I have been struggling since Nov 2021 with brain fog, fatigue, dreadful short term memory and awful bone/joint pain in shins/knees to the point I have to take pain killers which I hate.
I had my bloods done on 24/2/22 at 9.30am, fasting and last dose 12 hours prior (it may have been a bit longer because of brain fog). Was shocked that TSH has fallen off the bottom of chart.
TSH *0.10 (0.27-4.20)
T4 16.3 (10.5-22.0)
T3 No
I asked for T3 to be tested, as I always do, but Doctor said "oh no it's too expensive, we don't want to upset the lab". Also on results were the following which she didn't comment on:
RBC *5.12 (3.80-4.80)
Haemoglobin *15.1 (12-15)
Cholesterol 5.5 (3-5) She is too worried about this as LDL is 3 (0.00-3.00).
I was so surprised by these results I asked for repeat and had them done Friday 25/3/22 10am, fasting and no Levo for 12 hours.
TSH 0.10 (0.27-4.20)
Free T4 20.0 (10.5-22.0)
T3 No
She rang at 6pm yesterday to give me these results and wants to reduce my dosage. I refused saying T3 hadn't been done and I wouldn't be treated on TSH result alone. She agreed to contact the lab and asked for T3 only on the sample taken a week ago. I very much doubt lab is testing over the weekend so my sample will be 10 days old on Monday. Is this good practice and will it give reliable result?
Last year's results are:
TSH 3.90 (0.27-4.20)
Free T4 13.2 (10.5-22.0)
T3 1.21 (1.08-2.90)
I am 56, on HRT, patch 50mcg and Utrogestan 100mg taken in the morning. 100mg Eltroxin taken at night. I live in Ireland and am dependant on the public health service.
I have not been supplementing because of supply issues but have ordered Thorne B Complex, B 12 and Vitamin D.
So my questions are will that blood test result be reliable and where do I go from here?
Siobhan
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Galwayed
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Galwayed I can say that they were all symptoms that I had very badly and that kept me all but in bed for 2 years. The root of my problem was poor conversion as shown by TSH, ft4 and ft3 results from several blood tests. I am lucky to love in Scotland so was able to use this history of poor conversion data to convince an endo to prescribe T3 liothyronine. I had to be pushy though and prepare a case detailing results and interpretations of those results (thanks to this site for the education).
It has taken years of combo therapy and supplementation with b Complex and vit D for my body to re-adapt and I'm not completely symptom free but I no longer have your daily struggle.
Hi Lalatoot Yes! that was my first thought, bad conversion. So I guess I will have to start private testing myself, without the gaurentee the doctor will accept the results.But I really don't know why my TSH took such a nose dive.
And I was pleasently surprised my folate and ferritin levels were resonably OK without supplementing.
Serum Vit B12 573 (197-771)
Serum Folate 14.6 ( 3.9-26.9)
Serum Ferritin 131 (13-200)
2021 Results while taking B Complex, B12, Vit D
Serum B12 No
Serum Folate 16.7
Serum Ferritin 161
I am pretty resiliant and will self advocate for my health.
When I submitted a freedom of information request a few years ago the cost of a fT3 assay was 92p. Somewhere in the material for the NICE guidelines they quote various costs of around two to five pounds. So, it is not expensive (except when labs rip off patients for private tests).
Blood samples have been kept for over a decade for some research studies but the labs usually only keep samples for about a week, a quite reasonable approach. I’m having the same problem at the moment, I’ve contacted the hospital PALS haven’t heard back, chased them up and will no doubt have to push harder. I’m thinking of asking them to delete my TSH, fT4 results if they don’t do fT3 on the basis they are keeping inaccurate data. The sad fact is they only do their job properly when forced to.
EDITED … I got mixed up. They have run fT3 for me but not fT4 because my TSH is near zero and so they look for hyperthyroidism. My pituitary does not secrete enough TSH so I take 50 mcg levothyroxine plus 30 mcg liothyronine. This is why my fT3 is a little high giving the false impression that I am over treated . And so I need fT4 measured as it is around 7.0 and shows I am not hyper.
Hi jimh111 Yes the doctor did say they keep bloods for 7 days. In a way I hope they have dumped it and I will get private test done, a clean slate so to speak. I'm surprised that ft3 tests are so 'cheap' as that was the line I was given for non testing even though I pay €30 myself even though I have a medical card.I always request my tests by email since 2018 on advice here as these results were apparently "fine" when the doctor rang.
It's out of control here though. I saw a pair of shoes from established UK high street shop online for £45 then checked on their Irish site and they were €70 😱 and that's not all exchange rate.
Bloods test should be early morning, ideally before 9am and last dose 24 hours before test
If you normally take levothyroxine at bedtime
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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Hi SlowDragon I followed your advise re levo timing before testing but I think there was a gap of more than 12 hours before test on 24/2 as the brain fog was acute at the time. but the repeat test was definately timed perfectly and produced the same result.I think what I'll do is start supplementing when they arrived and do a private TSH/ft4/ft3 after say 6 weeks and see where I am.
But I'm wondering if I'm in a swing or may have had an inflammation to raise my RBC and Haemoglobin?
I'm asking as I had terrible bone and joint pain when I had a vitamin D deficiency. My arm muscles were also weak and I had no strength at all. The bone pain was mostly in my shins. Nearly forgot but I also had daily headaches.
Hi Hedgeree I did ask for Vitamin D to be tested but the nurse scoffed and said "No point, everyone is low, this is Ireland"! Have started 800iU Vitd3 daily but don't know if this is enough.Yes the shin pain is horrible.
SeasideSusie, always gives good advice regarding vitamin D supplementing and what to take alongside it.
It was some time ago now but I do remember how ill I felt and the bone pain was awful. Once I started supplementing the bone pain and headaches I was experiencing resolved fairly quickly.
Thank you Hedgeree I'm on a mission now and I really don't know where I would be without the fantastic help and knowledge on this site. Great news and very encouraging that supplements really helped you.
I have not been supplementing because of supply issues but have ordered Thorne B Complex, B 12 and Vitamin D.
Serum Vit B12 573 (197-771)
You don't need a separate B12 supplement with this result.
The unit of measurement for this test should be pg/ml or ng/L because it's the same reference range as my surgery.
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
So if your level is below 550pg/ml or ng/L then you'd take some B12 along with a B Complex until your level went over this limit. Once over this level you only need a B Complex as the amount of B12 in a good B Complex will still improve this level.
Do you know that you need Vit D? If you've not tested then you should before you take Vit D. This is because Vit D is fat soluble and any excess is stored in the body and can lead to toxicity. So you need to (a) if your level is low enough to need supplementing and (b) what dose you should supplement with if you do need to.
Also, when taking a D3 supplement we should also take Vit K2-MK7 and magnesium as important cofactors. This is because taking aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. (90-100mcg K2-MK7 is enough for up to 10,000iu D3.)
Magnesium is needed because it helps the body convert D3 into it's usable form.
Hi SeasideSusie Thanks for the comprehensive reply. I have never had Vitamin D tested but have just started 800iU VitD3, not sure if this is enough. I might drop those pills and go with the Better You spray to incorporate the K2-MK7. And I will leave out the B12.My calcium this time was 2.44 (2.15-2.55) up from 2.36 last year.
Needs to be taken 4 hours away from thyroid meds and evening is the best time to take magnesium as it is relaxing so you don't want to get tired in the day time. Also, Vit D needs t be taken 4 hours away from thyroid meds.
SeasideSusie OK I won't. I found Irish lab who can do TSH ft4 ft3 and they also do Vit D for €49. I will get those done as soon as I can afford it.I take my levo at night to keep it away from supplements, HRT and to be able to have breakfast before work. I haven't noticed any negative effect.
Oh SlowDragon I will research that! I found one lab which does TSH ft3 ft3 for €59 which I guess isn't too bad and the Sterling/Euro exchange rate is shocking at the moment.
As SlowDragon says I would look on the LetsGetChecked.ie website. Also they often have discount codes for 30 or 40% off for the UK site. It's usually at the top of the site if there are any discounts. Can't see why they wouldn't do something similar that you could use.
I don't ever remember SlowDragon . I did ask this time and she said no point in checking levels, so l assume I did at some point. I will try find out and if not l will do full test.
Hi I’m not sure if this will help you but I have been on 125mg for three years. I have had blood tests and was told to stay on the same dosage. I happened to look at my repeat prescriptions and noticed that I should only be taking 100mg for one day and125mg the next every alternate. When I called my GP I was told that it was changed three years ago. I was really upset. TheGP then said I was to reduce to 100mg a day .I tried this for three months, had another blood test and called the GP for results.
GP said to stay on 100mg so I let GP have it.
I experienced muscle pain
Joint pain
Itchy skin
Depression
Brain fog
Weight gain
Headaches daily
I was in a terrible state, the GP then said to go back on 125mg and have another blood test in three months.
If they want to reduce it again I will ask for a referral to endocrinologist.
Hi @Molly1965 Thanks for telling me your storey. Us your conversion good? I will absolutely fight a reduction in medication until l have full bloods done either by doctor or private testing. I have been on 100mg for 3 years and felt OKish even though my TSH was 3.90 last year. But also try get all the vitamins etc optimal.
If you look at page 7 of this document you can see typical costs of thyroid function tests nice.org.uk/guidance/ng145/... .
My local hospital pays a lot less. This begs the question why don’t the hospital managers get off their backsides and make sure they all use the cheapest lab. All major companies benchmark their costs and performance, the NHS should do likewise.
Just had a quick look and it's £4.96 for ft3 test. So add a bit for exchange rate, price gouging and sure another little pinch for the pot.... Bargain at €15! which l would gladly pay!
"I will absolutely fight a reduction in medication until l have full bloods done either by doctor or private testing. I have been on 100mg for 3 years and felt OKish even though my TSH was 3.90 last year. But also try get all the vitamins etc optimal."
Bear with me here... have you considered that a slight dose reduction might actually help your symptoms ? It does sometimes happen that we need a little less if our needs change for some reason, or perhaps because our activity level is lower. etc
It's happened to me twice now ,and i didn't want to agree to reduce the dose either , but much as it pains me to admit it , the Doctor was right on those occasions.
I have also been reduced a few times when the GP was not right ,and trying it then made me worse , so i had to argue to have it put back up....so i've seen both side of this coin.
But logically, if you felt OK last year with TSH 3.90 (0.27-4.20)
Free T4 13.2 (10.5-22.0)
T3 1.21 (1.08-2.90)
and then you felt worse since Nov last year and then discovered the TSH is now significantly lower and your fT4 is relatively higher at 17 /20 ish .....i think you should seriously consider lowering the dose by just a little for couple of months as an experiment to see if it improves how you feel .
I would also say that if you 'usually' test 12 hours after taking Levo , and you have all your previous results done this way.. then personally i wouldn't change how you do it now ... it just makes it harder to compare your new result to your previous results.
12 hrs is a reasonably long gap for levo, you will certainly have missed the worst of the 'after dose peak' by 12 hrs .... from the graphs i've seen ,fT4 seems to spike about 2 hrs after dose is taken ,then stay high until about 6 hrs after ...... by 12 hrs its actually fallen reasonably close to where it would be after 24hrs.
So if your previous FT4 13.2 [10.5 -22] was taken after 12 hrs , and your recent 20 [10.5-22] was also taken after 12 hrs , then you can easily compare them and you can see that you currently do have a much higher level of FT4 than you had last year when you felt OK.
If you change how you test now to 24 hrs after dose , you won't be able to compare your fT4 result to your historic results as accurately .
The '24 hrs after last dose' is not an absolute 'rule ' as such , the more important point is to use consistent timings so we can compare to previous results properly , ( and to understand when the peak occurs after a dose is taken so we know if we are measuring the peak / mid point / or the lowest point)
It is very easy to fall into the trap of thinking symptoms of slight overmediction are Hypo symptoms ... the difference between feeling lousy from being slightly 'over' to feeling lousy from being slightly 'under' is not always as obvious as we would expect.
Symptoms can sometimes be misleading , and sometimes TSH is a good indicator that something has changed.
Both times that i have ended up genuinely overmedicated my TSH was actually a fairly reliable indicator.
My 'feeling ok' level for many yrs was 0.05 - 0.09 ish ... my fT4 went up/ down and all over the shop , but TSH stayed there ... however when i was overmedicated (proved because a slight dose reduction helped) i now see from looking back over my old records that my TSH had fallen on both occasions to 0.01/0.02
If you currently take 100mcg i would be tempted to try a very slightly lower dose of 87.5mcgh for a couple of months just to rule it out.
You may be surprised , as i was ... i now sleep better than i had done for several years, and all sorts of recurrent aches and pains that i used to have , have now disappeared .
I last reduced from 125mcg to 112.5mcg about 2 years ago . (because my fT4 kept going up)
For the first few weeks i thought it was a mistake and wanted to go back up , but after a couple of months i realised i actually felt much better than i had on 125mcg.
Hello tattybogle Thanks so much for your reply. I understand what you're saying and l guess l did have a knee jerk reaction to the doctor's suggestion of a reduction. Listening to your argument l would be open to a slight decrease but am very keen to learn my conversion rate before that. I know its two different actions but say my conversion was fine, then the focus would be on the TSH/pituitary?If the doctor convinces the lab to do T3 on Monday I'll have the result in a week, if not I will do private testing. I am open to suggestions from more knowledgeable peeps than me. And to be honest this beautiful Spring sunshine is lifting my spirits and I'm looking forward to the Summer.
i realised something about myself later ~ (after i had mentally taken 'ownership' of my thyroid medication decisions , and stopped allowing it to be something i thought 'the doctor was the boss of' ~ which i finally figured out was more disempowering than the disease itself is )
.....I realised that i had reacted to the GP's suggestion that i needed my dose reducing as though it was a suggestion that i was somehow 'less unwell' than someone who needed a bigger dose than me , or less unwell than i had been when i was taking a higher dose...., stupid .... but somehow it felt 'diminishing ' to have my dose lowered .
I know why i felt like this . and it's largely the doctors fault .... they belittle every serious effect of hypothyroidism on your life for decades ,and then, when they suggest a lower dose it sort of feels like they are just belittling it some more by saying "you're not that ill anymore"
Also, they spend years telling you this, that or the other ,couldn't possibly be a 'thyroid symptom' ... and they don't treat difficulties we report when changing Levo brand etc with any respect ... so when we do feel VERY unwell ,we find it hard to believe that it could just be a little matter of 'very slightly too much Levo causing all the trouble' .... i'm sure if they had treated the whole issue with more respect from the start of diagnosis / treatment , i would have found it much easier to accept their suggestion to try a lower dose.
Oh my Lord you hit the nail on the head! And because we fought so hard for the increase in the first place, it's seems like a back down or an admission of ignorance on our behalf.
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