Can anyone advise me please? I have spoken to an endocrinologist on two occasions recently and will be speaking to him again next week, when he says he will probably discharge me. It was suggested to me, after seeing my blood test results that maybe I don't convert T4 to T3 very well. My T3 was too low and that if I divided my T3 by my T4 the result should be > 0.23. Anything below that shows that I don't convert T4 to T3 well. Since April 2021 to Nov 2022 I have had four tests and all were below the 0.23. The consultant says that if I were to have T3 prescribed, "I would be at risk of fluctuating levels of T3 in the blood , causing issues with irregular heart beat making it worse, subsequently causing strokes, heart problems and long term osteoporosis." I am a bit confused by this and don't know what to say to him. These were my latest results from November 2021:
TSH 1.3 (0.3 -6)
FT4 20.9 (10.4-24.5)
FT3 4.4 (3 -7.1)
FT4 - 74.4% through range
FT3 - 17% through range
I have high cholesterol, tinnitus, sore neck and shoulder muscles, tired in the mornings, insomnia on occasions, but tired whether I sleep or not, itching scalp and tenderness of skin around my head, and hair loss etc. I was hoping to persuade him to give me a T3 trial, but he says that these symptoms can't all be down to my thyroid. TIA
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Niadancer
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So, many endo's are quite anti T3 and you have likely just met one of them unfortunately and I'm sorry you experienced that.
You can email info@thyroiduk.org for a list of T3 friendly Endos and either get a referral to one of them, or as many do here go privately.
November '21 is quite a long time ago. Has noone tested your thyroid levels since?
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throught the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Thank you for this information. I will complete my profile. My results were Nov 2022 not 2021. The last time I had my vit D, folate and iron checked they were on the high side, in fact my iron/ferritin was very high. I am just about to take a private iron test also. I supplement with folate and vit d. I have vit b12 injections due to pernicious anemia. When I was diagnosed in 2001 with the anemia, my gp told me it was an autoimmune condition and that I should be aware that I may eventually have a problem with my thyroid. By the end of the year I was diagnosed as hypothyroid, so I am assuming it is Hashimoto's. However, when I had a private test in June 2022 , my antibodies were in range.
The NHS only tests TPO antibodies, a proportion of Hashi patients only have Thyroglobulin antibodies which you can get tested for privately.
You probably have room for a small dose increase but might be better off getting discharged from this endo and finding a better one from the Thyroid UK list.
Majority of endocrinologists are diabetes specialists not thyroid
Next step is to get vitamins tested and optimal
Please add results if you have any
We must have good vitamin levels for good conversion of Ft4 to Ft3
Is cause of your hypothyroidism autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies ?
And, if you have autoimmune thyroid disease, get coeliac blood test before trialing strictly gluten free diet/dairy free diet
If Ft3 remains low, despite fine tuning levothyroxine dose and brand, and maintaining optimal vitamin levels and dietary changes ……..then see different endocrinologist
Lists of Specialist thyroid doctors and endocrinologists
My endo is a diabetes specialist. I have been tested for celiac disease - negative, and I have been dairy free for the last few years. If I don't persuade the endo to let me trial T3 then I will go down the private route as many on here are suggesting. Thanks for your comments.
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
Recommend trying gluten free BEFORE considering adding T3
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
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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.
Thanks SlowDragon for this info and advice. I have started gluten free today. My antibody results from June last year are: Thyroglobulin 26 - Less than 115
Thyroid Peroxidase 23 - Less than 34
I was told on another thyroid support page that these results suggest that I don't have Hashimotos. Do you know whether that is likely please?
I was diagnosed with autoimmune pernicious anemia in Jan 2000, and my gp warned me then that my thyroid could also be affected as they often go together. This is why I assumed it was Hashimoto's. I was finally treated in Jan 2001 after being told I was borderline hypothyroid for a few months. These are the only time I have seen any antibody results. Daily levothyroxine is the only treatment I have had. I just assumed that it was all there was until I started to investigate fairly recently. From your reply I think it must be autoimmune. I was just a little confused when someone told me it wasn't.
Yes the accepted conversion ratio when on T4 monotherapy is said to be 1 - 3.50 - 4.50 T3/T4 with most people feeling better when they come in this ratio at 4 or under.
So with a T4 at 20,90 and a T3 at 4.40 - I divide your T4 by your T3 and that comes out at 4.75 showing poor conversion of T4 into T3.
It's just another way to the one you detailed -
the answer is the same in that you are struggling to convert the T4 into T3 - and this can happen because of inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing so whilst we can't turn back the clock we can try to stay positive which I well understand is challenging when not well and with no help from the one person who should know better but has deaf ears.
More easily managed are the core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D that, when up and maintained at optimal levels help convert the T4 into T3.
Do you have any current readings of these ?
I know now I need my ferritin at around 100 : folate at around 20 : active B12 75 ++ ( serum B12 500 ++ and vitamin D at around 100 for optimal conversion of T4 into T3.
Is your hypothyroid diagnosis that of Hashimoto's and auto immune thyroid disease, and you have over range, positive, TPO / TGab antibodies.
If so, you might like to read around on Dr Izabella Wentz's website :-
Not all mainstream medical prescribe T3 - so as already suggested a more sympathetic specialist from the Thyroid UK patient to patient list maybe will be of use to you.
You can also ask forum member in a new post about feedback on anyone you think you might like to see - but we are not allowed to openly talk about any person - so your answers will be by Private Messages and the icon above reading ' Chat '- paper plane symbol - lights up when a member reples to you.
Try telling him that if you took too much T3 those things would probably be true (but not necessarily!). But, you're not asking for an over-dose, just enough to bring your FT3 up to a reasonable level that will make you well.
Given that if your thyroid were working healthily it would be making T3, just taking any amount of T3 cannot possibly cause heart problems, strokes and osteoporosis or 99% of the population would be dropping like flies. The T3 you take in a pill is just the same as your thyroid would make if it could - and your body would make by conversion if it could - it's the exact same chemical compound. So how could it be harmful in a reasonable amount? It's only dangerous if people have Graves' with very, very high levels of FT3, and even then, not all Graves' people are suffering heart attacks.
Your body needs T3 as it is the active thyroid hormone, and is necessary for every single cell in your body to function correctly. And, it's low T3 that causes symptoms like muscle/joint and bone pain, insomnia, loss of hair and hundreds of other symptoms. So, yes, they can all be due to your thyroid. And your high cholesterol is telling you that your FT3 is too low, because it's a hypo symptom like any other.
I don't know if he'll listen, but he might just give you the T3 to shut you up! lol
During my appointment on Friday I was quite surprised when my endo agreed to a 3 month trial without me having to give him lots of reasons why he should! He wants me to have my bloods done first and then he can decide how much etc. Feeling really pleased
The consultant says that if I were to have T3 prescribed, "I would be at risk of fluctuating levels of T3 in the blood , causing issues with irregular heart beat making it worse, subsequently causing strokes, heart problems and long term osteoporosis."
The comment about fluctuating levels of T3 is an absurd comment to make. TSH fluctuates 24 hours a day, and fluctuates to a greater degree than T3. And doctors just love the TSH.
Compare the y-axis for both TSH and T3 graphs in this thread :
One could argue that people taking T3 will temporarily increase their T3 and it may end up higher than the graph for a short time (the graphs are using data for healthy people, not people with thyroid problems).
What doctors never mention is that low T3 / hypothyroidism causes all sorts of problems for the heart and bones too.
Note that doctors often talk about osteoporosis which is a problem with hyperthyroidism, and they claim that hypothyroidism doesn't cause it. But too low a level of thyroid hormones can cause other bone problems. I did notice that the research on the topic that I could find was all old i.e. bones in hypothyroidism are not considered a problem that anyone needs to waste time on, since all they need to do is frighten the hypothyroid patient about osteoporosis - and job done.
Try looking up the statistics on bone and heart issues in the data for Levothyroxine (T4) and Liothyronine (T3), and bear in mind they've been collecting data since 1967. Zero deaths from T3 and 22 deaths from Levo in 56 years, does not suggest that thyroid hormones are dangerous in hypothyroidism.
I would be at risk of fluctuating levels of T3 in the blood , causing issues with irregular heart beat making it worse, subsequently causing strokes, heart problems and long term osteoporosis."
Oh dear!! An ill informed comment!
While T3 is in the blood it remains inactive.
T3 only becomes active when it enters the nuclei of the cells and attaches to T3 receptors
Medics seem to assume that cellular level T3 is always equal to serum level T3.....this is true for the majority of people, but not for all!
Your FT3 result of 4.4 (3 -7.1) is low which suggests the hormone is inadequate for wellbeing.
As a result numerous symptoms are possible
You will not be overmedicated unless FT3 is over range, your FT3 is well within range!
But, having said that, there is a cohort of patients that require FT3 to be high. I am one of that number!
Your labs show poor T4 to T3 conversion....high FT4 with low FT3.
Firstly, you need to optimise your vit D, vit B12, folate and ferritin levels...these support conversion.
How much levo are you taking?
You appear, based on these labs to have room to add a little more T4...(hopefully will convert to extra T3)
However you need a current test before making a decision re T3/ dose
Jaydee has explained testing protocol
But, I agree, based on those old labs, you are likely to benefit from the addition of a little T3.
Could you consider trying a private only endocrinologist. I did this after years of suffering at the hands of the NHS. After 2 consultations I was diagnosed as a poor converter of T4 to T3. I was given a 3 month trial of T3 plus levothyroxine. Hey presto from being in a real bad way suddenly I felt well. I could walk, smile, felt very energised. Lost 4st without trying. Now my metabolic rate was working normally. The 3 month trail was a huge success for me. This could be you also. T3 won’t give you health problems as long as you are dosed correctly. My levels are now optimal and my TSH is not suppressed. My private only Endocrinologist is extremely happy with my outcome not as happy as I am though. My NHS Endo finally buckled when he could see my transformation and now the NHS prescribes my T3. (I do keep an annual consultation with my private only endocrinologist also as a safety net). Go private only if you can. If you’d like my Endo’s details just private message me. Tomorrow I have a consultation with my NHS Endo that’ll be interesting no doubt
Sounds like a very sensible plan not wholly relying on the NHS Endo, let us know how it goes 🤗 I've got a second appointment coming up and every chance we will lock horns!
I'd love to have the name of a good Endo in my back pocket please 🙏
Thanks everyone for all the helpful comments. I feel I have enough information now to put up a good case to the endo on Friday. If I don't succeed I will go down the private route.
The Endos statement, i.e. The consultant says that if I were to have T3 prescribed, "I would be at risk of fluctuating levels of T3 in the blood , causing issues with irregular heart beat making it worse, subsequently causing strokes, heart problems and long term osteoporosis."
How do some Endocrinologists quote 'fairy tales' re T3s. ie. quote from above:
" The consultant says that if I were to have T3 prescribed, "I would be at risk of fluctuating levels of T3 in the blood , causing issues with irregular heart beat making it worse, subsequently causing strokes, heart problems and long term osteoporosis."
That's complete nonsense!!
My body is completely calm on T3 only, ( feel well and have no clinical symptoms and I don't take a high dose.
T4 (levothyroxine) caused me to have severe palpitations that the Cardiologist had to record overnight to try to fathom out why I developed palpitations but T3 alone calmed everything and I have a normal pulse rate. Best of all my body is calm and relaxed.
Inform the Endo to join this website and he wil soon learn 'how best to treat hypothyroid patients' as the majority of members have resolved their symptoms by taking other than levothyroxine.
The following is from a scientist/researcher/doctor (deceased due to a bad fall that caused a bleed in his brain). He was also an Adviser to Thyroiduk and was an expert re T3 (liothyronine) which he himself took.
I do have palpitations already, and they seem to be getting worse. I have been having headaches for which a neurologist has prescribed propranolol. This has lessened the palpitations, but the cost is feeling sleepy and sluggish and so far has not stopped the headaches. I understand what you said about your body feeling calmer. That's how I would like to feel, and I'm sure that I wouldn't need these extra drugs if my thyroid was balanced. They now have me on statins which I gave decided to wean myself off.
Propranolol makes conversion worse. There are other beta blockers they could prescribe if they really think you need one, but propranolol is the worst one to give to someone that is hypo - it's usually used for people who are hyper.
The odds are that you have palps because your FT3 is so low, and they will go when you raise the FT3 level. But it's very difficult to get a doctor to understand something like that.
Thanks. I don't think I can stay on them because of how they make me feel, but now you have said that they make conversion worse I will definitely stop them. It's so good to have all this helpful information from people on here.
I have just spoken to my endo who has agreed to a trial of T3. I have to have some bloods done first and then wait for a prescription, but looking good. Quite surprised.
They often do tell people to drop 50mcgs which can be too much but probably best going along with him.
When you know what dose then come back with a new post. Its best to start on a low dose for a few weeks then add a small amount more depending on what he prescribes.
Very important to check all vitamins are OPTIMAL to help tolerance of T3. Try asking GP to test otherwise, private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
BTW if you just reply to your own post noone gets a notification. Hit the reply button under a reply to who you want to get a notification or you can tag people by typing @thenthepersonsname.
I would definitely ignore what this Endo stated. as I believe it is untrue.
I had awful palpitations when I was given levothyroxine. You can read my 'thyroid history' by clicking on my name and it will take you to my personal page.
Levo (T4) caused me to have awful palpitations - the worst during the night. The cardiologist had to take recordings to try to fathom out why this was happening.
A quote from your post:
"The consultant says that if I were to have T3 prescribed, "I would be at risk of fluctuating levels of T3 in the blood , causing issues with irregular heart beat making it worse, subsequently causing strokes, heart problems and long term osteoporosis."
Well, here I am - a patient who has hypothyroidism and have been prescribed T3 (liothyronine). This is the active thyroid hormone needed in all our T3 receptor cells and our brain and heart have the most.
I don't need a high dose and all my symptoms have disappeared and feel well. I am also energetic due, I believe, to being on the correct replacement for me.
T3 used to be very expensive and that was the main reason for many Endocrinologists or GPs not prescribing it but it is now very reasonable in cost and quite a number of patients have restored their health due to T3.
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