I’ve just had blood tests and trying to get a print out of results. I’ve attached a test I got myself for info.
I got a call to say I've to increase my thyroxine from 200 to 225 (I have been on 200 since my first blood test after tt 12 years ago) I’ve to be retested end of oct.
just had a call to say I need another 2 more tests as full blood count is off and also my glucose slightly high so needs a fasting test .
so feeling pretty down now with a few doctors appointments now booked.
When did you take your last dose of Levo before this test?
Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
How do you take your Levo?
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
What supplements do you take?
Had test Monday 9 am and followed all the advice I hadn’t taken Levo since Sunday morning
I asked for ferritin but doesn’t look like she’s done it I’ll ask when I go back in for blood tests
D came back insufficient (I’m on prescription800iu) . They didn’t test b12
Theres something strange going on with your absorption as FT4 is over range yet TSH above 3. Thats odd and a possible cause could be how you take your Levo.
Be sure to take it on an empty stomach, with nothing else other than water for an hour afterwards.
Not a good idea to increase with FT4 already over range.
You dont seem to be converting well at all so might be time to think about adding some T3.
You can email info@thyroiduk.org for a list of T3 friendly Endo's. Start a new post asking for feedback by private message only.
800iu of vit D wont be enough to rise your level to optimal. Likely you need a minimum of 3,000iu per day.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Surgery just called to ask if I was taking my vitamin d it’s like they don’t understand. She’s away to ask dr now. They changed from gel caps to pills during lockdown (to save money probably) and I’ve heard before gel caps absorb better . Also heard before I need a higher dose like you say.
I’m also concerned that adding more levo won’t fix it if I’m not converting.
got some good stuff to read on here .
Insufficurnt d and this being off will be contributing to bp being high and I can’t lose weight I’m writing everything down and trying so hard now . Low energy and bit of a a stressful life with my elderly parent to keep an eye on
so it was 24hrs from last levo for the latest test (that you don't know results of yet) ,
just checking , did you also leave a 24 hr gap for the 08/05 test that these results are from ?
Yes I learned that on here and do it before every test. My white coat syndrome is in overdrive but I will pluck up the courage to ask for a printout soon
ok . let us know what latest results are when you get them .
GP may only have done TSH , which will be why they are saying to increase dose.
If they have also tested fT4 (and if it's still as high as this test from May) then increasing levo is not really the best idea, as you already have more than enough fT4 , and instead they ought to be looking at your low fT3.... but of course the NHS won't know your fT3 is this low , because they almost certainly won't have tested it .....
The lowish fT3 might explain why your TSH is still this high despite having loads of FT4 ( you would usually expect TSH to be pretty low with fT4 that high ......also , just checking ( because it is what GP's will think of when they see high TSH together with high fT4 )~ had you taken it consistently every day for full 6 weeks before that May test ? ... because missing doses occasionally and then remembering to be more regular for a few days before test is the simplest explanation for high TSH with high fT4. I'm assuming this doesn't apply to you, but your GP might think so.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
re. getting your results :
you only need to go to GP receptionist to ask for printout, just confidently say "hi , please could you just print out my latest thyroid results from x date , the results and the lab ranges please , " ......like you do it all the time . it usually works , sometimes you might get a receptionist that is not sure if they are allowed to , and they may say they need to check with GP first ... in which case say that's ok you'll come back in a day or so.
basically , they are allowed to give you your results as long as a GP has already seen the results first.
Thanks I’ll get them definitely I hadnt thought of them not being aware of the full picture . ie the high t4 I’ll print out my private ones and ask them to keep it on my file too . I’ve also got private one from 2020 attached to show what it used to be then
Thanks again
D came back insufficient (I’m on prescription800iu) .
Exactly what was vitamin D result
800iu is tiny dose
You will need to increase to at least 2000iu daily and retest in 2-3 months
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly when supplementing
Can test via NHS private testing service
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
They didn’t test b12
What about folate?
Are you taking daily vitamin B complex?
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
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)
waiting for a print out but it was deficient again . I’ve been deficient before but got it up to insufficient in 2020 but they don’t test often
I insisted on a vitamin d test today telling them I want to know if their pills are working and she said but you were sufficient last test but Mondays test results showed it’s back to deficient again .
I need a print out I know sorry
Many, many members find they need at least 2000-4000iu daily
You will need to self supplement and self test to maintain GOOD vitamin D level
Thanks you know your stuff thanks do much for sharing and helping people
test B12, folate and ferritin at least annually too
Again many many members find they need to take vitamin B complex continuously to maintain GOOD folate and B12
low vitamin levels directly linked to low FT3
For good conversion of Ft4 to FT3 important to maintain optimal vitamin levels
I’m going to look tonight to see about doing them privately thanks
You are telling me what I thought so confirming I’m not going mad 🥴 thanks
Your TSH is high because your FT3 is so low. You are a very poor converter and the last thing you need is more levo!
Your FT4 is already too high and that's not a good thing long-term as it increases your risk of cancer and heart problems. If anything, you need a reduction in levo because having an FT4 that high can make conversion worse.
But, what you really, really need is some T3 added to a reduced dose of levo.
Thanks so much I know but the doctors don’t seem to get it. I told the nurse and I’m going to write to them with my private result showing it and explaining why I don’t agree that increasing it will help . Thanks again I keep forgetting to thank the great people on here .
No, doctors know nothing about thyroid. They haven't a clue! And I don't even know if they're capable of understanding. The majority aren't very open-minded. But, worth a try. 
I bought the book thyroid for dummies when I first got my tt it should be sent to doctors maybe tho.
It’s the feelings of guilt when I ‘fail’ the tests I can’t cope with
I'm sorry? Why would you feel guilty? None of this is your fault. Which particular tests are you 'failing'?
I just feel that way but they are all bad glucose needs redone overweight bp vitamin d and full bloods
It’s the way they make me feel
Poor glucose control, being overweight and high BP are all the result of being hypo and not being optimally medicated.
That is not your fault, have they investigated why you aren't absorbing it? Or offered liquid Levothyroxine which has better absorbtion or offered you an Endo referral to look at other treatment options like adding T3?
If not then they are the ones who should be sorry. They have failed you.
I don't think the OP has any trouble absorbing the levo. Her FT4 is over-range. What she can't do is convert it to T3.
I just wondered why on such a high dose of Levo her TSH was over 3. Seems a bit odd 😁
same thing happened to me recently Sparklingsunshine ...my conversion from T4 to T3 gradually worsened , and my TSH went steadily up to 5 , despite fT4 remaining at top of range.
for many yrs i used to get fT3 of around 5 [3.1-6.8) with fT4 at top end, while TSH sat around 0.05 .
over several months fT3 lowered to 4 , and then 3.6 ,with fT4 still top end , the TSH correspondingly rose to 2.9 then 5 .
So there is no problem with absorption of Levo from my gut .. this is shown by the high fT4 result (if poor absorption was causing the 'high' TSH , the ft4 result would be lowish ) ... but TSH has risen as the T3 level has worsened (for whatever reason) , and as TSH is influenced by both T4 and T3 levels, (and as T3 has a more powerful effect on it than T4) a fall in T3 levels can cause TSH to be high even when the fT4 level is high.
The background to me being 200mcg levo was when I got my thyroid out I was put on 100mcg but my first blood test was 35. The doctor phoned and said he’d checked with hospital and I was to double my dose to 200. I have been on that ever since .
Probably about 13 years since I had my tt now.
I’ve put on a lot of weight since then but dose didn’t change .
My tsh has always been about 3 or 4 since the start.
Because her FT3 is right at the bottom of the range.
Ok thanks.
Thank you. I’ve tried and I think my diet is healthy now I’ve just stopped having the bad stuff but it’s not working . It’s obviously exercise I need. I work full time and have a mm elderly mum to help out so my energy needs to be better
I'm not sure its your diet or exercise or lack of that's the issue. Just an observation but you seem very down on yourself and its sad to hear. Having this condition isnt your fault, none of us asked for or deserved to get it.
You sound like you have a lot on your plate, working full time, caring for your mum, as well as battling with several chronic conditions, many of which seem to be the result of having poorly managed hypo.
I think you need to be kinder to yourself, cut yourself some slack. You are working full time, looking after your mum and probably doing hundreds of other daily tasks. That's no mean feat when feeling terrible. I think you should be very proud of yourself.
Its very likely its your low T3 that is preventing you from losing weight. Not your diet and not exercise. Until you can get that sorted then you are going to find loosing weight very difficult. Its T3 that controls metabolism.
Thanks that made me cry I’ve been like this all day.
I should add it’s very unlike me I don’t get down very often at all I’m quite a cheery person but I’ve just had enough today .
I’ve been a bit stressed lately maybe this was the final straw . my mum 88 isn’t coping since my dad died 3 years ago traumatic 8 months before it. We’re testing her for Alzheimer’s etc just now waiting for a brain scan.
Oh and I’m 50 and at menopause time . F u n
THANKS FOR YOUR KINDNESS
I've been there, was a carer for my mum for 8 years after my dad died, bless her she wasnt easy and looking after her required a lot of patience. I wasnt working full time either so can only imagine how much you must be struggling. Please dont beat yourself up, you are doing brilliantly.
Thanks she’s hard work it’s not her fault I know . When my dad had delirium I had to help nurse change his catheter in lockdown and all sorts I’m not ready for my mum declining (she’s not on any meds and healthy but confused) and definitely not wanting to see her in a nursing home like dad was at the last 3 months of life
My mum had to go into a home, she was blind, deaf, cognitively impaired. She had a bad fall in 2019 and it completely changed her, she lost her confidence and was scared on her own.
We fought to keep her at home but for her own safety she had to go into one. She hated it and spent 3 very unhappy years there. If you can manage to keep her at home I would. I feel a lot of guilt about how mum spent her final years. Its not what we want for them, is it?
It is terrible isn’t it heartbreaking. my dad fell and broke his femur was in hospital in lockdown and then went delirious and we had no choice but to put him in a nursing home . Meanwhile my mum was hysterical n upset every single day for 8 months (I drove her there after work most days and my sister did her share of the rota too) . 3 months in the expensive nursing home he was miserable he went from a large XL for ex policeman to a skeletal body. They fed him more sedatives than food (he loved food too) as he faded away every day . I can’t cope if that happened again
Maybe that’s when my energy ran out
Thyroid problems are passed down genetically. Your father may have had a thyroid problem as the cause of his problems. Please get a home thyroid test kit for your mum and test her thyroid and B12, folate, Vit d and ferritin, and post her results. Your mum MAY have a thyroid problem, which , if treated, may hit her confusion on the head to the extent that it disappears. This will make your life AND her's much more bearable. The confusion may be low T3, which the NHS won't test. Good Luck. I really do think there is light at the end of the tunnel for you!
Hi mums been tested a lot recently and is ok but I think the genetic link is maybe my dad’s sister she had thyroid removed too. I’m not sure but think she had thyroid cancer maybe.
Just getting mum tested for Alzheimer’s/dementia now waiting for a scan. Her anxiety I think is mostly due to my dad doing everything before he died the worry of it all and £1000 a week nursing home fees she paid for my dad which my mum sees as wasting his savings and worries about Money even though she’s fine.
My thyroid was removed because of a goiter (I was totally fine before that lump)
Even if not a thyroid problem with your mum, non thyroidal illness lowers T3. All the stress and worry will be making her ill. I think her T3 will be too low. A top Harley Street doctor , in a video available on the internet where he spoke at a Thyroid Trust event, said that alzheimers is reversible if take T3 if it is low.
A forum member stated on the forum that 80% of the adult population in a typical German town is on thyroid hormones. I think in Germany they treat when TSH much lower in range than in the UK. It would be interesting to see the results, if everyone over , say 65, 70 ,75 , 80 and so on were tested for thyroid problems. How many wouldn't have a thyroid problem, I wonder. We are told that thyroid nudules are common place even in healthy people!!!???!!!
I'll second that Thyroidmeg .
None of this is your fault. and you have not failed.
people with healthy working thyroids do not have TSH 3 with very high fT4 and very low T3.. they tend to have TSH around 1 with T4 and T3 relatively balanced , their thyroid produces extra T3 and T4 on demand ,, and their body also increases the efficiency of conversion from T4 to T3 as needed. We loose these benefits with a damaged thyroid, so it's not surprising some of us don't do very well on just levo, and get really tired sometimes .
you are not being lazy .. you sound pretty busy to me .
rather than flogging exhausted cells in the body to 'do more exercise' to loose weight , it is likely to be more beneficial to replace their thyroid hormones properly , then the body would be more likely to loose weight naturally.
so yes, you could just increase levo dose as GP suggests ...and this may ( or may not) increase your T3 and help you feel a bit better, but in the long term having such a high fT4 (and getting not much T3 from it) does increase the risks of getting all sorts of other health problems ...... and if your GP's don't know this and are happy to just chuck more T4 at the problem, without using their brains to think about why your T4 is high at the same time as your TSH is high .......then THEY are the ones who are failing .... not you.
It’s scary how little they know. I’ve explained this to my partner and he understands a bit and is a great support. Lucky man isn’t on any pills
Too much exercise could make things worse. It will use up your calories that you need for conversion. With an FT3 that low, your exercise should be at a minimum - and you probably get as much as you need just in your daily life.
Remember, everything you do is 'exercise', even breathing. You don't have to put on a pair of shorts and run around the park, or go to the gym. Just live your life, going to work and looking after your mum and you're fine. It's not going to improve your conversion or make you lose weight, anyway.
Thank you again. I’m always out and about shopping for my mum and visiting her 4 or 5 times a week I honestly don’t think I’m lazy . I’m very overweight tho and I’m not a lazy person maybe lazy through tiredness at times. I’m healthy eater mainly love fruit n veg . Cut that fat off everything have sugar free muesli I do try .
I’ve read a link about vitamin d deficiency affecting blood pressure so have just taken another vitamin d
I’ll keep doing what I can
Cut that fat off everything have sugar free muesli I do try .
Woah, woah, woah, that's not right. Eating fat doesn't make you fat. Your body needs it. Cutting fat out of your diet can have serious consequences.
I did a post on it some time ago but the link in that post doesn't work anymore, here is one that does:
inbodyusa.com/blogs/inbodyb....
But I'll give you a link to the post because there are some interesting comments in it:
healthunlocked.com/thyroidu...
As to the sugar-free muesli, are you sure it doesn't contain something even worse than sugar? Like an artificial sweetener? No harm in a bit of sugar from time to time - especially as in the good mueslis it should be brown cane sugar.
No-one here would accuse you of being lazy, or not trying. We know that weight-gain is a hypo symptom and that it's rarely due to putting on fat, anyway. 9 times out of 10 it will be water retention. And no diet will help you with that.
👏 here here, read the intro and was about to say the same.
Team fat is good here 😋👍
I have plenty fat esp in my grilled breakfast at weekend and the crisps etc and oatcakes. I’ll read the post thank you I’m still learning from you.
Muesli ingredients don’t seem to contain sweetener (pic attached) but I’m more a savoury person
The blood pressure pill dr wants to add is a diuretic.
I do think I have water retention tho it feels like it somehow.fingers crossed I feel like myself again one day
Oh blimey I’d run a mile from all the wheat and dairy, Alpen from memory is really sweet, that would give me a low sugar crash about 2 hours after eating leaving me chasing something to ‘hit the spot’ all day. But if it works for you then that’s great, we are all different 🌱
It’s the no added Sugar version I have. I don’t like sweet I can’t eat the original one it is very sweet
ah… that sounds better, sorry I missed that point about low sugar 👍
Looks OK. But there's really no need to cut the fat off your meat unless you don't like it.
I’m not keen on it (I can ignore fat in sausage etc but not on bacon) I cut it off cold meat too. Must be a visual thing
Bacon fat is the best! And ham fat. Don't like fat on beef but then I don't eat beef. Come to that, I don't eat pig, either, but I do miss the bacon fat. lol All the taste is in the fat. Meat without fat is pretty dreary. But, as long as you're getting plenty of butter, cream, cheese, olive oil and other good fats, that's fine.
Yes plenty fat still. Olive oil oatcakes are the best with or without cheese 
Hmmm... That doesn't sound very tempting to me.
Do you think you could afford to have a private consultation with Roseways Chemists? I’m afraid I don’t remember exactly what the cost is but it’s very reasonable for private medicine. You could check their website & phone for details. Their prescriber will look at your blood tests, results etc during a phone consultation & can prescribe T3 which is what you’re desperate for. It might be the best money you ever spent. Worked for me.
You just tell your GPs that you’re being privately treated for hypothyroidism & don’t give them the results. Mine did ask for dosages but you don’t have to tell them.
I’ll have a look I’m in Scotland tho
It’s all done at Roseways by phone & post. System works well & you might be amazed the difference T3 could make to yup. Sounds as if you need a boost. Good luck
thyroid medication adjustment 
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