Hi all, I posted in here 2 months ago after discovering my thyroid blood results were abnormal. I saw a GP and agreed an increase in dosage from 200 to 225 daily levothyroxine. I’ve had another blood test (Friday just gone) and the results on my NHS app state ‘ Abnormal, but to be expected ‘ … should I not if had any improvement? Abnormal, yet again! I’ve made a docs appointment for tomorrow and I’m fed up of being so symptomatic since Xmas.
Abnormal blood test again! : Hi all, I posted in... - Thyroid UK
Abnormal blood test again!
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Itsneversimple
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They need to explain "abnormal"!
Though I guess it means your FT4 is high
225mcg levo is a large dose!
Over range FT4 is not advised because in the longer term it has the potential to cause other issues eg dementia, cancers.
I suspect your FT3 is low, highly likely to be caused by impaired T4 to T3 conversion
If so this can be treated with a little T3
I doubt they have checked FT3
If not they need to be persuaded to do so asap!
For good health every cell/ T3 receptor in the body must be flooded with T3 by way of a constant and adequate supply....I doubt this is happening.
Doctors don't understand this
Have you optimised Vit D, Vit B12, folate and ferritin....essential to support thyroid function....and thyroid antibodies TPO and Tg to check for Hashi's
These nutrient levels must be tested
Did you follow testing protocol?
If not results will be unreliable
At 9am
24hrs after last levo dose
At least an hour away from food and drinks
If the dose is wrong for you improvement is unlikely
You need to insist that FT3 is tested because high FT4 is a potential problem...however if you took your levo close to testing it could return a false high
Until you have a full thyroid test, taken in the correct conditions it's almost impossible to be sure what is going on....it's your GP's responsibility to investigate this.
They should also be considering your symptoms....make a list
Come back with your results, including reference ranges, and we will be able to advise
I've temporarily lost my link to the ThyroidUK website...grrrr!!....I'll come back and add related links later....sorry!
Testing protocol was followed ✔️
I’m being told my ferritin vitD folate are all normal ✔️
Thyroid blood result listed at the Top
Copied
So no FT3
That result is crucial
thyroiduk.org/signs-and-sym...
Think I’m right in saying they don’t routinely test for that?! What can I now insist on?? Given I have been unwell since Xmas, very symptomatic including losing a lot of hair and an increase in meds, I’m still showing Abnormal
No they don't, but given your problems an endo might be prepared to test
You could try asking for a referral on the grounds that your current medication isn't helping and you are concerned about the potential problems of well over range FT4
Otherwise, you can test privately as many of us do.
You have been given the link to private testing by SlowDragon....all info there
Your FT4 is well over range so that should alert them to action...you are taking far too much levo and it's fairly clear that it's not converting well.
I was unwell for17 years before I discovered it was the levo that was making me unwell....I has just assumed that doctors had the answers
They don't!
So you either need to prersuade your GP that you need to have both FT4 and FT3 tested
Or....
you need to have a private test
It's not difficult..what is difficult is the ignorance of many doctors.
Good luck tomorrow....use the information you've gained on the forum to argue your case
Thank you! Prior to my last 2 blood tests I have always been on a dose of 200 levothyroxine and my results have been normal or satisfactory, So I just don’t understand why such a big change. I’m half expecting a further increase in meds will be suggested to me tomorrow and feel quite scared.
You are under no obligation to accept a dose increase if you feel it is wrong for you
"Patient Autonomy" lays this out and was explained to me by an understanding GP when I opted to go off-piste and self medicate with high dose T3.
Doctors are not there to dictate( though some seem to think they are) they are tasked with listening to the patient (though again some of them forget this)
A doctor would be irresponsible to raise your dose further given your over range FT4
You have grounds for a referral to an endo
Don't be afraid of the appointment, doctors are flawed human beings like the rest of us they are not god-like creatures to be worshipped and obeyed!!! Some need to remember that!!
Put on your "big girl knickers" and politely show them you mean business.
The standard of thyroid care beggars belief it's so poor.
Your concerns must be heard.
Oh....and I suggest you make a list of the things you wish to say/ ask as an aide-memoire......that stopped me sqawking like a demented parrot when I started my thyroid journey many years ago... and knew nothing!!
She wants a decrease in the levothyroxine from 225 back to 200 daily and have another blood test done in a weeks time. She states I’m now overactive rather than under?!
My ferritin is low at 9 , she states it should be between 10-91 and before she treats she wants me to do a FIT kit (faecal test) as if she starts to treat now, it can ‘mask’ the next results. Then Depending on the stool test results, I may have to have a camera to investigate?!
My VitD is also inadequate at 32 so I need to start taking that. All other tests are okay.
Thoughts please?
She states I’m now overactive rather than under?!
No! You are over replaced / over medicated with T4 ....not overactive. Hypothyroid! A common mistake in the use of terms
verywellhealth.com/too-much....
But....If you were "overactive" you would be hyperthyroid....a different issue, see link
thyroiduk.org/if-you-are-hy...
I'm afraid this medic seems clueless, another example is this...
She wants a decrease in the levothyroxine from 225 back to 200 daily and have another blood test done in a weeks time.
She should not be testing a week after a dose change....the gap is usually 6/8 weeks because the new dose has to settle first in the system. Test results after 2 weeks will not give a reliable reading.
If her testing has been along these lines in the past that may explain part of your problem.
So yes, reduce to 200mcg levo but insist on waiting for 6 weeks before testing again
Vit D....is she prescribing this? . Ideally combine vit K2 with vit D this ensures the calcium in the body reaches the hard tissues ( bones and teeth) rather than soft tissues ( arteries)
The others have replied re remaining nutrients...
This is the first time I have seen this particular Doctor, and to be honest she seemed a lot better than the previous one! She has also taken an opinion from a senior GP and both want the repeated blood test in a week AND will also test for Zinc levels. She’s adamant regarding the bloods so I don’t want to get into an argument. I’m certain I’ll have to repeat the blood test again (like you say 6 weeks)
At this point I feel overwhelmed with it all.
Exactly what were the vitamin results with reference ranges?
Have you changed how you take yoru Levo?
That’s the thing.. I haven’t been given any reference ranges for the vitamin results. Just told all are normal… I expected to be able to see a list of results given they tested for quite a lot = Vit D, B12, Ferritin, Folate, Folic acid, and Zinc
I haven’t changed how I take my Levo at all. First thing in the morning on an empty stomach between 6am and 8am with water and don’t eat for at least 3 hours later.
Can you check your NHS app for them? They should be there.
What your GP says is normal likely isnt optimal.
They aren’t there. Which is odd I know. So I was just told over the phone! There is something showing though that means nothing to me .. ?! A test for serum total protein level (which I have no idea about) and Bone profile. I did have a FBC also done.
Ask GP reception where the results are and get a printed copy from them.
So I’ve been to the docs this morning.
She wants a decrease in the levothyroxine from 225 back to 200 daily and have another blood test done in a weeks time. She states I’m now overactive rather than under?!
My ferritin is low at 9 , she states it should be between 10-91 and before she treats she wants me to do a FIT kit (faecal test) as if she starts to treat now, it can ‘mask’ the next results. Then Depending on the stool test results, I may have to have a camera to investigate?!
My VitD is also inadequate at 32 so I need to start taking that. All other tests are okay.
Thoughts please?
Once you've finished the vit D prescription from GP you will need to buy your own and continue to supplement, otherwise your level will just fall back to where it is today.
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.grassrootshealth.net/projec...
A ferritin of 9 is very low indeed. She will prescribe an iron tbalet which should be taken 4 hours away from Levo and preferably with orange juice or anything with vit C to help it absorb better.
I'm not sure of the details of the FIT stool test, looks like a cancer screen which is probably standard in certain age groups.
A blood test in a weeks time is too soon. 6-8 weeks is usual minimum. You do seem to be over replaced so how much has she suggested you drop your dose by?
What about B12 & folate results? Did you find them out?
Vit D I have purchased from the pharmacy as that’s what she suggested.
She hasn’t prescribed any Iron yet, as wants the stool test done firstly! I did say another blood test in a weeks time is surely too soon, but she wants to see what the levels are as stated they could be adjusting all of the time! She’s decreased Levo from 225 back to 200.
She said my B12 is a little high but that’s because I have the B12 injections every 3months , my score was 1352.
Folate is 11.8 which she said is fine
What strength vit D did you buy? Ideally you should also take K2 and there are supplements that contain both D3+ K2.
You likel need a minimum of 3,000iu.
I didnt realise you have B12 injections. In that case its recommended to take a B complex to help keep all the B's in balance. That would also cover you for folate and your folate level isnt optimal at 11.8.
B complex suggestions: Slightly cheaper options with inactive B6:
amazon.co.uk/Liposomal-Soft...
Contains B6 as P5P an active form:
bigvits.co.uk/thorne-resear...
healf.com/products/basic-b-...
Explanation about the different forms of B6:
helvella.blogspot.com/p/hel...
B complex comparison spreadsheet:
healthunlocked.com/thyroidu...
I went into my local Chemist today and the pharmacist didn’t know what I was talking about when I asked for vit D with K2, said he’d never heard of it or ever been asked for it! I told him my reading and he says 1,000iu Would be sufficient! I am gobsmacked. I thought these professionals were reliable!
I will visit somewhere bigger like Boots or Holland & Barrett and hope for better.
Thank you
You might find the Better You 1,000iu per spray D3+K2 in one of those. The high street isn't the best place to be looking for supplements. The best ones are found online.
Many professionals have'nt studied nutrition.
So I need a BComplex and Vit D 1,000 or 3,000 ? I’m confused
Yes one of the B complex's I mention. They are high dose and you likely wont find them on the high street.
This is the D3+K2 that many people do well with. 1 spray is 1,000iu, so 3 sprays per day under the tongue.
amazon.co.uk/BetterYou-D300...
Thank you so much! Am I still okay to also take a multivitamin alongside these and the B complex?
You shouldn't need the multi. What you will be taking is much better.
She wants a decrease in the levothyroxine from 225 back to 200 daily and have another blood test done in a weeks time. She states I’m now overactive rather than under?!
My ferritin is low at 9 , she states it should be between 10-91 and before she treats she wants me to do a FIT kit (faecal test) as if she starts to treat now, it can ‘mask’ the next results. Then Depending on the stool test results, I may have to have a camera to investigate?!
My VitD is also inadequate at 32 so I need to start taking that. All other tests are okay.
Thoughts please?
Everywhere I read - when my ferritin was down at 22 - stated that no thyroid hormone works well until ferritin is over 70 :
so this likely the reason why you can't utilise the T4 tablets and your readings not consistent nor logical when you have dose increases in T4.
I now supplement and maintain ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500 ++ ) and vitamin D around 125.
I had to have a colonoscopy and endoscopy before I was prescribed an iron supplement -
Once I had the 'all clear ' I asked for an iron infusion but refused -
I think you should ask for an iron infusion as this ferritin level so low- it took me over a year to build my level back up and not with the NHS iron tablets as they were too harsh and made my symptoms much worse.
There is a liquid T4 - maybe this might solve the problem in the short term if appointments are backed up for any further investigations to rule out more serious reasons as to why your ferritin is so low.
When hypothyroid we can have low stomach acid and a slowed stomach, gut and bowel, and have trouble extracting and digesting key nutrients from our food irrespective of how well and clean we eat and why even when optimally medicated with thyroid hormone replacement you may well need to maintain these core strength vitamins and minerals,
Would they do an iron infusion without doing a colonoscopy and endoscopy?
No - I doubt it - the cause of your iron deficiency anaemia needs first to be investigated and anything more sinister rules out -
trouble is I think some of these services backed up and you may wait longer than usual.
Could I not just start taking Iron supplements to see how things improve? Really dread the thoughts of the camera procedures ..
No - and you can ask to be ' knocked out ' so you don't feel a thing.
But this may not happen - first off you are having to do FIT test which I'm guessing is some sort of stool sample and that maybe all that needs to happen.
Yes, it’s a stool sample. 🙏 all is well. I am petrified.
It's quite normal and most probably 90% of us start off our thyroid journeys having to improve our core strength vitamins and minerals - we have low nutrients because we we are hypothyroid and why the thyroid hormone replacement does not work and your blood tests make no sense.
Onwards and upwards - as now we have found out a crucial piece of information which now makes everything else make sense.
I’m not starting my thyroid journey, I’ve had an UAT for 19 years. All my blood tests have always been fine except the last two 🥲
Ok - but this is your thyroid journey on this forum and where we all start off when on thyroid hormone replacement and not feeling well and feeling the need to find help from other people who are, or have been in a similar situation.
I understand. Just feeling very emotional. Thanks for all your teplies.
SlowDragonAdministrator
so previous post here
healthunlocked.com/thyroidu...
Showed very under medicated
What are your new test results TSH, Ft4 and Ft3
Did you test correctly, early morning and last dose levothyroxine 24 hours before test
Are you now taking a daily vitamin B complex daily as well as B12 injections
ESSENTIAL to test vitamin D, ferritin and folate
Why are you taking Lansoprazole
VitD, folate, ferritin ✔️ I’ve been told all Normal (but haven’t actually been given my levels! )
Tested as per protocol✔️
I’ve been told Lansoprazole isn’t an issue as long as you leave a good 4hours between taking that & levothyroxine- I take occasionally as get heartburn.
Posted my Thyroid blood results.
I’m so fed up and confused.
Copied
So you are legally entitled to copies of vitamin test results
So that’s first step
Exactly what vitamin supplements are you taking
Low vitamin levels very common on levothyroxine due to low stomach acid, which results is poor nutrient absorption
Heartburn is a hypothyroid symptom, usually due to LOW stomach acid
Any PPI like Lansoprazole is to treat high stomach acid
Any PPI like Lansoprazole will also tend to lower vitamin levels even further
gov.uk/drug-safety-update/p...
webmd.com/heartburn-gerd/ne...
pharmacytimes.com/publicati...
PPI and increased risk T2 diabetes
gut.bmj.com/content/early/2...
Iron Deficiency and PPI
medpagetoday.com/resource-c...
futurity.org/anemia-proton-...
onlinelibrary.wiley.com/doi...
sciencedirect.com/science/a...
NHS will only test and treat vitamin deficiencies
on levothyroxine we need GOOD vitamin levels
Low vitamin levels frequently results in poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
Vitamin D at least over 80nmol and between 100-125nmol may be better
Serum B12 at least over 500
Active B12 at least over 70
Ferritin at least over 70
Folate near top of range
Latest Test results show Ft4 is significantly over range
Essential to test TSH, Ft4 and Ft3 together see where Ft3 is
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Just TSH, Ft4 and Ft3 test - £32
monitormyhealth.org.uk/thyr...
10% off code here
thyroiduk.org/testing/priva...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/testing/priva...
Thank you for all that!
I only take a multi vitamin.
I don’t understand that at 200mcg dose of levothyroxine you thought I was very under medicated, now at 225 (increase was only in last 7 weeks) DIPPYDAME thinks I’m taking way too much 🤷♀️
I have a GP appointment tomorrow and will ask for a referral 🙏
Bearing in mind my March results were abnormal and now my results from June 28th are also abnormal
Abnormal but expected literally means just that. In this case as the TSH is under range/suppressed they would expect a FT4 over range and vice versa. Sometimes they may add that Levothyroxine dose is to high.
It’s not the most useful of blood tests commmts. But, it is very literal.
A referrel to endocrinology would most likely be bounced back if GP referred until your levels are back in range.
Doing a private test for FT3 may aid your understanding, but it is unlikely to influence GP/medics view on treatment.
You tested only after 7 weeks, so bear in mind that as the weeks go on on your current dose your levels could decrease or increase further while the dose stabilises some more.
Meanwhile, with a suppressed TSH and quite an high over range FT4 I would decrease your levothyroxine immediately as most likely your FT3 is probably going to be over range too anyway.
Good luck.
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