52 year old female. Postmenopausal - started HRT <2 weeks ago. My free T4 was 10.5pmol/L back in 2003. My recent TPO antibodies was 215Kiu/L
Got my blood test results back today - TSH 1.30miu/l, free T3 is 4.1pmol/L (normal range - 2.4-6pmol/L) and free T4 is 11.8pmol/L (normal range is 9-19pmol/L). GP has marked them as 'no action'.
The blood test was taken at 2.40pm.
My serum total cholesterol level is: 4.9 mmol/l
Depending on the ranges I look at online, my results could be indicative of secondary hypothyroidism, but I feel like I'm hitting my head against a wall with the GP. I've been off work for 3 weeks with fatigue and brain fog, without any improvement.
The GP won't consider a Hashimoto's diagnosis until my thyroid is not functioning.
Have had many hypothyroid symptoms for a while now - tiredness / sensitive to cold / weight gain/ constipation / slow movements and thoughts / muscle aches and weakness / a low-pitched and hoarse voice / thinned or partly missing eyebrows / slow heart rate (60bpm).
Any guidance / direction is greatly appreciated.
Thanks
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Well, your doctor is being very stubborn, isn't he! With that level of TPOab you obviously have Hashi's - or Autoimmune Thyroid Disease as the NHS calls it.
And the problem with Hashi's is that levels tend to jump around, and it takes time for the TSH to catch up. But, what time of day was the blood draw for this test? TSH is highest before 9 am.
I cannot comment on the possibility of Central Hypo (secondary or tertiary hypo) because you have not given the ranges that came with your results. There's absolutely no point looking at random range on-line. The results have to be interpreted with the ranges used by the lab that did your analyses, because they vary from lab to lab. So, if you could add those, please, you'll get more informative answers.
PS raised cholesterol would suggest that your FT3 is low.
The GP has been better since I challenged regarding the possibility of secondary hypothyroidism, as I guess she realised that I knew a little more than most people, who probably would have walked away at that point. Hence getting the T3/T4 tested. I've given up getting a Hashimoto's diagnosis, as she didn't seem to equate fatigue as a symptom of an overactive immune system 🤔
The blood test was at 2.40pm.
My free T3 is 4.1pmol/L (normal range - 2.4-6pmol/L) and free T4 is 11.8pmol/L (normal range is 9-19pmol/L).
You’ll get good information here. Your free Ts are dreadful and I’m sorry you must feel horrible often!
I’m not in the UK, so others will share more relevant replies. But ultimately you’re heading towards thyroid hormone replacement (like Levothyroxine), but there’s lots of learning and navigating ahead for you : )
Welcome to the forum!!! You’re in the right place!
Thank you ✨ I feel dreadful, just not functioning cognitively and desperate to get back to work. Having to battle to get anywhere is an absolute nightmare. It's good to know that I'm not imagining it though 💯
You are NOT in any way imagining it. Those free Ts are enough to make anyone feel like that. And those who come through this forum has had some shade of that. Because just about every single cell and process in your body needs optimal free t4 and free t3 to function.
Your thyroid is the engine of your body. It controls metabolism- which is how your body converts food into energy. Slow metabolism means no energy. And feeling cold. Your brain needs thyroid hormone to think and clear the brain fog. Your joints and muscles and heart and everything else! Head to toe.
And fighting with the NHS is all too common. Again, I’m not in the UK but you can peruse the posts on this forum for a thousand stories about how thyroid people navigate the NHS. Unfortunately your fight is far too common. That’s why there are more than 140,000 members here.
Others will be along and share more insight and tips for next steps for you.
And others have better more detailed answers than I do - but in the meantime, do you have any results for:
Vitamin b12
Folate
Vitamin D3
Ferritin
These 4 in particular need to be optimal (not just “in range” 😁) for your body to make the best use of the thyroid hormones you do have.
Many people test private here like through Medichecks or similar.
Even while you fight with your doctor to get proper diagnosis and treatment for your thyroid, you could begin supplementing to optimize those vitamins.
Never supplement without testing first. Avoid multi vitamins. You need the right amounts of the right things and it’s all very individual and personal.
I will say that I too have pondered what I would trade in exchange! The brain fog is a prison!
And don’t worry about slow or short responses. We’re not going anywhere, and you can reply whenever you have the energy.
- B12 - was low end for ages at 182 ng/L in 2021 - now >128 pmol/L
The B12…. I will assume that’s serum b12 and not active b12? If the range for that one goes up to the 500’s or more, then most people would feel terrible with that one result alone. Low b12 has serious symptoms.
As long as this is serum b12, then you should aim for top of range - at least 500, but even upwards if 8-900 is good.
- Serum folate:
5.9 ug/L - December 24 ( was 10.4ug/L in March 2024))
It’s recommended to take b12 for a couple weeks, then add a good b complex to bring your folate up and maintain.
I chose the BetterYou B12 spray and Thorne basic b complex (only twice a week.)
- vitamin D3 - 139 nmol/L (previously 27) - I take 8000IU most days
Well done tackling your D! The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L.
So you are good! Just make sure you know how much you are taking to maintain that. I know many people here target 100 so you don’t want to go much higher . I’m not sure what “most days” means - but if it’s because you forget sometimes then you should keep forgetting : )
- Serum ferritin level:
86 ng/mL - range - (November 2022)
Not terrible but you need one more recent. Make sure to get a CRP-hs test when ever you get a ferritin test (either alone or as part of a full iron panel.)
It stands for C-Reactive Protein high sensitivity. And it measures inflammation- which when over a certain level can appear to increase your ferritin but it’s just a reaction to the inflammation so its not a true measure of iron status.
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No need to reply. It’s always drinking from a firehose but over time you will get on track towards advocating for yourself and feeling better.
We have all been there done that. It takes a little time but you’ll be on your way.
In the meantime, be kind to yourself. All of this can indeed be shocking, and exhausting. But you’re pretty low right now, only up from here 🤗
Thank you FallingInReverse ✨ I just felt so close to getting an answer to why I feel so pants and knew that a 'normal' result would floor me. I wouldn't mind as much if I was functioning reasonably well and in work. I can't see that it's all menopause related, as I'm 4 years post-menopausal.
- B12 - Had a look at my B12 level from March 2024 and it was - 'plasma vitamin B12 level of 555 (ng/L), which is approximately 412 picomoles per liter (pmol/L) - according to a quick Google search. This level is while taking the BetterYou B12 1,200ug oral spray.
- Folate - I've started taking 5mg folic acid ☺️ Will have a look to see if I can find some methyl folate 🤔
- B complex - I've also started taking this today and unsure if it's too much with the B12 spray and folic acid 🤔
- D3 - yay! At least something is in the right range 😃 Vitamin D3 dose is based on a video by Dr John Campbell, where they recommend 1,000iu for every 10kg of body weight.
Both your Frees are pretty low, with the FT3 higher than your FT4, which is often a sign of a failing thyroid. But if the blood draw was at 2.40 pm it would have been pretty low, so I don't think that's a good basis for suspecting Cental hypo.
I'm not sure fatigue is a symptom of an over-active immune system, but it's not about that. Fatigue is a symptom of hypo, which it's pretty clear you have. Doctors know nothing about symptoms, anyway.
I'm really surprised that your doctor knew what Seconday hypo was. Most of them have never heard of it!
She's been pretty good since then, but I feel like I'm back to square one with these results being classed as 'normal'. What is my next step? I can't imagine them agreeing to redo the bloods 😭
If test for PA is positive you will need B12 injections for life,
If test is negative, with extremely low B12 you may need B12 injections anyway
If GP doesn’t start you on B12 injections you will need daily supplements
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
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 can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
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) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
SlowDragon ✨ Thank you for the wealth of information ☺️
I have looked back over my results, as recommended by FallingInReverse ✨
- B12 - Had a look at my B12 level from March 2024 and it was - 'plasma vitamin B12 level of 555 (ng/L), which is approximately 412 picomoles per liter (pmol/L) - according to a quick Google search. This level is while taking the BetterYou B12 1,200ug oral spray.
- Folate - I've started taking 5mg folic acid ☺️ Will have a look to see if I can find some methyl folate 🤔
- B complex - I've also started taking this today and unsure if it's too much with the B12 spray and folic acid 🤔
I'm mostly vegetarian, with some eggs and chicken and ham once a week -ish.
I'll keep going back through your reply to make sure I've implemented it all
greygoose - apologies , I am really new to this and just starting to get my fight back after the recent blood test results. How do I interpret the T4 and T3 percentages? Is there any literature on that shows that 28% free T4 is insufficient for some people?
greygoose FallingInReverse SlowDragon I have been reading around my TSH and free T4 levels and the NICE guidelines on interpreting thyroid results mentions that Biotin can falsely raise T4 levels. I was prescribed this in a high dose multivitamin by my Nutritionist a few weeks prior to the T4 / T3 blood tests 🤔
I'm currently pulling together information on the reliability of 'normal ranges', optimal T4 ranges (Pituitary Foundation) and NICE guidelines for treatment of subclinical hypothyroidism to take along to my GP🤞🏼
Many thanks for any guidance / literature on normal ranges / optimal ranges and treating subclinical hypothyroidism 👌🏼
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
If taking a vitamin B complex ….In week before blood test, when you stop taking it, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
If you google 'euthyroid blood levels' I'm sure you'll come up with something.
Did you mean a 'multivitamin'? Or did you mean a B complex? Not the same thing. And multi-vits are not recommended on here.
Biotin and affect any and every blood test result if biotin is used in the analysis process, not just T4. And it can either raise them or decrease them, impossible to tell what it's going to do.
As to the 'reliability' of 'normal ranges', first of all you have to know what a range is. And what it isn't. Have a look at this article:
Thank you 😊 I usually avoid multivitamins, as I'm aware that the levels are not optimal. My nutritionist prescribed a high dose one after an elimination diet. I've started back on the BetterYou high dose B12 and am taking 5mg of folic acid daily. Really appreciate the wealth of guidance 💯 I'll re read and put into practice ☺️
If my nutritionist prescribed me a multivit she'd be my ex nutritionist! It demonstrates a complete lack of understanding you all these things work together. Also, folic acid is not the right form to take, you need methylfolate.
If I were you, I'd get a good methylate B complex to keep the Bs balanced, as they all work together. You can always take extra folate if necessary as helvella explains.
Nobody can know how much change, how fast, a particular dose of methylfolate (or folic acid) will make your folate level change. We are all different.
The standard dosage for methylfolate is 400 micrograms though higher dosages are available online.
Maybe just try taking that every day for a while. Then get re-tested. I think that would be a reasonable way of establishing whether you need more - if your level is only rising very slowly, take a higher dose. You can, of course, take two 400 microgram capsules/tablets if you think you need a higher dose. Or alternate two and one for a small increase.
Over on the Pernicious Anaemia Society forum, lots of members have posted about taking 5 milligram folic acid daily. Some sources insist that everyone taking B12 injections absolutely MUST take high dose folic acid.
But a fair number have said that they did not feel well taking so much. Especially continuously - every day - over long periods such as months or years.
There are concerns over unmetabolised folic acid building up. On low doses, the typical 200 or 400 micrograms often suggested in pregnancy, not nearly such an issue.
However, we are all different. Some tolerate it much better than others.
Note that the principle reason for 5 milligrams being prescribed is that, for most purposes, no other dose can be prescribed in the UK. Not that it is the ideal dose for everyone.
I would add that starting HRT meant I needed to increase my thyroid meds, so as you did that recently, it may just have highlighted your existing untreated thyroid problem
Thank you ✨ I'm just at 2 weeks of HRT. My free T4 was 10.5pmol/L back in 2003 and is now 11.8pmol/L. Could the HRT have caused the increase, or is it negligible?
2003 is too long ago to tell what your levels could have been recently before starting HRT. It won't have been static for those 20 years. As you say, it is not a huge change either.
I just thought as you mentioned starting HRT and beginning to feel unwell, it may have affected your thyroid levels a bit.
If you have not tested between 2003 and now, there is a good chance your thyroid has not been treated properly for years and adding the HRT has just made it a bit worse.
My T4 was retested last week and was 11.8pmol/L (range - 9-23pmol/L). I have just read that Biotin can falsely raise the T4 and I was prescribed a multivitamin with100ug of Biotin in it, so wonder if this could be masking an out of range T4 🤔
Right now you can look for the forest through the trees, and also read the specific actions from the replies here.
It’s absolutely true biotin can interfere with thyroid test results. They actually use biotin itself in the lab test chemistry, so when it’s in the blood sample it just gets all muddied up.
That being said - we look at symptoms + blood tests. And one day you’ll look back at this and realize with your symptoms, whether the ft4 is 9, 10, 11 or 12 - they are all too low.
That being said - you are autoimmune hypothyroid, which will give you confidence that you are on a one way street with having too little thyroid hormones coming out of your thyroid. Some people have low free Ts but no antibodies. They might question - Will this resolve on its own over time, can I “cure” it with diet and lifestyle. When it’s autoimmune - we need to “control” it with diet and lifestyle, sure, but yiu can’t “cure” it. Your thyroid wont provide sufficient thyroid hormones over time, and your free Ts are already horrible (really low!) you can proceed thoughtfully and cautiously - but with confidence.
You do need to get a baseline for sure with the right protocols. And you need to follow a consistent protocol every time. As close to 9 as possible. Fasting. Dose and supplement gaps incl for biotin.
These are my dashboard every 8 weeks: TSH, ft4, ft3 and key vitamins b12, folate, ferritin, d3.
Testing TPO and TG antibodies to see if it’s autoimmune. Once an ab test is positive once, that’s confirmation. Then Abs fluctuate all the time. So you know this. You could retest ABs regularly if you want. Many people try to have the right diet and gut health etc to reduce antibodies. There is some science to that, but many people also don’t even think about it. For me - it’s on my long list, but in the beginning we look at the free Ts and vitamins as a priority.
Read and re-read your replies. Let it all settle in.
In the beginning, for me, I was trying to make sense of all the overwhelming details. I had a symptom tracker going back 8 years. Everything seemed like that carnival game whack-a-mole.
But if it’s hypothyroidism- it is true that a vast majority (sometimes “all “) is due to the low thyroid hormones. And therefore once you determine that, you then get on the track of those tests, and slowly slowly getting on thyroid hormone replacement. And over time - getting those free Ts up to whatever level is optimal for you individually magically knocks out symptom after symptom.
Within a few months once on Levo, many feel “better.” It took me a year or so for the brain fog to noticeably go away. Some say it takes 1-2 years to get on an optimal dose, but usually one feels “better” in a couple months. For many of us when we start it would be hard to feel worse!!!
Ps. A word on the importance of supplements. My 18 year old daughter has low free Ts, no anti bodies and TSH around 1-2… tons of the usual symptoms. So I am still monitoring her, might need Levo soon still figuring it out … BUT for the past two years I’ve optimized her vitamins and iron, and even without her free Ts improving, it made a world of difference.
Our bodies need optimal iron/ferritin, b12, folate and D for the thyroid hormones we have to work well.
Avoid multi vitamins because they either 1) have too little of what you need 2) things that may hinder our health and so it’s either bad for you OR in any case a total waste of money. Test, identify deficiencies, and supplement with precision.
Anyway.It’s a crazy experience - none of us are doctors.
Just want to encourage you to rely on this forum as an educational resource. Like a second opinion - while you become your own best health advocate, balancing out what you hear from the medical establishment. Gaining knowledge and confidence as you begin to make sense out of it all.
Thank you 😊 I usually avoid multivitamins, as I'm aware that the levels are not optimal. My nutritionist prescribed a high dose one after an elimination diet. I've started back on the BetterYou high dose B12 and am taking 5mg of folic acid daily. Really appreciate the wealth of guidance 💯 I'll re read and put into practice ☺️
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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 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
I'm mostly vegetarian, with some eggs and chicken and ham once a week -ish. I've been working with a Nutritionist for the past 3 months and I've done a low-fodmap, gluten and dairy free diet for 6 weeks, followed by some probiotics and l-glutamine. I do notice that I get some mild gut symptoms when I have gluten.
My Tissu transglutaminase IgA level - 5 March 2024 - 0.40 U/mL and 27 December 2024 - 0.50 U/mL. Is this the Coeliac test?
Definitely happy to try going gluten free if it will help ☺️
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