Latest test results

[MushroomRisotto]

I've just received my results from my latest NHS blood test - they are in my bio, but summary here. I have Hashimoto's.

Serum TSH has dropped from original 16.1 to 0.04! Currently on 75mcg Levothyroxine since October last year when it was increased from 50mcg at my request. 75mcg would be the standard dose for my weight.

Free T4 is 23.2 - above range of 10.9 - 21.2. Free T3 is 6 which is just within range (83.3%).

The lab has flagged TSH and T4 to my GP, and I'll attempt to get a phone conversation tomorrow.

So my first question is, given that it would seem a reduction in Levo is needed, should I be going down to 50mcg or is that too big a jump (I seem to remember seeing on here that large adjustments aren't always a good idea). My T4 was mid-range (44.3%) on that dose before October. How soon after a change should I ask for another blood test? I'm a bit shocked by these test results to be honest.

And then vitamins and iron:

Ferritin is 27 ug/L which is right at the bottom of the range (10 - 291) - 6%. I've been taking Three Arrows for about a month, one tablet per day. I'm vegetarian, but decided to go for that supplement despite that. Also supplementing with pumpkin seeds and (extra!) dark chocolate. However, ferritin hasn't increased at all since October. My vitamin C intake is pretty good, I think, from both food and a joint supplement.

B12 - this was low according to Medichecks test in October (active B12). I've been supplementing with Nature Provides B12 daily since then. Unfortunately the NHS test was for serum B12 rather than active (544 ng/L with range of 211 - 911) and despite my best efforts I've not been able to make the comparison, but I understand that active B12 is the more important measurement. The serum level is mid-range, but I can't tell if there's been an improvement because of the different tests.

Serum folate is >24 ug/L, which is slightly above range - lab described as satisfactory. Was 8.6 nmol/L in October (range 7 - 35) - again I haven't been able to compare the two because of different units, but clearly it's increased.

Taking Igneous Super-B complex (2 tablets). Stopped it a few days before the blood test, and the test was taken at 9am after overnight fast and more than 24 hours since taking Levothyroxine.

Any comments on these results would be welcome. I've seen that it can take a long time for ferritin to increase; should I be getting a full iron panel (probably would need to do that privately, but you never know)? Something like the Medichecks basic test? If I ask for one from my GP I might need a good argument ahead of time... I'll also get an active B12 test again so that I can see how that's changed from October.

The NHS test included full blood count; all of those results were within normal range.

Thanks in advance to anyone who has the patience to read all these words and numbers

[greygoose]

As you have Hashi's, your rise in FT4 - and subsequent drop in TSH - is more likely to be due to the disease than anything to do with your dose. Do you know how Hashi's 'works'?

75mcg would be the standard dose for my weight.

Not so. Dosing by weight is just a rough guide for people who have had their thyroid removed. It would then be titrated up or down according to blood test results. It was never intended to guide dosing for people with hypothyroidism. People who have become hypo slowly, rather than suddenly by having their thyroids removed, should follow the protocol for taking any hormones: i.e. starting low and increasing slowly. And continue increasing until all your symptoms are gone and you feel well. Not stopping when you reach a certain number dictated by your weight. This is a distortion of protocols.

The active B12 test is preferable to the serum test, if you can get it - the NHS doesn't do it. But, as a rough guide, with the serum test the result should be at least over 550. Ignore the top number of the test because they vary enormously according to the labs, but it is water soluble so any excess will be excreted, and it should be quite high, anyway.

[MushroomRisotto in reply to greygoose]

Thanks greygoose . I understand what you mean about not dosing by weight, although I did find it helpful in persuading my GP to increase from 50mcg to 75. As for "feeling well" - I didn't know until last June that I had hypothyroidism, and I don't really have a baseline to judge. Subjectively, I've had more energy recently and felt more motivated, so was starting to think this was the right dose for me. I posted here for advice partly because I suspect my GP will insist on reducing the dose because of the low TSH value, and particularly because of my age (I'm 69).. A quick search on this site has shown me that I've a lot to learn about Hashi's, particularly about flares and I'll do some serious reading.

I'll definitely get an active B12 test - and thanks for the rough guide. I'm not concerned about B12 being too high, just more concerned that it's high enough.

[greygoose in reply to MushroomRisotto]

Yes, I understand it can be useful in getting an increase - but only up to a certain point. Pretty certain you're going to need another increase at some point, though. And if your doctor was reluctant to increase to 75 mcg, he'll probably refuse outright to increase to 100, so I don't know how you'll persuade him then.

Refuse to reduce due to TSH alone. It is a very unreliable rough guide to thyroid status and on its own doesn't tell you much. Obviously he's not going to want to increase dose whilst your FT4 is so high but if it is a Hashi's 'hyper' swing (calling it a flare leads to so much confusion) then eventually the level is going to drop again and you will be hypo.

And if he refuses on the grounds of your age, then there's a lot you can say! But we'll go into that when and if it happens. Don't want to over-whelm you on your first post. Suffice to say that all this guff they now talk about older people having higher TSH refers to euthyroid people, not hypos.

Your B12 is good, but could be higher.

[MushroomRisotto in reply to greygoose]

Don't worry about overwhelm! it's not my first post, but previous ones were a while ago, and replies very helpful. I've read a lot on here, but had missed the details about Hashi's swings - I think I probably am a bit hyper at the moment. I'm planning to speak to a different doctor than the one I had the struggle with, and thinking I'll ask to keep the dosage the same or only slightly reduced (as suggested by tattybogle in another reply), monitor my own symptoms and retest in 6-8 weeks.

[MushroomRisotto in reply to greygoose]

Just want to add that I've found a really clear explanation from yourself elsewhere on here about what happens with a Hashi's hyper swing - so clear that I think I can use it when speaking to my doctor. Thanks.

[greygoose in reply to MushroomRisotto]

You're welcome.

[tattybogle]

i'd suggest 62.5mcg is the next logical step (12.5mcg tablets are available , but stupidly expensive , and only in limited brands which some don't get on with eg TEVA, so it's usually prescribed as 50mcg / 75mcg alternate days .... you can cut a 25mcg in half if you prefer to take same dose each day .. some folk feel ok taking alternate doses , but some can feel the difference and find it unsettling.. if splitting tables take the remaining half the next day rather than cutting up loads of them all at once , that way of the split isn't quite accurate , you know you are getting the rest of it the next day)

Try any new dose for 6-8 wks . then retest and asses how you feel . It can take at least 4/5 wks for symptoms to begin to settle down after a dose change , and TSH takes it's own sweet time to get wherever it's going to go, so no point re-testing before 6 wks on new dose .

Hashimoto's can cause ups and downs in T4/T3 / TSH levels, so don't be surprised if your dose had to adjusted up / down and appears to defy logic at times . You may need 75mcg again at some point later .

dose by weight is not very reliable at all , it's just a general 'guestimate' that often has no relation to what is actually needed by an individual eg for many years i needed significantly more than 1.6mcg /kg .. and nowadays i need a bit less than 1.6mcg / kg . yet i'm same weight . ( less muscles though)

but equally there are people one here who don't ever need as much as 1.6mcg /kg

[MushroomRisotto in reply to tattybogle]

Thanks tattybogle - I'll suggest this to my GP and see if I can get him to agree. I'm happy to try alternate days, or to split. Interesting you mention TEVA - I'm obviously aware from posts on here that some people don't get on with it, and I suspect that I do react differently to it than to other brands although it's hard to be sure. At the moment my 75mcg is part Accord 50mcg, and 25mcg of whatever the NHS pharmacy has in stock (they will swap out TEVA if they have another brand in stock, but otherwise I have to take what they have). Currently TEVA after a couple of month's Accord/Wockhardt. It's not helpful at all when the advice is to stick to the same brand. Your advice regarding dosage and Hashi's ups and downs is the same as Greygoose's - thank you - and I realise that I need to read more about Hashi's.

[SlowDragon Administrator]

I would agree with tattybogle reduce Levo a small amount

Perhaps even only to 62.5mcg 4 days and 75mcg 3 days

which brand Levo are you using

Meanwhile ESSENTIAL to improve low ferritin

Once vitamin levels are optimal you may be able to increase Levo dose back to 75mcg daily

[MushroomRisotto in reply to SlowDragon]

Thanks for the advice - really helpful. I have no control over the brand of Levo when using the NHS pharmacy attached to the GP surgery. Currently 50mcg of Accord (still using up what I had before my dosage was increased), and the extra 25mcg depends on what the pharmacy has in. So far I've had Accord, Wockhardt and now Teva. I check what's been dispensed and the pharmacy will swap if they have anything else in stock but tell me there's no choice if Teva is all they have. Not good, is it - I'm going to have a word with an independent pharmacy nearby to see if they can do better. I've asked for no Teva when requesting repeat prescription, but this doesn't get passed to the pharmacy. Rant over!

Regarding low ferritin, I'm hoping that continuing to supplement with Three Arrows will show results - I've only been taking it for a month due to the long lead time delivering from the USA.

[SlowDragon Administrator in reply to MushroomRisotto]

Many people find Levothyroxine brands are not interchangeable.

At very least get note added to all future prescriptions “no Teva brand “

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Vencamil or Teva

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Helpful post about Teva

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Relatively new ……Hillcross brand

This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

[pennyannie]

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal :

I now aim for ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500++ ) and vitamin D up at around 125 ;

Your ferritin is under 30 and the guidelines suggest that the NHS run further tests before you start taking any supplements - and similarly you also need to be checked out for celiac, pernicious anemia and certain food stuffs such as gluten, dairy, wheat as with Hashimoto's - for some - there does appear to be some stomach/gut absorption issues and food intolerance.

cks.nice.org.uk/topics/anae....

You might like to read around on the research and suggestions of Dr Izabella Wentz whom many forum members find a useful adjunct - thyroidpharmacist.com

[MushroomRisotto]

Thanks - I was advised previously on here regarding further tests when ferritin is low but got nowhere with a previous GP consultation. I will ask again when I speak to a (different) doctor. Thanks for the link to Dr Wentz - I've seen references to her elsewhere and will check out.

[pennyannie in reply to MushroomRisotto]

Doctors are employed and paid to follow the NHS guidelines -

and the guidelines are the rules to be followed and there to safe guard patients - and doctors alike -

good luck - though it maybe will be with a different doctor -

[MushroomRisotto in reply to pennyannie]

I've made a note of the NICE guidelines, which do indeed say that a serum ferritin level of less than 30 mcg/L confirms a diagnosis of iron deficiency, and that an unexplained iron, B12 or folate deficiency, or autoimmune thyroid disease should trigger tests for coeliac disease. Those notes will be in front of me when I speak to the doctor, which will definitely be a different one. Thanks for the support.

[helvella Administrator]

For folate:

24 micrograms per litre = 54.5455 nmol per litre

unitslab.com/node/114