hello lovely and wise people: an update after my... - Thyroid UK

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hello lovely and wise people

ElephantShrew profile image
16 Replies

an update after my previous post (and thankyou to everyone for such wise and supportive advice, it helped so much - bit emotional to be honest)

I got an appt with my registered GP and, all credit to him, the first thing he said before i even raised it was that he thought i needed my medication increasing, so i did not need my big girl pants :) [or not this time]. So i am now on 50 microg levothyroxine til January when i get reviewed again and i'm going to stick with him for any future appts. I asked about a full iron panel and vit d test but he has instead gone for a b12/folate/ferritin/FBC test and vit d - i guess if you start again with a new Dr they have to start from scratch.

I got my results this morning and they are:

(looks like the lab forgot to do the B12 test but results from Aug were Serum vitamin B12 level 208 ng/L [150.0 - 900.0]

)

B12/folate level

Serum folate level 4.1 ug/L [3.1 - 19.9]

Serum ferritin level 21 ng/mL [11.0 - 306.8]

Serum 25-Hydroxy vitamin D3 level 21.8 nmol/L

<25 nmol/L: Vit.D deficiency, requires replacement

25-50 nmol/L: Vit.D insufficiency, consider

replacement

50-150 nmol/L Adequate Vitamin D status

Full blood count

Total white blood count 5.8 10*9/L [3.7 - 11.1]

Red blood cell count 4.44 10*12/L [3.8 - 4.9]

Haemoglobin concentration 135.0 g/L [110.0 - 150.0]

Haematocrit 0.390 l/l [0.36 - 0.46]

Mean cell volume 87.8 fL [80.0 - 101.0]

Mean cell haemoglobin level 30.4 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 346 g/L [290.0 - 360.0]

Platelet count - observation 281 10*9/L [150.0 - 450.0]

i think the FBC doesn't look as though i have anaemia? although from reading it sounds as though b12 and iron deficiencies have effects in opposite directions so could they kind of cancel out?

My folate is even lower than the results in August :(. i didn't need to fast for the Aug tests but did fast for this test, so maybe that one breakfast in August has caused this difference.

I waited to start the B & b12 supps til after the blood tests so have only just started these. i have been eating more meat and pate and broccoli - trying to eat a healthy diet is an ALARMING amount of food, i hadn't realised how much less i had been eating due to no appetite and tiredness - but it sounds like any changes in diet will all take some time to have any effect. Now i've got the results i need to book another appt with my Dr to talk about the results, I think he is guaranteed to treat the vit d deficiency in some way as it's clearly outwith the range & I'm wanting to see what his take on the other results are. I think i'll go for a private iron panel test if the surgery won't opt for this.

The test results have made me feel a bit weird - there's something about actual numbers which gets past the everyday-just-having-to-get-on-with-what-you-need-to-do to ok-i-am-a-little-bit-unwell. On the bright side in the last week i have felt hungry sometimes & had a tiny amount of get-up-and-do-things so am feeling a bit of improvement :).

i just keep thinking about how many women just think their symptoms are normal aging process and never get checked, or what used to happen historically, before levothyroxine existed (I read a thing about chewing bits of pig's thyroid???).

Anyway (sorry, have been on the wine :)) I hope you're all doing well out there.

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16 Replies
HashiFedUp profile image
HashiFedUp

Are you now on vitamin D supplement from your GP? Its crucial esp with covid 19?!

ElephantShrew profile image
ElephantShrew in reply to HashiFedUp

i am now! :) I didn't know about the connection with covid19 so am especially glad i had this tested

Lora7again profile image
Lora7again

I think your ferritin is too low when mine was low I was losing loads of hair and felt dreadful. I took Spatone and ate pate twice a week to bring it up to over 80. Also 50mcg of Levothyroxine is just a starter dose so hopefully it will be increased by 25mcg in January after your blood test. Come back here and post your new levels then so members can advise you. I hope you enjoyed your wine I usually have a couple of large glasses of Pinto Grigio blush at weekends as a treat. 😀🍷🍷

ElephantShrew profile image
ElephantShrew in reply to Lora7again

thankyou! I hadn't heard about spatone, i may try this out. I did enjoy the wine :) i know it's not ideal mid week but some days require wine! 👍

(also i didn't have emojis turned on before, that's much better

😎)

humanbean profile image
humanbean

from Aug were Serum vitamin B12 level 208 ng/L [150.0 - 900.0]

B12 needs to be a minimum of 500 ng/L, but better still would be top of range or even 1000ng/L. Supplement with 1000mcg per day methylcobalamin for a couple of months.

Serum folate level 4.1 ug/L [3.1 - 19.9]

Optimal for folate is top half of the range i.e. approx 12 - 20. Supplement with 1000mcg per day methylfolate for a couple of months.

Serum 25-Hydroxy vitamin D3 level 21.8 nmol/L

Your level is severely deficient. Optimal is about 100 - 150 nmol/L. Supplement dose of vitamin D3 can be calculated using this link :

grassrootshealth.net/projec...

If I assume that your weight is 140lbs (10 stone) and you don't currently supplement vitamin D3, then it gives the following results :

------------------------------------------------------------

All suggested intake amounts are based on a weight of 140 lbs

Maintenance Dose

To achieve the desired serum level within approximately 3 months, a supplementation amount of

4,000 IU* (100 mcg) per day (this includes your current intake amount)

will be sufficient for 50% of people to achieve the desired serum level of 100 nmol/L

or

6,000 IU* (150 mcg) per day (this includes your current intake amount)

will be sufficient for 90% of people to achieve the desired serum level of 100 nmol/L.

Loading Dose

To quickly achieve the desired serum level within days†, a dose of

25,000 IU (625 mcg) per day can be taken for 8 days, followed by the above maintenance dose.

*Values rounded to the nearest 1,000 IU and are capped at a maximum of 10,000 IU/day.

†This calculation is based on published data by van Groningen et al., Eur J Endocrinol., 2010

Hundreds of peer-reviewed scientific studies have documented the well-established safety of single 'loading' doses of vitamin D to get levels up quickly (1-26). Loading doses ranging from 100,000 IU to 600,000 IU have been shown to rapidly increase vitamin D levels, but fail to sustain levels longer than 2-3 months. Larger doses induce more rapid breakdown of vitamin D (1-2). Therefore, the customized loading dose has been divided into doses of 25,000 IU over a number of days to achieve the initial increase in vitamin D levels. The maintenance dose is your custom daily dose recommended to achieve and sustain the desired levels of vitamin D.

-----------------------------------------------------------

There are co-factors required for the body to make best use of vitamin D3 : vitamin K2 and magnesium. SeasideSusie writes on the subject quite frequently. Look up her replies to others here :

healthunlocked.com/user/sea...

i think the FBC doesn't look as though i have anaemia? although from reading it sounds as though b12 and iron deficiencies have effects in opposite directions so could they kind of cancel out?

I agree, your results don't show anaemia, which is determined by your haemoglobin level and yours is well within range.

MCV (Mean Cell Volume) increases when someone is low in B12, and decreases when someone is low in iron. Put both problems in the same body and MCV can look normal.

I waited to start the B & b12 supps

What have you bought and what dose are you taking?

You need to take a B Complex on top of any B12 and folate supplements to cater for low levels of the other B vitamins. Eventually you should be able to take B Complex alone, or possibly with the addition of B12 and folate a couple of times a week.

ElephantShrew profile image
ElephantShrew in reply to humanbean

Thankyou!! I hadn't understood at all how they worked out the anaemia - just that it was connected to the FBC - so am really glad to know more about that.

I have the B supps recommended by SlowDragon - ingennus super b complex (folate 400mcg, 900mcg methylcobalamin) and jarrow methyl B12 (1000mcg methylcobalamin). It sounds like i should maybe stick with the super b complex for now so as not to overload on B12, & maybe find something with more folate in the short term.

I have just been to pick up my vit D prescription and it is 50,000 iu invita D3 once a week for 6 weeks.

i'm wondering a bit how to include the magnesium and vit K2 - unless i eat a lot of wholemeal toast/nuts at the same time as the vit D! - so will go read through SeasideSusie's posts for ideas.

I find the way the Drs treat the ranges really weird: apparently my folate & ferritin are "entirely fine and normal" because they're in range (even if they're within 5% of the end of range) whereas my vit D is treatable because it's a tiny amount outside range. Maybe it's a cost thing: that the nhs has to spend money on treating it if it's outside range so they're very careful what they say is deficient? <shrugs emoji> if i can treat it myself with supps then maybe that's all fair enough but i'm so glad this forum is here for advice!

thankyou so much :)

SlowDragon profile image
SlowDragonAdministrator in reply to ElephantShrew

Yes...correct

NHS ONLY tests and treats deficiencies

If result is just 1 point within range.....it’s considered “normal “

On levothyroxine we need optimal vitamin levels

Vitamins are low BECAUSE You are under medicated

Hypothyroidism causes low stomach acid and as direct result low vitamin levels

helvella profile image
helvellaAdministratorThyroid UK in reply to ElephantShrew

The amount of B12 you swallow has little to do with how much you absorb. If you have an issue such as Pernicious Anaemia you can't absorb B12 and need injections. But if not, you are likely only to absorb at most 13 micrograms a day.

Many of us can take 1000 micrograms of B12 a day with no issues at all. So there is little or no reason to cut down on B12. Most obviously because your last test result was very low.

You just might find the article below (and the full paper which you can access) interesting and/or useful.

The normal range: it is not normal and it is not a range

1. Martin Brunel Whyte

2. Philip Kelly

Abstract

The NHS ‘Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ‘normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ‘reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding.

dx.doi.org/10.1136/postgrad...

pmj.bmj.com/content/94/1117...

ElephantShrew profile image
ElephantShrew in reply to helvella

thankyou! i was worried about the B12 amounts because added together my supps add up to nearly 2000 microg B12 which sounds like a lot - had it drummed into me when young not to take too much supps! - but i guess it's different with the malabsorption problems from hypothyroid.

I'm trying to get my head around how to work with the malabsorption: would i absorb more if i spread b supps out through the day rather than taking several at once? (avoiding 4 hours within levo dose)

or my vit d prescription: i've got 50 000 iu to take once a week, but this is a lot of vit d all at once - which i might not absorb much of - and i'm wonderign whether to supplement it with a daily dose.

(am about 12 stone so vit d calculator says 5000-7000/day, which is about my prescription, provided i absorb all of it)

also thankyou for paper link! am still reading. There is so much to learn!

humanbean profile image
humanbean in reply to ElephantShrew

I find the way the Drs treat the ranges really weird: apparently my folate & ferritin are "entirely fine and normal" because they're in range (even if they're within 5% of the end of range) whereas my vit D is treatable because it's a tiny amount outside range.

Some ranges are simple i.e. there is a bottom and a top, and any result within those two numbers is considered "entirely fine and normal" by doctors.

There are some ranges which are more complicated e.g. for vitamin D

Serum 25-Hydroxy vitamin D3 level 21.8 nmol/L

<25 nmol/L: Vit.D deficiency, requires replacement

25-50 nmol/L: Vit.D insufficiency, consider replacement

50-150 nmol/L Adequate Vitamin D status

So, with that range anything over 50 is "Adequate", but anything from 25 - 50 is "insufficient" and anything under 25 is "Deficient". I don't want a vitamin D level which is insufficient and I doubt you do either. Your level needs to be raised from roughly 22 to over 50 (according to the NHS, which makes many decisions based on economics, not good health) i.e. more than double to even be adequate. But just getting your level to over 50 still isn't the same as saying it is optimal.

For vitamin D the optimal level (depending on source) is 100 - 150 nmol/L, or could be > 75nmol/L or could be 125 nmol/L.

One of the things that doctors get wrong is that they assume anyone with a level which matches the bottom of a range will be just as healthy and feel just as well as someone whose level is at the top of the range. But this simply isn't true.

Suppose you test ferritin for three patients and the reference range is 13 - 150 (one of the standard ranges for ferritin). Their results are :

Patient 1 : result = 13

Patient 2 : result = 82 (approx mid-range)

Patient 3 : result = 150

Patient 2 is likely to feel the most well and Patient 1 is likely to feel the least well. But doctors just look at the results (all within range) and assume all three patients are well. And this simply isn't true.

Another issue is that (in my opinion) doctors see a result for ferritin (for example) of

Patient 4 : result = 50 ; reference range is 13 - 400 (under 10% of the way through the range)

They will often say a result is fine but appear not to notice that the reference range is different to the standard one they usually see.

Another issue is that some doctors will look at a test result and reference range e.g. for ferritin again : Result = 10 (13 - 150) and they think to themselves "That's close enough" and leave the patient to rot.

ElephantShrew profile image
ElephantShrew in reply to humanbean

Thankyou! I wish they would indicate on the range where most people feel healthiest and advise on lifestyle ways to move towards that area, but i guess they can't do anythign which people might think implies the nhs will pay for it :(

>Another issue is that some doctors will look at a test result and reference range e.g. for ferritin again : Result = 10 (13 - 150) and they think to themselves "That's close enough" and leave the patient to rot.

ARGH :(

SlowDragon profile image
SlowDragonAdministrator

Serum 25-Hydroxy vitamin D3 level 21.8 nmol/L

Vitamin D is deficient and GP should prescribe LOADING DOSE of vitamin D

That’s 300.000iu over 6-8 weeks

5000iu per day for 8 weeks

Or 7000iu per day for 6 weeks

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

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 with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/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 via vitamindtest.org.uk

Or £29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk

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

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

With your Vit D, are you also taking it's 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...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

ElephantShrew profile image
ElephantShrew in reply to SlowDragon

Thankyou so much! He has prescribed precisely this: 300.000iu over 6 weeks & i am just starting today. One thing I am finding about this diagnosis is suddenly needing to put lots of dates into calendars! especialyl given how quickly i forget. Weekly to remind me about the vit D dose, 6-8 weekly for THS test, and then reminders to book in reviews of vitamin tests :)

i hadn't had any thoughts about how to get more magnesium & vit K2 yet but am really happy to see from this article that eating more cheese will help! :D & i will have a look for supps with magnesium.

thankyou so much!!

SlowDragon profile image
SlowDragonAdministrator in reply to ElephantShrew

We never recommend multivitamins

You can get separate vitamin K2

Eg

dolphinfitness.co.uk/en/hea...

Lots of different options for magnesium

All magnesium must be four hours away from levothyroxine

Calm vitality magnesium powder is cheap and easy to use. Good if you tend to have constipation. Best to start on low dose as too much can cause diarrhoea

Magnesium best taken afternoon or evening

Vitamin D tablets should also be four hours away from levothyroxine

ElephantShrew profile image
ElephantShrew in reply to SlowDragon

thankyou! there are a LOT of types of magnesium, it's really helpful to have a recommendation. (laxative effects noted :))

SlowDragon profile image
SlowDragonAdministrator

Make sure new prescription for 50mcg tablets is still mercury pharma brand

Bloods should be retested 6-8 weeks after EACH Dose increase

Standard starter dose of levothyroxine is 50mcg.

You are likely to need at least 2 more increases .....unless very petite

Vitamin levels are low because you are hypothyroid

Hypothyroidism causes low stomach acid and this results in poor nutrient absorption

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