Hi π Please can anyone tell me if they see anything 'abnormal' or concerning about my below latest Blood results from 01/05/24? My GP Surgery says that apart from my TSH result, they're all 'normal'. Background: I am Hypo (Hashimotos) for 13 years. Late diagnosis & undertreated the entire time - and sadly I have since had a formal diagnosis of ME/CFS, and been predominantly housebound and bedbound these past 5 years. Been on T4 Levo the entire 13 yrs and felt awful on it alone. Introduced a tiny dose of T3 Liothyronine in 2021 (20mg) & felt no difference. But for the last 12m I've been on a proper daily dose of T3 Liothyronine I.e from 60mg to the current 80mg - and I do feel an improvement in my symptoms on T3, but remain anything but "normal" - and developing Chronic Fatigue after Hypo has left me with lots of other physical & neurological problems. I am still taking 100mg T4/Levothyroxine daily. It may be related that when I was 4yrs old I had life threatening Mumps with Encephalitis. My mother said I was never the same after that. Maybe that was the start of my Endo health problems. I don't know about that, but I do know that I've never felt "well" since my Son was born in 6/2004 by Emergency C-Section with general anaesthetic. Maybe I picked up an infection in theatre. I will never know will I. Nb. My TSH is always surpressed (on T4 only too), and my Endo says it's because I have a genetic Thyroid fault (1 parent) which is at cellular level, as evidenced by taking the DIO2 Test in 2022. Anyway, below are the results I mentioned from 01/05/24:
1. Serum Free T4 = 7.9 pmol/L
Range (R) = 7.0-17.0 pmol/L
Nb. My 2023 result was 26 pmol/L.
2. Serum total 25 - OH
Vit D = 124.3
R 50.1-200 nmol/L
3. TSH Serum = 0.01 mu/L
Range 0.38-5.33 mu/L
4. Serum Ferritin = 80 ugl
Range 80-240 ug/l
GP says my result is "normal."
Nb. My 2023 result was 88ugl
5. B12 & Folate (MCHT):
β’ B12 = 364 ng/L
Range 145-910 ng/L
Nb. My last result in 2023 was 614 ng/L so it's gone down.
β’ Serum Folate = 9.3 ug/L
Range >2.9 ug/L
Please note I'm currently taking no vitamins or Supplements due to unaffordability. Between 2021 & Jan 2024 I was taking big daily doses of VitD, Vit C and others. I was also self injecting B12 on a bi weekly basis after being diagnosed with Pernicious anemia in Jan 2021. I stopped that in 2023 due to unaffordability. Many thanks for any advice π π With my still very compromised energy levels, I guess I am also wondering if I could/should try a higher T3 dose than 80mg daily? Thank you π»
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Hi, thanks. The Endo clearly instructed the GP in writing in December 2023 to test my FT3 but they have not. Idiots. The GP agreed. We all know why they've not. Fast forward to 01/05/24, and I even showed the Nurse my Endo letter before she took bloods which said what required testing. She went off and checked out with Duty GP, and it was probably them who said do not test FT3. Livid π She returned saying all ok and will be taken, but that was a lie. I cannot afford private testing anymore. I took my last dose of Levothyroxine the day before the test, in the morning as always, first thing. You ask why they're not prescribing B12 injections....sorry but LOL .....I was offered one injection A QUARTER after a dosing load over 7 days in 2021! I was in a better financial position then, and paid for B12 and self-injected bi weekly. Honestly, I did not feel any better, but that was probably bc my Hypo was still severely undertreated - and I was only trying a tiny dose of T3 from sometime in 2021 (20mg) and only for a year, and with no improvement in my symptoms atall. I was still taking Levothyroxine throughout. The T3 prescribing Functional Medicine Dr (private) then promptly stopped T3 because I "wasn't responding". As opposed to increasing my dose to see if that made a difference. That would be too logical ofcourse π¬π¬π¬ On the subject of B12, and as you probably know, GPs do not want to recognise any results within their Range (however low) as indicating a problem. The GP at the time of my loading dose in 2021 never ever followed up with me afterwards about their pathetic quarterly offering. And as I said, by then I was housebound and bedbound on a daily basis, so I could not get there even if I wanted to. Thanks for all the links which I'll look at. Thank you for replying π
Thank you for your reply. Sorry but in my case the higher dose of aT3 does definitely help me. I can get out of bed now. No, I'm not cured of 'Chronic Fatigue', and I still have all the symptoms of ME/CFS (such as that diagnosis is, which is most probably, in my case, due to the long term undertreatment & failure to manage my Hypo by NHS). I felt nothing on the lower dose of T3. I understand that for many this would be fine, and that's great, but for me it was nowhere near enough. I have a genetic problem with my Thyroid function, and it is Cellular level. All checked out and verified by Endo. My GP has failed to follow their basic instructions to test my Serum FT3, because they do not want to test it. I literally said to the Nurse, "is the full list on my Endos letter being tested like the GP agreed to do two months ago?" She said yes, but lied. Furious at what we have to continuously put up with from these useless GPs. I will take up the fight for B12 injections situation when I have sorted the FT3 test out. As you can see, my B12 result is now sitting in the range so they will not want to offer injections to me, and one a quarter is no good. It is for people without any deficiency but not for people with genuine health reasons why B12 is relatively low in their range. So tired of this fight π Thank you again for taking to time to reply π»
GPs literally cannot request t3. Even if they ask it wonβt be given.
Itβs imperative you know the number on this as youβre taking a massive amount of lio. Howeverβ¦
For me, my lio and Levo numbers go right down until I get my b12 and folate up. My bet is that once you get your b12 and folate etc high in range you will need far far less thyroid drugs.
Thanks for your reply π GP agreed to test T3 in advance but on the day it didn't happen & only just realised. Another fight to have on Tues when they reopen.
I know my surgery are unable to request T3 blood test as it is not available on there system, a gp showed my their screen once to show it wasn't available. Even when a gp had physically wrote on bloods request from the lab still didn't do ft3. Also my surgery can only state I'm on thyroxine on bloods form. They have no way of stating I'm on T3 only
I think both of these apply to a lot of surgery's, but I could be wrong.
I do find though if your tsh is suppressed and ft4 below range then lab will do ft3 as an investigation I imagine.
Mine always get done now as my ft4 is virtually nothing being on T3 only.
Just saying as gp could likely think ft3 will automatically be included when they request thyroid bloods
Thanks again. The GP knew why it was needed because she'd seen the Endos letter 2 months ago, and agreed to test everything Endo required. However, as you say, the Labs typically ignore bc they think they are God. Interestingly I did (via same Endo) ask for T3 to be checked in May 2023 at my previous 'shockingly bad' GP (i.e 1/10), and that happened.... so it is clearly possible. The 1 point is only given because they got that right!!! I truly despair at the treatment our community get. Thanks again π»
Yes endos can request it no problem but gp's can't. Likely will depend on what icb you come under I imagine. Had your ft4 been under range along with suppressed tsh the lab might automatically tested.
I've had same with a gp's saying yes it will be tested but they get overruled by lab.
Perhaps do private bloods if possible. I personally use medichecks but Randox health finger prick is Β£29 for tsh, ft4, ft3 and antibodies.
sadly I have since had a formal diagnosis of ME/CFS
I somehow doubt that. That is a 'get-rid-of-the-patient-as-soon-as-possible-because-we-don't-know-what's-wrong-with-her' 'diagnosis'. These are syndromes, anyway, you can't diagnose someone with a syndrome. What you have, from what I can gather, is poorly treated hypo, un-treated PA and other nutritional deficiencies.
Introduced a tiny dose of T3 Liothyronine in 2021 (20mg) & felt no difference.
20 mcg (NOT mg) is not a tiny dose of T3, and it's much too high to start on. The usual starter dose is 5 mcg, increasing by not more than 5 mcg every two weeks.
But for the last 12m I've been on a proper daily dose of T3 Liothyronine I.e from 60mg to the current 80mg
On the other hand, 80 mcg is quite a high dose - especially with 100 mcg levo on top.
But we don't have an FT3 blood test result to see how you're doing on that. It could very well be that your FT3 is much too high, and it's that that is causing the chronic fatigue, and other symptoms. Too much is as bad as too little. We really need to see an FT3 result.
How frequently, and by how much, did you increase to get to this dose?
I've never felt "well" since my Son was born in 6/2004 by Emergency C-Section with general anaesthetic.
That is the start of Hashi's for many, many women, whether it's a C-Section or a normal birth. The hormones get all upset during pregnancy and Hashi's is often the result.
That's not to say that you weren't already hypo due to your Mumps and Encephalitis. You could well have been. But it's very possible that the pregnancy/birth was the cause of the autoimmune involvement.
Whatever the cause, there's not much you can do about it now, except optimise your current treatment.
Serum Free T4 7.9 pmol/L (7.0-17.0)
FT4 is low due to high dose of T3. Whether or not this is a problem remains to be seen.
TSH 0.01 mu/L (0.38-5.33)
Irrelevant and to be expected.
Your vit D is OK, but could be higher.
Ferritin 80 ugl (80-240)
GP says my result is "normal."
Your GP is a donkey, but that's only to be expected, too, because they know nothing about nutrition and don't understand how to interpret blood test results - they don't do either in med school. You would have thought that logic would tell you that with a range that vast, the results couldn't possibly be 'normal' all the way through. But I've come to the conclusion that you can only become a doctor is you have absolutely no sense of logic!
Insist on a full iron panel. It really, really isn't surprising you have chronic fatigue with a ferritin that low. Something needs to be done about it. And, you need to know what your serum iron is.
B12 364 ng/L (145-910)
Too low. Should be at least over 550.
However are you sure you have PA? Whilst that result is too low, it doesn't look low enough to constitute PA - but what do I know!
Serum Folate 9.3 ug/L >2.9 ug/L
Too low. Should be at least double figures.
I am also wondering if I could/should try a higher T3 dose than 80mg daily?
Absolutely not. At any rate, not until you've had your FT3 tested, and sorted out your nutritional deficiencies. It won't help much whilst your nutrient levels are so low.
Many thanks for your reply π As said to someone else I felt nothing on 20mg T3. I can get out of bed on 80mg. It helps me massively. Am I recovered from Chronic Fatigue, "No". But I am seemingly going in the right direction on T3, although your comments on my various results are a very helpful steer as to what to look at from here. My last Serum Free T3 result from 26/5/23 was 4.2 pmol/L (Range 3.5-6.5 pmol/L), and I had stopped taking T3 atleast 6m before then due to unaffordability. My Endo is not a quack and knows his stuff. He agrees with you that my situation is due to late Hypo diagnosis & severe undertreatment for 13 years, and he means T3 not T4. When I finally get my GP to test my Serum Free T3 I will post it here!!! Wish me luck π π Thank you again for replying π
Hi, just re the B12/PA, the OP was self injecting twice weekly until some time in 2023 and serum was still only 614 then. It should have been much higher. It has dropped quite far now that injections have stopped but will still be reflecting the previously injected B12. Unfortunately you can have a B12 deficiency (PA or not) at any serum level and symptoms do not really correlate with serum anyway. Depends where the problem lies. My serum was at top of range after very high oral supplementation over many years but I am still getting benefit from injections that I wasn't from the oral (or sublingual, or liquids or patches) although they (hopefully) worked enough to slow down progression I still got worse, rather than healed. Cheers
Hi, and thanks for replying. If you see my replies to others, I am far better on the higher dose of T3. Yes, I still suffer badly with Chronic Fatigue, but I can get out of bed now and walk further than I could on no T3 or on 20mg T3 which I felt no benefit from whatsoever. I was on that dose taken in 5mg doses 4x daily for atleast 12 months. Everyone is different. I need more. Thanks for taking to time to reply π»
Please note I'm currently taking no vitamins or Supplements due to unaffordability. Between 2021 & Jan 2024 I was taking big daily doses of VitD, Vit C and others. I was also self injecting B12 on a bi weekly basis after being diagnosed with Pernicious anemia in Jan 2021. I stopped that in 2023 due to unaffordability.
Just to say I was saddened by this - our bodies need what they need, after all - and to add have you tried Dolphin Fitness? Link hereπ
I've been ordering from them for a few years now (started off with Manuka Honey, which I get at a snip to anywhere else) and more recently, having seen about the need to work on core vitamins on the forum since I joined a couple of years ago, started looking at how their prices compare, which are very favourable. e.g. I recently got the BetterYou D3000+K2 Vitamin D + K2 Oral Spray (6 x 12 ml) - which are often recommended on here - for Β£39.95 [for the 6 pack] with a BBE 11/2025 so, almost 2 years to go. I've also had a quick scan of their Vitamin B (just generally, not narrowed down to individual B vits) and they've certainly got a wide range that all show similar savings so, worth a look I hope?
I hope, too, with your being "predominantly housebound and bedbound these past 5 years" that you're on a high rate of PIP and if not, please, please apply and don't be put off by the process - there's lots of help to claim out there and feel free to pm me if you want more details.
Finally, also just wanted to send a virtual hug down the M62 from Scouseland - keep fighting there Rhian, you deserve to feel well and be able to Function (and say F&$Β£ their 'normal'!) ππ¦
Ah "thank you so much" from a fellow Celt! I will definitely look into your suggestions β€οΈπ΄σ §σ ’σ ³σ £σ ΄σ Ώπ΄σ §σ ’σ ·σ ¬σ ³σ Ώ Take care! π
Just to say I use Dolphin Fitness for some of my husband+my supplements+their product prices are v good. Trusting for your good success in getting well.
Have you ever been on t3 only? I'd be tempted to drop the t4 and trial t3 only. Split does which endo/gp will want but if that doesn't work then 1 single dose. Might need t4 to clear from system which can take up to 12 weeks. I had to be off thyroid meds till t4 cleared before t3 worked or I could tolerate it. All trial and error
Hi & many thanks for your reply π That is something I've wondered about but never tried. I always felt terrible on T4 only which was 2011-2021. And then i went on a 20mg dose of T3 for about 9-12 months (alongside T4) and felt no better. I stopped T3 and remained on T4 only, until 9 months ago when I resumed combo treatment on 60mg Liothyronine alongside my usual 100mg Levo. Because the Liothyronine was helping me energy wise + I lost some weight which I'd gained due to Hypo (and had never lost in 12 years of taking Levo only), my Endo increased my dose to 80mg daily. I am still needing to rest A LOT during the day, but I am definitely helped by the increased T3 dose. No idea what, if anything T4 does for me. So yeah, I would definitely consider your suggestion. I will mention when I next see Endo. How do you feel on T3 only? What were you like on T4? Do you have Chronic Fatigue. For me it was like an 'Energy tap' being turned off in 2018. The T3 does definitely help me physically. I am still struggling & have a long way to go, but I think it has been a godsend for me. Many thanks & hope to hear back about your experience π π
I can't take thyroxine in any form. Initially i did well on it and started to alleviate symptoms but had reaction to fillers from day one. Eventually had to stop as felt like I was taking poison and feeling dreadful on it.T3 been rocky journey even after 10 years still haven't alleviated symptoms but I can function as I don't suffer with chronic fatigue anymore.
If you decide on giving T3 only a trial. Do so before paying to see private Endo. If you are paying for T3 on private script then I'd ask for pm's to source Tiromel as I think that is the cheapest.
Stop t4 and split your T3 in 2 x 30mcg doses, morning and afternoon. I think it will take a few weeks for you to feel any difference from not taking t4 as stays in system up to 12 weeks. If you still don't feel great then I recommend stopping t3 till all t4 out of system.
I've had to do it 3 times over years and yes you won't be too good but if your feeling dreadful already you have nothing to lose. Some people can't take t4 and t3 together, me being one of them. T3 only is the last resort after trying everything else but you seem to not be getting any benefit from high dose combination of t4/t3 so perhaps time to try.
Hi there & thanks so much for your reply & extremely kind offer π I will send you a PM. But yes, I agree totally with your sentiments. I think we on here are so used to below standard treatment, and years of gaslighting & disbelief from GPs and NHS Endos in general (I know I am), that we typically cannot face the inevitable confrontation when we seek help for anything & even when we put the facts in front of their eyes in black & white. I have fought for 2 years to get & retain T3 on the NHS because I have an evidenced & indisputable 'Clinical Need'. I've had to raise a few formal complaints now at my last & current GP over them refusing to prescribe it - and when it has been prescribed, they've for example either left me with no meds over the Christmas holidays, to withdrawing it without any warning or explanation beyond the "We do not routinely prescribed T3" line which is utter BS. Like so many on here I've faced terrible rudeness & blatant lies - and even endured a painful Gynae procedure with a GP in November, which I'm still suffering from - and I'm not being paranoid when I say I believe it happened bc my name was blacklisted in that Practice as a troublemaker for politely & professionally standing up to their nonsense. All of this has been going on for me these past 20 years since I first had Hypo symptoms. Many thanks again for replying & your kindness. Take care π
if you have pernicious anaemia and neurological symptoms then you need b12 injections every other day with cofactors to heal your symptoms then you can start to spread out injections slowly but injections are for life to stay alive.. also did you have an iron panel done, inflammation can cause raised ferritin so this may not be a true indication of your iron stores
Thanks for your helpful reply π I've been battling to get the T3 for the past 4 years, and have pushed the B12 to one side but need to pick that up again. My Endo asked GP to test full blood count, urea, electrolytes, bone profile, vitamin D, B12, folate, ferritin and intrinsic factor antibody together with free T3, free T4 and TSH. My Folate result was in amongst my original post. Is that the only indicator of the Iron panel you mentioned? Thanks π»
Ferritin is iron stores not iron level as such, if you have low iron then your body canβt metabolise b12, coupled with having PA regardless of what your b12 level is you need b12 injections.. itβs not about b12 levels once on treatment itβs about healing the neurological damage occurred from being starved of b12
Hi, thanks for that info π My B12 result from 1/5/24 was 364 ng/L (Range 145-910 ng/L), so it is in range - and Lab says 'Normal' but i still have the same neurological symptoms in line with B12 deficiency. My last result in 2023 was 614 ng/L so it's gone down.
I have PA and neuro symptoms like balance issues, migraine and constant pins and needles in my hands and feet but I cant imagine my surgery supplying me with jabs every day, either from them or to do at home.
I get one every 2 months and thats only because I beat them down from 3 monthly. I'm seriously considering going down the self injecting route.
Me too. Such horrid symptoms, and I agree that self-injecting is the only way forward for people like us if one can afford it. Good luck with it all π
Thatβs what I had to do, itβs taken me 6 years to date of every other day injections to heal my symptoms.. I was very ill with my deficiency.. Iβve not looked back, I believe Iβd be severely disabled by now or dead..
You have had a great deal of well informed advice already regarding hypothyroidism and although I have been taking levothyroxine for 25 years plus do not feel able to add anything further regarding this as I am on a new pathway of information myself having found this fabulous group of friendly experts. However, I was "diagnosed" with ME/CFS back in early 1990's and completely agree with greygoose that as far as I am aware there is still no test for this and as there is little recognised treatment it allows doctors to do nothing.
As Maisa11 has commented I managed to get a B12 bloodtest 18 months ago (my first one ever in my 70's) and have pursued treatment myself for my now diagnosed Pernicious Anaemia, with help from folk on the Health Unblocked pernicious anaemia website. I have managed a very significant improvement in my health taking one step at a time, accepting helpful, friendly advice from this website and lowering my expectations in relation to professional medical input. Information and knowledge is power and probably your best route to better health. Good luck!
Hi π many thanks for your response and for sharing your story π I'm very sorry to hear you've had such a lot of health struggles too in your life. How do you feel on T4 levothyroxine after 25 yrs, and have you ever tried T3 or anything else? I felt appalling on T4 only but everyone is different. My Mother was late diagnosed with Hypo age 60, and has fully responded to T4 only treatment, thankfully for her. She cannot understand why I am different & my ill-health is a constant irriration and I am deemed to not push hard enough & be mentally unstable. Its very upsetting to still have to field provoking Qs & judgement from one's own family & friends, let alone still from the NHS. This happens even when I've shared my DIO2 result which evidences inefficient T4 to T3 conversion & clinical need for T3 treatment (as confirmed on genetic testing 5th April 2022). Do you still have Chronic Fatigue because of your Hypothyroidism, or is it better managed now? I'm glad your PA is now being managed and sounds like you've made a lot of progress so well done. As mentioned to another person on here, and whilst I still have all the symptoms of PA, based on my recent B12 result (as stated in my original post), my GP says I am 'normal' in that regard. It is a higher level than it was between 2016 - 2022. Yes, this community site is fantastic and we are so lucky to have eachothers back's as they say. Best Wishes π»
Lovely to hear from you. It is sometimes difficult for others to understand our health, particularly when they themselves seem to be able to improve their health so much more easily. Remember, life isn't fair, as I used to tell my kids! We are all different and respond differently to all treatments so keep your confidence high and believe in yourself and get to understand yourself and your health as well as possible. That can be a real challenge when we just want someone to understand. Perhaps stop trying to convince the doubters because it can become pretty distressing feeling that we are not being believed. I had exactly the same problem when colleagues did not believe I was ill when I first had my ME diagnosis and felt so terribly ill and had to stop work altogether. With hindsight I now believe my ME diagnosis was possibly hypothyroidism and B12 deficiency as well. The symptoms do seem to overlap.
I have only ever known T4 Levothyroxine treatment but am now looking to get an up to date set of bloods to assess and make decisions along with a new doctor if it looks as if I need T3 as well. I am generally much better than at my worst, thank you. I never had any understanding from the NHS, I am afraid, and now have a healthy skepticism about doctors. My progress with PA has been made in spite of not because of any medical input.
You need to start insisting upon full blood test results, along with reference ranges. "Your results are okay" really is a meaningless comment and occasionally untrue. You need specific numbers for all your blood tests but particularly your PA blood test results, including reference ranges, because these are very often misunderstood. You could post your PA results along with symptoms on the PA website for comments and advice. I have yet to come across any GP or Consultant who understands PA blood test results!!! Take care and best wishes.
Hi, unfortunately your GP does not know enough about B12 metabolism and has not taken into account that you were injecting until recently. Of course your serum B12 is higher than the bottom of the range. How low were you when diagnosed? Do you have a copy of your PA diagnosis? Presumably you had a positive Intrinsic Factor antibody test. If you don't have your own hard copies of results and diagnosis it would be good idea to get them and put somewhere safe as soon as possible. They have a habit of disappearing. You should not be retested once being treated although of course as treatment wasn't continued you should get fresh loading doses and then regular injections.
You may find this interesting re CFS, thyroid etc - some people respond better to different forms of B12 (and folate, although this doesn't mention that), and more frequent injections, depending on methylation polymorphisms. Again there are more relevant polymorphisms than are mentioned here but it gives you an idea. I found magnesium and methylfolate made a big difference to me, along with the B12, but we are all different.
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