theironclinic.com/ironc/wp/...
Helpful info on iron infusion and supplements
healthunlocked.com/thyroidu...
Excellent reply by Blearyeyed about iron in this post
you need full iron panel test
Medichecks iron panel test here
Do test early morning before eating anything
Yes just T3. My endo in Oxford said I am a poor converter so T3 only is best
What’s the reason for your hypothyroidism
Have you had thyroid antibodies tested for autoimmune thyroid disease also called Hashimoto’s?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that 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...
only do private testing early Monday or Tuesday morning
Watch out for postal strikes
Assuming you have autoimmune thyroid disease
You need coeliac blood test done via GP or endocrinologist BEFORE considering trial on strictly gluten free diet
( previous posts indicate you have a pituitary issue affecting all hormones , (and histamine issues , which i know nothing about ) and get specially formulated T3
Did they try giving you any T4 (Levo ) before giving T3 only ?
No, my Oxford endocrinologist said it was best to go for T3 only as he said based on his blood tests (the good ones) I don't convert well .
Yes my liquid T3 from roseway is perfect now. I have terrible mcas and digestive issues
I’m still scratching my head as to why they didn’t bother testing FT3… Total T3 isn’t much use for determining whether your T3 levels are right or not.
I don’t think you’re going to be able to glean very much at all until they do test FT3. Hopefully your doctor will realise that without you having to suggest it!
That said, 20mcg liothyronine per day wouldn’t be enough for most people. I think there is someone on the forum who manages well on 25mcg daily but many people who take T3 end up needing 40-60mcg daily (and sometimes more).
So I am!!! I think it's because (apologies if I sound rude) but she's a money saving idiot. I got my initial diagnosis through private treatment/bloods with my Oxford endo, then he asks for her to do the bloods and she never does them right. But as I don't live in Oxford it's hard to get them done privately.
Brilliant, that's good to know to that I am right to be increasing. I am just finding it hard as I don't eat full meals whereas I snack throughout the day so trying to get the medication at a time of 1 hour before 2 hours after 3x a day is quite tough. I am worried as my stomach delays on emptying that I'm not absorbing it (I have gastroparesis)
I think if it’s getting really hard to work out when to take after/before food, you could think about taking them within a shorter window. It’s got to be something that works for you, so if that means you ultimately need slightly more liothyronine so be it. Consistency is the main thing.
Thank you. Yes I was thinking about splitting it over 2 doses. I seem to do better with it in the morning than in the evening when I think due to gastroparesis I probably still have some food lying in there. I did get it in liquid form in the hope it would help with digestion
Just use Monitor My Health, Medichecks, or Blue Horizon to get tested
Waste of time and effort waiting for NHS to test correctly
Day before test split T3 into 3 smaller doses spread through the day with last 1/3rd of daily dose approx 8-12 hours before test
Many people find it best to split T3 as 3 doses every day…..roughly equal 8 hour intervals
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
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
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 £29 via
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Just to add that when on supplementary T3, expect T4 to go down. That's normal because the body recognises the T3 in the body, so doesn't need to make as much T4 (to convert to T3). Agree your Dr should check your T3. If he/she puts on the lab request that you are taking T3, that should do it.
I'm going T3 only again for the second time. Total T3 lab is helpful to people who may have unique circumstances. It was extremely helpful in discovering what was wrong in my particular situation but only you can determine whether it's helpful or not to you. Both your T3s are low but 20mcg is a low amount. Currently, I'm on 40mcg and feel it's not enough. Honestly, I don't pay much attention to my FT3 and FT4 these days. I dose based upon how I feel. 15mcg at 430am then I go back to sleep, 15mcg at 11am, and 10mcg at 6pm. I don't like taking any after 6pm because it affects my sleep. Although you're not taking the T3 brand Cytomel you may find some useful info from the dosing instructions below.
Marz put this post up yesterday which you will relate to 🤗
Do I need more T3 on T3 only?
T3 only as treatment
Latest bloods on T3 only
T4 conversion query when medicating
