After many problems with home testing (post strikes, no blood, totally haemolysed blood), I finally have some blood test results (but some also missing because haemolysed this time too).
I was diagnosed with hypothyroidism on 18th November 2022 after blood tests in August and November showed TSH of 5.48 and 9.35 respectively (fT4 was 12.9 pmol/L [11.1 - 22] at diagnosis). TPO antibodies were not elevated in November. I was started on 25 mcg levo (GP said that is my surgery's normal starting dose, nothing specific to me) and then on 5th January he put me up to 50mcg and has asked to re-test thyroid profile (probably will only be TSH and T4) 6-8 weeks after increase.
This test was done by Thriva and was bought months and months ago, before I was diagnosed hypo and was just generally feeling not great but no idea why. As such, it didn't test ideal things (which I have learnt from this forum), and I know I haven't left long enough since my levo dose changed (was also a brand change) but I have been tying to get a baseline for my vitamins since diagnosis. Seems like this is the best I can do for now and I'd really like to move forward and start taking the supplements I need. Obviously my Vit D is non-existent, but how is the rest looking?
Symptomwise, I'm still not feeling "well" but I do have days (or rather, moments of some days) when I feel slightly energised. I'm still frozen all the time, having daily Raynaud's attacks, feel extremely slow and brain fog/wordnesia constantly embarrasses me at work but I have definitely noticed my joints hurt less often and I'm waking up fewer times at night. Since going up to 50mcg levo though I feel constantly dehydrated no matter how much I drink, and my eyes are dry, scratchy, watery and painful almost every day. Is this a hypo thing, a levo thing or unrelated?
I think because I didn't have antibodies at diagnosis, and my TSH was under 10 and fT4 in range, I've been through a sort of imposter syndrome rollercoaster after being diagnosed, not daring to believe this is what is actually wrong with me and something can be done about it, and even going as far as thinking I'm a hypochondriac costing the NHS money rather than hypothyroid... But I think these results show I am definitely hypothyroid? With levo, my cholesterol has come down even though I saw it climbing from 2020 til now. Same for my ferritin, it's been over-range and climbing since 2020 (150, then 176, then hit 280 ug/L in August last year) and has now suddenly dropped.
So what should I be working on between now and my next GP review (probably early March)? Also, what changes should I be asking my GP for, or should I wait for next test results before thinking about that?
Thank you so much for anyone who makes it this far and any comments and advice! This place is great and I've learnt so much already.
Test results:
(tested at 9am, last levo dose was 8:20am the day before, fasted for at least 12 hours, haven't taken any supplements since diagnosis so I could get a baseline)
Ferritin 96 [13 - 150] ug/L (rest of Iron Profile results say haemolysed)
Active B12 65.0 [37.5 - 188] pmol/L
Folate (serum) ** HAEMOLYSED [8.83 - 60.8] nmol/L (however, NHS tested it in August 2022 - Serum folate level 3.9 ng/ml [1.9 - 25])
Thyroid Stim. Hormone 3.37 [0.270 - 4.2] mIU/L
Free Thyroxine (FT4) 16.2 [12 - 22] pmol/L
Stuff about me: 34 year old woman, 162cm tall, weighing 55kg. Diagnosed with psoriasis and Raynaud's when I was about 18 years old. Not gluten or dairy free (but I've read here about the difference it can make) but have had limited amounts of both in my diet for non-hypo reasons since 2014. Bizarrely, I was apparently tested for coeliac in 2017 but I didn't actually know until I went back through all my results recently - test was negative, but I would have barely been eating gluten back then too. Not vegan or vegetrarian, and I eat meat about 3 meals a week.
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Myalikki
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If rapid correction of vitamin D deficiency is needed, for example in people with symptoms or about to start treatment with a potent antiresorptive agent (zoledronate, denosumab, or teriparatide), prescribe a fixed loading dose followed by regular maintenance vitamin D therapy 1 month after loading.
The loading regimen should provide a total of approximately 300,000 international units (IU) of vitamin D, given either as separate weekly or daily doses over 6–10 weeks. See the section on Loading dose regimens in Prescribing information for more detailed information.
Maintenance therapy of vitamin D equivalent to 800–2000 IU daily (up to a maximum of 4000 IU daily for certain conditions such as malabsorption following specialist advice), given either daily or intermittently at a higher equivalent dose.....
If correction of vitamin D deficiency is less urgent and when co-prescribing vitamin D supplements with an oral antiresorptive agent, maintenance therapy (800–2000 IU daily) may be started without the use of loading doses.
Several vitamin D loading dose treatment regimens are available, including [ROS, 2018]:
50,000 IU once a week for 6 weeks (300,000 IU in total).
40,000 IU once a week for 7 weeks (280,000 IU in total).
1000 IU four times a day for 10 weeks (280,000 IU in total).
800 IU five times a day for 10 weeks (280,000 IU in total).
Note: this list is not exhaustive.
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the local guidelines or this summary and prescribes the loading doses.
Once the loading doses have been completed you will need a reduced amount so you should make sure that you are retested after you have finished the loading doses so that you know how much you should then take going forward. Most doctors, if they continue prescribing, only give 800iu daily which isn't enough. You may need to buy your own when you find out what new dose you need.
If GP wont retest then do this privately (link below) and post your new result at the time for members to suggest a new dose to bring your level up to what's recommended by the Vit D Society and Grassroots Health - which is 100-150nmol/L with a recent blog post on Grassroots Health suggesting 125nmol/L - then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Come back with new level after retesting and suggestions can be made for the new dose.
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 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.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels.
For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Vitabay and Vegavero are either tablets or capsules.
Vitabay does do an oil based liquid.
Vitamaze is an oil based liquid.
With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.
They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.
Triglycerides are in range.
Ferritin 96 [13 - 150] ug/L (rest of Iron Profile results say haemolysed)
This looks a good result providing that there is no inflammation present (ferritin is falsely raised when inflammation is present). If CRP was tested this is an inflammation marker and the lower the result the better.
Active B12 65.0 [37.5 - 188] pmol/L
This is low and Active B12 below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency and it is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.
If you do not have any signs/symptoms come back for suggestions of how to improve your B12 level.
Folate (serum) ** HAEMOLYSED [8.83 - 60.8] nmol/L (however, NHS tested it in August 2022 - Serum folate level 3.9 ng/ml [1.9 - 25])
Your NHS result, although within range is very low. However, until further testing of B12 has been carried out you should not supplement with anything containing methylfolate or folic acid. We can comment on this later when we know more about your B12.
No point really commenting on your thyroid results, you should retest 6-8 weeks after your dose increase.
Impossible to comment on those tests where the blood was haemolysed.
Thank you, this is such a helpful response with so much information. I will definitely go to my GP and ask for help with getting my vitamin D up initially and get supplements (no folate yet as you say though), and try to get some further investigation into B12, although I suspect that could be a struggle. To be fair to my GP though, the diagnosis came straight from him without me pushing and, from what I've read here, some GPs would not have diagnosed because TSH didn't hit 10, so I guess he's sympathetic.
Might be completely the wrong place to ask, but is there a genetic marker for pernicious anemia? I have my raw data from 23andme (another attempt at working out what's been wrong with me) so would be interested to check.
Thank you for the supplement recommendations and explaining the co-factors, definitely worry about heart stuff with a strong history of heart problems on both sides of my family so feels really empowering to understand how Vit K2-MK7 fits in.
No thyroid antiboties included in this test. Now I have a specific diagnosis, I think I will move away from Thriva (they don't offer a test for thyroglobulin antibodies at all, which SlowDragon has previously suggested I get tested for) and try Monitor My Health.
Might be completely the wrong place to ask, but is there a genetic marker for pernicious anemia? I have my raw data from 23andme (another attempt at working out what's been wrong with me) so would be interested to check.
Sorry Myalikki, I don't know.
MonitorMyHealth don't test Tg antibodies, only TPO, Medichecks and Blue Horizon do include Tg as well as TPO in some of their tests.
Going totally gluten free is definitely on my list for future, I suppose I'm just trying to sort one thing at a time so I can keep track of what helps.
I'm hoping for a levo increase when my next review comes and slightly worried GP might say TSH of 3ish is in range so no increase needed. But you guys have armed me with evidence that the aim is TSH under 1, should I end up fighting a battle!
About the imposter syndrome thing. You're not an imposter! Your blood results clearly show you have hypothyroidism regardless if you have antibodies or not. Not everyone with Hashi's has antibodies, some just don't ever show up in blood tests or there's something else called Ord's Disease which doesn't have antibodies. Sounds like you've been unwell for a while which most have with this condition by the time they get diagnosed and treated. So you're not a hypochondriac either and in a while should feel better with optimal treatment for hypothyroidism.
50mcgs is really just a started dose and many report feeling worse on low doses of Levo as it's not enough to fully replace your own thyroid production. Give it time and further increases in Levo plus getting your key vitamins to optimal - ferritin, folate, B12 & D3 and you should feel lot's better.
Agreed re. the imposter thing. (correction about Ord's though .. it "usually" has TPOab antibodies, same as hashimoto's "usually" does , but sometimes they may not . I've probably got Ord's ie. never had goitre ~ and i had 1000's of TPOab )
Myalikki ... if it helps ~ i felt like an imposter and i knew i had positive TPOab antibodies, but that didn't stop me falling prey to "am i making a big fuss about nothing much" for about 15 years ( even since i found out i had literally thousands of them at diagnosis, i STILL feel like an imposter sometimes )
Your TSH of 9 was higher than mine was at diagnosis. i only had a rather unconvincing 5.7 then 6.8
I felt like an imposter( or perhaps 'have been made to feel like one' ) because i wasn't overweight.
it's not 'us' .. it's 'them ' ~ mostly because of the way Doctors talk to us about hypothyroidism and it's symptoms ~ If the Doctor who diagnosed me had told me just how many organs /systems / cells in my body (including my brain) are totally reliant on precisely the right level of thyroid hormone, to work properly and repair themselves, and that all manner of problems and symptoms are highly likely when that level is not quite right ... i might not have given myself such a hard time when bits of me still didn't work right .
Thyroid hormones control EVERYTHING... and if they are not right ~ for whatever reason ~ including if we don't know the reason ~ then we are not going to function properly .
Far from being imposters , people with untreated (or inadequately treated) hypothyroidism often have to be pretty heroic just to make dinner .
Tatty and Jaydee1507 , thank you both so much for your empathic responses! I am sure so many people have the imposter thing, it just helps so much to hear from others and feel validated. I can't quite believe just how unwell it's made me feel being only a bit out of range. When I read peoples' stories on here of sky high TSH I really wonder how truly terrible they must feel! I realised my blood test results were available online going back to 2016 so I trawled through them all recently. My TSH hasn't been lower than about 3.5 in all these years... But of course I was always told my bloods came back "normal".
I feel so grateful for my manager at work who takes health very seriously but I bet millions of people (whether at work, home or both) are quite literally told they're making a big fuss over not a lot...
I love the idea that we're superheros who make dinner! I love even more that there's hope for things getting better.
Probably the majority of people get diagnosed with a not hugely high TSH. The range in the UK is pretty wide and I think* in the USA it's lower and more narrow. Doctors are uber conservative about treatment for hypothyroidism which afterall will require a lifetime of treatment but it is none the less cruel for people to be suffering so long.
The relationship between 'how high TSH is' and 'how bad you feel' is not as tight or as linear you'd think . There is more to it, and after all TSH itself doesn't 'make you feel' anything .. it's just 'a messenger' who is part of an extremely complex regulating system.
Usually we only have part of the information anyway ..ie. most people do not have fT3 measured at the time they have such sky high TSH levels .
High TSH actually means the thyroid is making relatively more T3 than usual .. (it turns up the ration of T3:T4 that the thyroid produces) And high TSH makes the deiodinases in cells increase the efficiency of converting T4 to T3 ,. So arguably people with low T4/T3 who's TSH didn't rise so much for whatever reason are worse off than people who's TSH went through the roof.
There have been people on here with with TSH well over 100 ,wondering why everyone is freaking out, who's GP is surprised they are not in a coma ~ still walking and taking in full sentences and saying they are 'struggling a bit at the gym' and questioning if they really need to take the Levo that their panicked GP has given them ,since they feel more or less ok .
And i'm certain it's not a 'heroic' thing , it's just that TSH does not have a direct relationship to how you feel~ i'm not a wimp and was very fit and very strong , yet i was hauling myself up stairs by the bannister, wearing 4 layers and a hat indoors ,, and was more or less a monosyllabic zombie after 4 pm .. and yet my TSH was 5.7 / 6.8 at the time . If my GP hadn't found TPOab 2499 [0-50] i very much doubt i'd have been n prescribed Levo until many year later.
Interesting you've experienced haemolysed blood test as I've just had 2 tests with Monitor My Health rejected for this reason. The thyroid readings were OK, but the ones I really wanted were the Vitamins and they were haemolysed and therefore in error. Never had this problem before with blood tests and I was very careful with the 2nd one and still it got rejected.
That's interesting... do you know what lab they use? I first started using Thriva in 2020 (unexplained health worries but didn't want to waste NHS time during a pandemic) and my first test went perfectly. They used Eurofins lab for that one, and since then, all others have been sent to Inuvi (previously Pura Diagnostics) and I have had problems and missing results every single time, despite following all the advice and guidance available (which was exactly what I did for my first test too). Hoping I will find a company/lab that works for me and refine my methods because clearly, fingerprick testing is going to be a reasonably regular thing for me now...
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