Can anyone advise me on these results please - what they mean/what to do next. I have included some history, but I am not feeling well at the moment so apologise if it is all over the place and a bit patchy. I have just rejoined the forum so have had lots of useful information about testing and vitamins etc and will fill in my profile another time if that is ok.
I am 54 and was diagnosed with CFS/Me in 2019. I think I have had hypothyroidism symptoms for a number of years and my past tsh results show a steady rise over the years, but has only just gone out of range recently).
History:
I started levothyroxine (teva) 23rd May 2023 (Afternoon blood test, non fasting, TSH = 4.8, T4 = 9 TPO “normal” ….sorry, can’t remember the ranges). At the time the Gp said the results were borderline, but said I could start a trial of thyroxine. Started on 50mcg and after a rough few weeks, I really started to feel better - constipation resolved, not feeling as cold, dry skin better, not as many raynaud’s attacks, tinnitus gone.
Tested again 8 weeks later and TSH was 1.7 and t4 11. (fasting sample, did not take my morning thyroxine until after the test, sample taken 0830am). All seemed to be going well and. I was Advised by clinical pharmacist who did my annual medication review to carry on with 50mcg and they would test me again in a year. She ordered further tests for vit d, b12, iron and ferritin and gave me the results over the phone and they were all towards the upper end of the ranges.
Past couple of weeks, I’ve felt unwell again (sweating loads, dizziness, heart flutters) and felt as if some “old” symptoms were starting to creep back in again. Plus I continue to have some aching joints and muscles too, but wasn’t sure if it was all in my imagination so I did a medichecks test to see what was happening.
(Fasting sample, did not take my am thyroxine until after the test, taken at 0830am, not on biotin)
Results are:
TSH 2.83 (0.27 - 4.2)
Free T3 3.5 (3.1 - 6.8)
Free thyroxine 14.3 (12 - 22)
TPO 12.5 ( 0-34)
Thyroglobulin 262 (0-115)
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JoJoloveschocolate
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TSH was 1.7 and t4 11. (fasting sample, did not take my morning thyroxine until after the test, sample taken 0830am). All seemed to be going well and. I was Advised by clinical pharmacist who did my annual medication review to carry on with 50mcg and they would test me again in a year.
This was completely incorrect
Ft4 very low
You were ready for next dose increase in levothyroxine
Or possibly because of low TSH retest again in 6-8 weeks…..but definitely not a year
TSH 2.83 (0.27 - 4.2)
Free T3 3.5 (3.1 - 6.8)
Free thyroxine 14.3 (12 - 22)
TPO 12.5 ( 0-34)
Thyroglobulin 262 (0-115)
So you are now definitely ready for next increase in levothyroxine to 75mcg daily
Make an appointment with GP
Email these results to them before appointment
FT4: 14.3 pmol/l (Range 12 - 22)
Ft4 only 23.00% through range
FT3: 3.5 pmol/l (Range 3.1 - 6.8)
Ft3 only 10.81% through range
Most people when adequately treated will have Ft4 and Ft3 at least 60-70% through range
Retest again in another 6-8 weeks
Which brand of levothyroxine are you currently taking
Roughly how much do you weigh in kilo
guidelines on dose levothyroxine by weight
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 near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Thank you so much for your reply. I did think a year was too long to wait! I feel rough. I am on Teva brand. I weigh 87 kg!! I’m worried the gp will take offence that I laid for a private finger-prick blood test…but I will definitely get in touch tomorrow and email the results as you say. Sometimes I think I’m losing my mind with it all, doubting how I feel. Thank you!
Blimey!! I will definitely email the gp tomorrow and get the ball rolling hopefully on the next dose increase. Can you advise about the antibody results?
That is really helpful to know. Thank you. If it is Hashimoto’s then I feel like I might be right with my thoughts that it has been going on for a while. I haven’t got the results yet, but I do know that my tsh had been steadily rising over the years, but always within the specified range until now. I feel more like I’ve not been going mad or imagining things. x
I have sent the email this morning SlowDragon - polite, firm, concise, I think. Now chewing my nails off waiting for someone to ring up and tell me I don’t need more thyroxine! It’s a white-knuckle ride.
She ordered further tests for vit d, b12, iron and ferritin and gave me the results over the phone and they were all towards the upper end of the ranges.
I’m not taking any supplements. It’s like trying to get blood out of a stone getting the results off them. They wear me out. I’m going to email tomorrow so I will request copies. Thank you for your advice.
Be very surprised if vitamin levels are high if not on supplements
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
I’m on patient access and the nhs app but there are no results or medical history on there. I will ask about the enhanced access. That’s a a good idea to ring the receptionist then I can keep the email just about my results and not complicate it. Thank you. I appreciate your help and support. x
Hi there! No tests results for me either as they changed to NHS app from patient access! Computer says no 😯 after 3 phone calls to receptionist/ IT sorry not working properly! Good luck 🤞
If your surgery is linked to Patients know best ( I know its VERY ironic ) then you will get your results as soon as the GP does and won't have to fight with the receptionist !!
use these references if GP says no need to increase dose , some are taken from GP update sources , one was written specifically for GP's by Specialist Registrars in Endocrinology and Cardiology , so there should be no argument about their validity, they all recommend GP 's keep TSH between 0.4/0.5 and 2/2.5 at the highest, for all patients on levo : healthunlocked.com/thyroidu.... -list-of-references-recommending-gps-keep-tsh-lower-in-range
This post explains why getting TSH 'anywhere in range' is not good enough for some patients : healthunlocked.com/thyroidu... the-shoe-size-analogy.
is is very common to feel some improvement for a few weeks on 50mcg , which then tails off again ,..... be prepared the same may happen on next dose up too , but usually the improvement lasts longer and the 'worse again' is less bad... until hopefully once right dose is found , the improvement remains more constant.
Oh thank you so much for the reference link! I definitely think my tsh needs to be closer to 1 or even a bit lower. I’m so glad you said that about the next dose “the worse again is less bad”. I really really need something to go to plan for a change. I feel sure I’ve had hypothyroidism for at least 10 years and have been landed with a diagnosis of CFS/ME that now clouds everything with my health - basically everything I feel gets blamed on that!
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).
TSH should be under 2 as an absolute maximum when on levothyroxine
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
Wow! Thank you so much. I can’t understand why it can be such hard work with G.ps re:thyroid when there is so much info available. It blows my mind. Then again….I’ve had many a heated discussion with a couple of gps about hrt, but that’s another story!
Oof! It’s awful. I feel sorry for anyone who has been through/is going through this. I’ve had a little taste of what it might be like to feel well after a few weeks on 50mcg, so I now know it is possible for me and I don’t have to live my life feeling knackered and totally switched off! I’m gonna fight back (literally couldn’t fight my way out of a wet paper bag, but you know what I mean 😆). Seriously, will be emailing tomorrow and will try to be strong and straight to the point. I’m dreading it but needs must.
Haha welcome to the syndrome club, I was diagnosed with Fibro approx 16 years ago, 13 years before my knackered thyroid basically threw in the towel. I've often wondered since if it was thyroid all along.
I was only saying earlier in another post today that I get extremely frustrated whenever I go to the doctor and whatever the issue is it gets blamed on Fibro. Who knew one condition could be responsible for whatever ails ya!
Omg!! You’ve just reminded me…I was diagnosed with fibro too, before the CFS! I completely forgot about that. That’s how addled my brain is now. I feel for you and know exactly how it feels for everything to get lumped under one heading. xx
Just had a quick flick through….very, very interesting. Will have a proper read tomorrow. I wish I had known all this a while ago. I just went along with what the gp was telling me…and did as I was told…I feel like I can’t trust them these days. Thanks for all the info and help.
I was diagnosed with ME/CFS in January also . But I am convinced it’s just that I haven’t got my thyroid medication at the right balance yet. I started Levo 2 and half years ago and am now experimenting with added T3. I feel much better that before medication but be prepared for a bit of a rollercoaster. I read here every morning to pick up bits of advice. You will have to learn and then advocate for yourself.
That’s exactly how I feel too SarahJane. I feel like I’ve had hypothyroid symptoms for years. I lost the outer edges of my eyebrows years ago which I believe is also a symptom. My hair went grey when I was in my early twenties and I often wonder if this too was a sign. I also wonder if I have been misdiagnosed or if I actually do now have long term chronic fatigue from years of being undiagnosed and untreated. I hope you get your levels sorted soon. It has shocked me quite a bit to be honest to find out about how hard it can be to get it all diagnosed, treated and under control. I thought the thyroxine would be the answer straight away instead of all this malarkey. As the saying goes though, knowledge is power. I’m getting a handle on it all, slowly.
If you google LowT3 and MECFS it will come up. I sent the link to my consultant but didn’t ever get a response 🤷♀️too focused on CBT/prioritising/planning/pacing. That’s all I got from my 6 week course on fatigue management. Stating the bleeding obvious really 🤷♀️
Thank you, I will look it up. I had to travel 50 miles to do a very patronising 6 week course on fatigue management…it was like being treated like naughty children at school. The journey put me in bed for two days after! Isn’t it awful
That is exactly what happened to me. After every session practically bed bound for 2 days. Oh the irony 🤣. Also felt like everyone was competing to claim the most exhausted 🥱.
Yep, the C.F.S service sessions literally causing more fatigue…should be banned! I’d rather be whipped with nettles through the streets than go there again! 🤣 Some of the people on my course had done it a few times before and were answering all the questions like a load of school swots! 🤣
🤣I had the ones with all the highlighter pens and taking notes…. We had printed out workbooks so could not understand why they needed extra notes 🤷♀️. And if the course is so good why did people need to do it again🤣
That’s what I thought! It was mad. Really long journey on a crazy busy motorway, long walk from the car park, long walk through the corridors to get to the right ward. I was supposed to have one to one counselling at the end, but that never materialised. Had one quick follow up phonecall and not heard from them since…thankfully 🤣
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good morning, just reading your last comment ‘ hair went gray in twenties’ .A definite sign of low B12 along with Fibro cfs diagnosis. I suggest you pop over to the b12 forum and read through a few of the stories. All connected autoimmune symptoms. Ain’t life wonderful.
Omg! Thank you for letting me know that info, Carlosdoug. I just recently had a b12 test and they said it was normal! I need to get my hands on those results and find out what their version of “normal” actually is…they probably mean it just about managed to limp over the lowest part of the range and flop one flailing limb just over the line into the “normal” side!
Whaaat!!?? Erm…I think…when they gave me the results that were “normal” and supposedly towards the “higher end” she said the level something like 200andsomething. Before I go for my sept blood test I’ll ask for printouts and say I’ll pick them up when I go in for my blood tests.Definitely.
I just messaged the practice via their new system and asked for all my latest test results to be emailed to me…my phone rang…it was the sugery…I picked up and there was no answer when I said hello. The message I sent has now been marked “completed.” I’ll wait a while to see if an email arrives saying they have replied on their secure message system…not holding my breath though.
Jojoloveschocolate yes you are very close to the truth. One degree over the line, normal. Do check into Pernicious anemia here. Marvellous information and great knowledge and assistance.
UPDATE: (not sure if this is the right place to post an update) Just had a really nasty, severe triage nurse ring me to tell me they can’t take note of the medichecks fingerprick test, they won’t be putting my thyroxine up as tsh of 2.83 is normal anyway and my last nhs test showed 1.7 which is also well within range. She said I couldn’t speak to the gp because she was on holiday and turned really abrupt and harsh when i even asked if i could get an actual gp opinion. I mentioned the guidelines that say thyroxine titrated on weight and also that even if it says “normal” I don’t feel well again. She said I had to have a retest in October….after me getting a bit angry and snappy myself she booked me in for early september for a blood test. Made a point of telling me TPO was normal even though I said the TG ab test from medichecks was positive. She said it probably wasn’t accurate. Sitting here very upset, shaking and quietly fuming now….And I bet she’s written in my notes that I started raising my voice! I didn’t mean to but she wasn’t listening at all to how I physically felt. I feel terrible that I got a bit angry….on the upside - at least I didn’t swear!
Hehe! I very nearly dropped a swear bomb! She was so nasty. All she had to do was say - no problem, I hear you, let’s run another blood test now and see what’s going on. That’s actually what I wrote in my email anyway - saying wasn’t feeling well again and asking if I needed another blood test to confirm these finger-prick results that actually, i found later, also had a medichecks GP comment on saying the thyroxine dose was too low and to discuss with gp.Arrrrgggghhhhhhh! . I feel all wound up now after talking to little miss knowitall. But at least they will do another test to check in early September instead of October, means I only have to wait another couple of weeks feeling like crap.
she wasn’t listening at all to how I physically felt
Some people are not good at their job. You can ask to see your notes and have a letter added to counter anything written there.
You have a right to ask to speak to a GP.
And ask for a second opinion. Or a third. I've had to ask different gps at my surgery. That's enough to make me want to drop the swear 💣.
I too have a 'diagnosis' of 'We don't know what's wrong with you' (Cfs).
You definitely need your results for the vitamins etc.so people here can help. It's the first stage from which you can build back to health. Or rather, sub optimal levels of co-factors are the first thing you need to rule out. Then you move the monocle on to thyroid (and possibly adrenals) and give those a good stare.
I ring up and ask for a print out. I have practised staying schtum while the receptionist reacts badly. Deep breathing! The power of staying silent.
I'm always asking these days. I still get quizzical looks if I'm there in person. What a load of nonsense.😠
It sounds like a nurse got involved and didn't know what to do when challenged. One told me yesterday that my (total) b12 was fine. When I explained about the active b12 being a better indicator of levels, her eyes glazed over.
Thank you so much for saying that! You’ve made me feel better. She just made me feel awful for questioning her and asking to speak to a gp and kept harping on about test results from last time “normalnormalnormalnormalnormalallnormalbutnormalyesbutnormalbutbutbutNORMALLLNORMALLLL!!!!” like a robot spinning around, wires popping out everywhere and blowing a bloody gasket!!
The power of staying silent…yes you’re right…and breathing. You made me smile - “moving the monocle….and giving a good stare” Love that!
You do need to get in the zone for dealing with the 'normal' brigade.... don't worry it actually starts to become quite fun with experience.... and you'll get plenty of that 🤗
congratulations JoJo, your emailing skills are clearly very effective ..... most of us have to wait several days to get told off and shouted at ....
i know how wobbly it makes you feel, getting put through the wringer like that , but it's usually a sign that you are on the right track (as Corporal Jones would say ~ " they don't like it up em")
while you're waiting for the next blood test , find out the fT4 range .... that last NHS result of 11 is quite likely to be under range , (or at least 'very low' in range) , and if it is , then that's the perfect counter argument to someone saying 'your TSH is in range'
(i can;t say for sure that its low because there is one range in use that is [7.9-14], but many are [12-22] , or [11-23] or [9 -23]
pop into reception , wait till there isn't a queue and confidently ask receptionist for a printout of the thyroid results and lab ranges from that date ...... keep smiling... but don't leave the counter without the range. (depending on what obstacles they chuck at you , you may need to say 'that's ok , i 'll come back in day or so to pick it up' .. but the range WILL be in thier system somewhere and there's no reason you can't have it)
They don't have any effective methods of dealing with charming confident people who just don't go away ....
Hehe! Thank you tattybogle. Actually, just now, I have an inkling from the dark recesses of my mind somewhere that the lower range might be the 7. something. My first test showed a t4 of 9 and then I started the thyroxine and felt a bit better when the tsh got to 1.7 and t4 got to 11. Do you think the latest medichecks result of t4 14.2 (12-22) seems a bit low?
I think you.. like many of us will find that an adequate amount of thyroid hormones will alleviate your CFS remarkably well... you are certainly running on low octane fuel hence no va va vroom
Eeyore…I think you’re totally spot-on there! I feel in my heart that now that thyroid has been the main problem all along. I’ve also had a severe perimenopause and have recently read that hypothyroid can make perimenopause much worse. Love that picture…that was me this morning…until nurse bumble threw me down “the long thin winding stairway without any bannister…” x
Yes, that all seems under control. I’m on patches and pessaries and (touch wood) all my ridiculous hot flushes, night sweats, and atrophy all ok for now.
Well done, if you find things need adjusting the body identical gel or spray are really useful as you have control over the dosing.... you need to tweak a bit sometimes to balance with your thyroid dosing
Thank you for the advice. I tend not to mention it to the gp much as they start saying daft things like -“ oh, i see you’re on patches and pessaries…you can’t be on both you know….I’ll have to take you off the pessaries!”
Oh really….is that so? Well, here’s the latest research and guidance and views on that *lifts all the printouts onto the desk with a forklift truck….
How awful that someone in the “care” world has made you feel like that. It can be so damaging to confidence and sense of reassurance that we’re in good hands. I’m sorry
I’m glad you’ve updated us. You’ll get lots of support, encouragement and good advice here so try not to be daunted and put off by your experience today. Yes, you’ll come across it again because there are many in the profession who behave like that but there are equally as many who do a good job, or try to
Unfortunately, thyroid disease is woefully misunderstood by a good number of medics and it’s alarming and frightening how many but you have this forum now and you can gradually learn the ropes for dealing with the professionals, gain an incredible amount of knowledge from the members and admins and grow in confidence. It may not seem so now after your dealings with your nurse “friend” but you will be able to advocate better for yourself in the future. You’ll look back one day and be amazed at how far you’ve come and how much you know
Thank you so much for your reply, Noelnoel. You’re so right - it has upset me. Funny thing is, the gp who put me on thyroxine had no issues about starting me on it. She actually offered me the trial without me asking and was really understanding when I told her I’d been diagnosed with C.F.S and it felt like symptoms were piling up on top of symptoms. She was really lovely to me. I think if I could have got past the gatekeeper today it may well have been a different outcome. On the upside, I don’t have to wait a year, or even until October for my next blood test. I’m having it early September then it’ll be…ding ding! Round Two… I just wish I could fast-forward to a time when it’s all settled and perhaps feeling better.
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