I was diagnosed with hypothyroidism (autoimmune) April 2024.
I have been back to the GP 8 times with continued and continued symptoms mainly severe fatigue, debilitating brain fog, anxiety , depression and just off balance.
July blood panel showed:
TSH 1.50
FREE T4 13.8 (12-22)
T3 4.1 (3.1-6.8)
the GP has brushed me off numerous times and said it is all in my head I just have mental health issues. After months of research I think I need to try adding some T3 to my levothyroxine (currently on 75mcg)
can anyone recommend how to self source?
thank you
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CAB123x
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I’m not sure that you need T3. An increase in dose of levothyroxine would probably do the job. I take it your doctor is resistant to raising your dosage?
It'll be down to your TSH. Unfortunately happens to alot of us. I waited and waited, getting more and more unwell and decided to go private to get more Levo. Hopefully once I prove I'm better on a higher dose my GP will agree to prescribe it.
What time did you have your blood test? Are you taking any biotin?
Sorry I’m new to this but does taking levothyroxine raise T4 and lower TSH?
I think I’ll have to go private. I had my bloods fasted at 9am don’t take biotin. However I’m thinking of changing to taking it at night purely to make sure I stay away from food and drink. I suffer really bad with anxiety so it doesn’t help that either! X
That's okay, yes levo is T4, so it rases your T4 and lowers your TSH. You may find over the coming months your TSH raises again but GPs are so scared of TSH that if it's in the range they don't like to agree to an increase. My private Thyroid specialist GP said she finds people often don't feel better until their TSH is 0. Something. So under 1.
I am a long way off being well but I'll still need another few increases I think. My anxiety has improved alot since getting to 100mcg however.
Hey there,.looking at your bloods, your T4 is still very low in range and 75mcg is a very low dose, so probably an increase in levo is the first step. Your need your T4 higher in the range and that should bring your T3 up also.
If your GP isn't forthcoming with an increase then maybe look at going private (if you can) to a specialist GP/clinic
Hi CAB123x I'm really sorry to hear about the symptoms you're experiencing—they sound incredibly tough, and you deserve to feel better. I strongly recommend discussing an increase in your levothyroxine with your doctor. Since you started it recently, and both your results and symptoms indicate room for improvement, it’s worth exploring a higher dose. Many people with hypothyroidism find relief with just levothyroxine, and at 75mcg, there's definitely potential for adjustment without concern.
If your current GP isn't responsive to your needs, it might be time to consider finding a new one. Hypothyroidism is a lifelong condition, and you deserve and need a healthcare professional who listens and supports you, rather than dismissing your concerns.
Regarding T3, it's something to consider only after you've given levothyroxine a proper trial, potentially up to a year at the appropriate dose. Best of luck .
Thank you I really appreciate it. Do you know if there’s a link between running and thyroid disease? I was diagnosed just after I ran the London marathon so I’m thinking maybe my body had just had enough of the over exertion!
There is a study about mice and T3 depletion. I think @ tattybogle has it. (I'm on my phone so can't find where I saved it!)
But I was diagnosed after running a half marathon and I am firmly convinced that the training and race was what tipped me over the edge into total thyroid failure.
I can trace symptoms and flares all the way back into childhood but I managed and was functional until the race.
On levothyroxine dose should be slowly increased until Ft4 is at least 60-70% through range
Approximately how much do you weigh in kilo
75mcg is only one step up from standard STARTER dose
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.
Your GP is INCORRECT not to increase your dose
Write to GP with results including percentages through range
And include copies of guidelines (assuming your weight suggests you need next increase to 100mcg )
Have you tested vitamin D, folate, B12 and ferritin
ESSENTIAL to test these at least annually minimum
Exactly what vitamin supplements are you taking
Is your hypothyroidism autoimmune
If GP still refuses to increase your dose levothyroxine
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Vitamin D, ferritin and b12 were all ok. I take selenium and iron supplements only.
I’ve been on 75mcg for 7 weeks, have another blood test on Wednesday but I know they will refuse to increase it. I think private is the only option unfortunately 😞
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
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
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.
Post discussing just how long it can take to raise low ferritin
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
Gluten Free often improves anxiety
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
A clued up medic should look at your situation and increase your levo by 25mcg straight away
Instead they have looked at your TSH and decided that's fine, which is complete rubbish. They must consider FT4 as well and ideally FT3
Your FT4 13.8 (12-22) is 18% through the reference range
Your FT3 4.1 (3.1-6.8) Is 27.3% ditto
We aim to have both Frees approaching 75% ditto
So you can see immediately that these labs are abysmally low, you are undermedicated and need an increase to 100mcg levo/T4
Test again after 6/8 weeks and review the dose
It is vital to optimise vit D, vit B12, folate and ferritin to support thyroid function
Have these been tested?
Fortunately your T4 to T3 conversion is fine so no need to add T3
You will likely need at least 2 further increases of 25mcg levo ie 125mcg levo
Your symptoms are text book examples of hypothyroidism/ undermedication. Tick off ALL your symptoms on the list below and stick it under this medic's nose and ask him on that evidence to give you a trial increase of 25mcg........they like "trial" it leaves them thinking they are in charge!!!
If s/he still refuses an increase then complain to the Practice Manager that this GP isn't listening to you and is refusing to let you trial an increase. Any decision about treatment is supposed to be made jointly with medic AND patient.
Don't accept this poor treatment and the poor knowledge from this medic.....all too common these days
Honestly thank you so much. You’ve made me feel listened to. The GP I saw last time made me cry, I begged him to let me increase due to feeling so unwell and he told me to get out of his surgery and it’s all in my head. I have an appointment first week of November so I will see how that goes, if not I will definitely be self funding privately (which should never have to happen!!!)
if not I will definitely be self funding privately (which should never have to happen!!!)
You will find many U.K. medics have extremely limited understanding of autoimmune thyroid disease
This is by far the most busy forum on HealthUnlocked
Over 140,000 members, vast majority are U.K. based
There’s at least 2 million people in U.K. on levothyroxine. Approx 90% is autoimmune
This is not a rare disease…..but it can be difficult to get treated correctly
Levothyroxine does not “top up” failing thyroid…..it replaces it
It’s important to increase levothyroxine SLOWLY up
You may see TSH has increased at next test 🤞
Initially TSH drops after each dose increase, then as your body gets use to increase in metabolism then TSH (should) slowly rise
However ….many many Hashimoto’s patients have sluggish TSH…..then most important results are always Ft3 and Ft4…..plus OPTIMAL vitamin levels
Low vitamin levels tend to lower TSH
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
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
I'm so sorry about your situation, frankly this " doctor" has no business being anywhere near patients, he should retrain as a pathologist, the dead dont complain and he can be as much of an arse as he pleases.
I think a complaint is in order, even if he does think you have MH issues that is no way to speak to someone in a vulnerable state. Its absolutely shocking. is there another GP you can see?
Your "doctor" sounds like a sociopath. You are clearly unwell and you should be dosing to symptom suppression with one eye on the bloods to check they are OK. Instead he's dosing to the tsh which is not the best nor only metric and ignoring the patient.
Most people would get another doctor or take things into their own hands.
I'm not qualified to advise but would have thought trialling higher doses of t4 would be the next step to discuss with a doctor before considering t3.
Oh it makes me so mad , he shouldn’t be a doctor,I hope you get sorted soon , my dr told me we don’t take any interest in t3 , I said I think if you had a thyroid disorder you’d take notice then , good luck and a big hug
If you do decide to go private there is a list of more helpful doctors available via thyroid uk website. It isnot a good idea to see just any endo, some are as bad as the GPs when it come to thyroid care.
You may yet be one of the lucky ones CAB. You are clearly not on enough Levo and your T3 still manages to make a reasonable showing.
I found 75 mcg a particularly ‘difficult’ dose. I was prepared to put up with symptoms on 25 and 50 because I thought I was getting somewhere. It was quite different on 75 mcg. I was expecting things to settle down. My GP put me on to 75 under a little duress, I thought. In fact I acquired a brand new symptom, which is still with me three years later!
Your GP is obviously terribly ignorant and stuck in their limited thinking. You appear to be in a reasonable place. You just need your next increase in Levo.
I found asking to trial a small increase landed better with my GP than a direct approach for an increase. A trial acknowledges that there will be another blood test to check TSH and I know my practice would push back if my TSH fell out of the bottom off the range. However adding 25 every other day only reduced my TSH by 0.6, so they accepted it ongoing,
I’ve still got some symptoms so I’m thinking about another trial adding a little more
The NICE guidance does support this approach, but most GPs struggle to understand how TSH, T4 and T3 work together
hi, you’ve had lots of excellent advice already, but I just want to echo previous comments about Ferritin. It’s definitely lower than you’d ideally want and if you’re still menstruating and running it’s likely to deplete further. Low Ferritin can cause anxiety / brain fog etc too. It’s common for an endurance athlete to have low Ferritin (as a cyclist I’ve battled it too). I’d work on getting that up alongside your Levo increase. Good luck - you will get well again!
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Any endos prescribing/recommending T3?
Starting T3
T3 of 8.3
T3
Weaning off T3
