So after 3 phone calls to my endocrinologists secretary for a copy of my bloods taken in November , I have finally managed to get them. Even though I asked for full bloods this is all that I have been sent, so beggars can’t be choosers I suppose.
Could someone give me a bit of advice on how these are looking please.
I had RAI 3 years come May/June and I am taking 50 mcg of Levo.
Thank you in advance.
Kimkat
I am taking 50 mcg of Levo.
TSH: 6.29 (0.3-5.0)
You were undermedicated at that time. Has your dose of Levo been increased? You needed an extra 25mcg and retest 6-8 weeks later. Or are you still taking only 50mcg Levo?
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper parts of their reference ranges, if that is where you feel well.
I had my levo increased earlier after asking for it myself. I intend to speak to the secretary again and hopefully get another increase asap.
Kimkat
Ferritin is very low in range, it's recommended to be half way through range. If not already done I would ask for an iron panel to see if you have iron deficiency and a full blood count to see if you have anaemia. We shouldn't supplement with iron tablets unless these are done.
Folate is recommended to be at least half way through range, yours is on the low side and would be better at 11+ with that range. Consider a good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B, this will raise your folate level and will also help improve your B12 level which is only just about OK and would be better around 900-1000ng/L 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 (or ng/L) to at least 450 pg/ml (or ng/L) 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 (or ng.L)."
When taking a B Complex this should be left off for 7 days before any blood test (including thyroid) as it contains Biotin and if the lab also uses Biotin in it's testing procedure (which most labs do) then it can give false results.
You need vitamin D tested too
Test twice yearly via
vitamindtest.org.uk
What vitamin supplements are you currently taking
You’re currently very hypothyroid
Dose should be increased to 75mcg daily and bloods retested 6-8 weeks later
Was dose increased?
Likely time for next test if was
What brand of levothyroxine are you currently taking
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/medications-f...
Teva poll
healthunlocked.com/thyroidu...
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.
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).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
I realised that there’s no Vit D after I sent my message, so annoying as I specifically asked for full range. I take the Betteryou Vit D spray, I also take my Levo in the middle of the night as otherwise my other meds would interfere with it. Mercury pharma works best for me as the others give me 24/7 headaches. I didn’t expect to get a T3 but I will ask when I ring back and probably make a nuisance of myself, the secretary did say that the consultant will ring me at some point but I won’t hold my breath.I can’t understand the way that the results have been typed if I’m honest, with all of the in brackets numbers, are they my previous results ? And what is the triangle in front of my TSH, would you happen to know?
I assume the Triangle in front of TSH means it’s too high and/or has gone up
So when test was done .....how long before test was last dose levothyroxine ?
Ft4 is too low, should be around 19-20 minimum
Presumably you had 25mcg dose increase in levothyroxine
Ferritin is terrible.
Did endocrinologist organise full iron panel test for anaemia.
Are you currently taking any iron supplements
Are you vegetarian or vegan
I always delay my Levo prior to blood tests ass as you have advised previously, I had my tests at 8.30 then immediately took my Levo afterwards, I had delayed my previous dose by 4 hours so that it wasn’t too messed up.
My last increase of Levo was around 11-12 weeks before this test.
I’m not vegan or veggie and no I’m not taking any iron supps, as I was hoping to discuss this with the endo but my December telephone consultation was yet again cancelled, I’ve got so many questions to ask him when I eventually do get to talk to him but not much chance at the moment.
He should have contacted you and increased levothyroxine by 25mcg
Also should have organised full iron panel test for anaemia and vitamin D test
Generally pretty useless
Is this NHS or private?
Email Thyroid UK for list of recommend thyroid specialist endocrinologists.......NHS and Private
tukadmin@thyroiduk.org
Ask your GP for dose increase in levothyroxine.
Also full iron panel test for anaemia and vitamin D testing
This is NHS but I’m seriously considering going privately, I just don’t feel as if he takes that much notice of me and he’s a stickler for nhs guidelines so my guess is that he’s sticking to the tsh reading too rigidly. I’m going to ring again tomorrow, to request extra bloods at my gp surgery but I do expect them to put me off, if so I’ll ring the endo again if that’s the case. I think he’s more of a diabetic consultant so I’ll be looking into a thyroid specialist I think. Thank you for your advice, very informative as always.
Roughly where in the U.K. are you?
Many private endocrinologist are doing consultations on zoom
I live in Lancashire near Blackpool
Also I assumed that my blood test was a full one so expected a more comprehensive result including iron, look like I’ll have to arrange my own.
Had a bit of good news this morning. I had a telephone appointment with a GP from my surgery, (not my usual one) about an eye problem and while I was on the phone I managed to have a chat with him about my recent bloods from November and asked if he would kindly consider increasing my Levo from 50 to 75mcg and he agreed 🎉 I actually couldn’t believe that he listened to my problems and took them onboard 🙂, so I will shortly be collecting my extra meds, so we will see how it goes in the next few weeks. He also asked me to make an appointment for bloods around 6-8 weeks and he will check my vits etc at the same time, so fingers crossed and I may just start making my future appointments with him.
Great result!
Which brand of levothyroxine are you currently taking?
Make sure to stick to same brand as dose increases
Many people find Levothyroxine brands are not interchangeable.
See you like Mercury Pharma, they do 25mcg tablets
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...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
Meanwhile look at improving low ferritin yourself by increasing iron rich foods in diet
Low iron and/or low ferritin frequently linked to hair loss
Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask for full iron panel testing for Anaemia
Never supplement iron without doing full iron panel test for anaemia first
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Post discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Also get vitamin D tested
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
I’m waiting for my endo to come back with the VitD result and cholesterol, also asked for T3 but I’m not holding my breath. I had a full hysterectomy over 20 years ago so no more heavy periods but I did used have them. And I try to eat iron rich foods regularly.
So low ferritin likely will improve as levothyroxine dose is increased upwards
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose, especially as you have had RAI
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Thanks for that SD I have started my iron spray and rather than have four sprays per day I have started with two so I’ll probably keep it at that until my next bloods. I have moved from 25 to 50mcg in ten months so as you can appreciate my endo is dragging his butt somewhat. At least my GP realised that my tsh has risen since the previous results which is a bonus, so I’m hopeful for the future with him 🤞🏼
A few people have found trying iron spray doesn’t increase iron levels much
humanbean and SeasideSusie may pop along with info on best ways to improve iron levels
Kimkat
I found that the iron spray didn't improve my ferritin but did affect the rest of the iron panel. It was an experiment, I didn't do it for long but used 4 sprays per day and didn't finish the whole of the bottle. This is what happened:
Ferritin went from 57.1 to57.4
Serum iron went from 47.91% through range to 64.49%
Saturation went from 30.33% through range to 35.38%
As your ferritin has barely scraped into range, and low ferritin can suggest iron deficiency or iron deficiency anaemia, I can only repeat what I said in my original reply:
If not already done I would ask for an iron panel to see if you have iron deficiency and a full blood count to see if you have anaemia. We shouldn't supplement with iron tablets unless these are done.
If iron tablets are found to be necessary then your GP should be monitoring your levels regularly.
Iron tests should be done after a 12 hour fast (water is OK) so early morning before breakfast would be the most convenient time.
Been waiting for my result from medichecks and I’ve just found them in my junk, so this was taken on 2nd February, since then I have convinced my GP to give me an increase of Levo so I started on an extra 25mcg a couple of weeks ago, so I’ll be having bloods done in another 4-6 weeks.
Bloods should be retested 6-8 weeks after each dose increase
So you are now currently taking 75mcg levothyroxine?
Which brand of levothyroxine are you currently taking
Do you always get same brand
Likely to need further increase in levothyroxine after next test
Unless very petite dose of levothyroxine is pretty much always at least 100mcg per day
Folate was too low
Are you now taking daily vitamin B complex (with folate in, not folic acid)
Remember to stop taking vitamin B complex a week before ALL blood tests, as biotin can falsely affect test results
You might wish to take separate folate in week before test to help maintain folate levels
Ferritin obviously far too low as well
Hopefully improving with increasing iron rich diet
Yes I’m taking 75mcg now, always take the same brand, no B vitamins yet. Which ones would you advise are the best? And is ferritin iron?
Are you currently taking any B12 supplements or have B12 injections?
No none at all, my GP has never mentioned my levels.
Not taking any multivitamins?
Improving low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will keep B12 levels up too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
I don’t take a multivitamin but I do take vit D spray, vit C and iron. If I’m honest I don’t understand hashimotos, can you have hashi if you don’t have a thyroid? It confuses me a little. Thank you for the links.
Sorry no ...you don’t have Hashimoto’s
But low vitamins are common on levothyroxine especially when under medicated
Being hypothyroid leads to low stomach acid and this causes poor nutrient absorption and low vitamins as result
Maintaining optimal vitamin levels by supplementing helps improve how levothyroxine works
Just thought I would mention that I have been taking omeprazole for years due to having a really sore throat, my only symptom, I was diagnosed as having acid reflux which in turn was burning my throat. However I have read that taking it over a long period of time isn’t good so I stopped taking it 3 weeks ago to see if my throat is affected and at the moment it’s fine. I still take gaviscon advance prior to going to bed. Do these preparations affect Levo and vitamin absorption?
Yes terribly
Most hypothyroid patients have LOW stomach acid
Omeprazole is a PPI used to treat high stomach acid
High and low stomach acid have virtually identical symptoms but extremely different treatment
Thousands of posts on here about low stomach acid
healthunlocked.com/search/p...
Web links re low stomach acid and reflux and hypothyroidism
nutritionjersey.com/high-or...
articles.mercola.com/sites/...
thyroidpharmacist.com/artic...
stopthethyroidmadness.com/s...
healthygut.com/articles/3-t...
naturalendocrinesolutions.c...
Protect your teeth if using ACV with mother
healthunlocked.com/thyroidu...
Ppi 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
Yes ferritin is the storage form of iron
You can have low ferritin and high iron....so can’t assume iron is low just because ferritin is low
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first
Post discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
How low iron can tend to lower TSH healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
Oh wow I have some reading to do. I feel as if I’m doing a Phd in medicine 😂 so grateful for this information.
You will soon know far more than your GP (or endocrinologist)
Unless very petite......Likely to need further increase in levothyroxine after next test.....or certainly in few months
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
Oh gawd, I’ve just ordered and received two iron sprays after someone on here recommended them. I’ll take onboard what you have said and I just may arrange for a full blood test for my own peace of mind. Thank you
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