Underactive Thyroid: Hi everyone, I'm on... - Thyroid UK

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Underactive Thyroid

clatow23 profile image
clatow23

Hi everyone, I'm on levothyroxine for an underactive thyroid and wanted to ask should my vitamin levels be checked?

I've read a few posts on here with people advising others with underactive thyroid to get a vitamin levels blood test?

I've never had my vitamin levels checked, only TSH

101 Replies
SeasideSusie profile image
SeasideSusieAdministrator

clatow23

Yes, get vitamins checked - Vit D, B12, Folate and Ferritin.

If you've read the posts on here about them you will have seen that optimal nutrient levels are needed for thyroid hormone to work properly.

GP may not do them, certainly Vit D is difficult to get done with GP. If necessary we have recommended private labs who can do these tests.

Hi Susie, Thank you for your reply. I've been on levothyroxine for about 2 years now - would it be weird to ask GP now out of the blue to test vitamin levels?

My last TSH just last week was 1.9

With private labs, I'm guessing they migh the quite expensive. I'm unemployed currently so have limited funds. Are any of the vitamin tests easy to get the GP to do?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

Some GPs are amenable to testing vitamins, others not. One way to get around it is to say something like

"I've been talking to ThyroidUK, the thyroid charity recommended by the NHS for information about thyroid conditions, and they mention that lack of certain vitamins and minerals can cause thyroid deficiency and if you have thyroid deficiency, the vitamins you are taking in are unable to be processed properly. As they recommend that good levels of Vit D, B12, Folate and Ferritin as very important, would you please arrange for me to have these tested".

Here is the information on ThyroidUK's main website:

thyroiduk.org/role-of-vitam...

If GP wont test then the cheapest way is one of the private labs as a full thyroid/vitamin bundle.

Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...

Check this page for details of any discounts: thyroiduk.org/getting-a-dia...

This is sometimes on offer on a Thursday, it was yesterday and was discounted to £68, it may be a few weeks before this offer comes around again

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...

Check this page for discount code thyroiduk.org/getting-a-dia...

Thriva also do a vitamins with iron profile for £55 but I don't find their website very user friendly and they have a strange way of displaying the results which confuses many members:

thriva.co/tests/TP51QA

My last TSH just last week was 1.9

Just testing TSH isn't sufficient, it doesn't give a picture of thyroid status. TSH is not a thyroid hormone, it's a signal from the pituitary (Thyroid Stimulating Hormone) to tell the thyroid to make hormone if it detects there's not enough. FT4 and FT3 are the thyroid hormones, the most important of which is FT3. T4 is a storage/pro-hormone which has to convert to T3 which is the active hormone that every cell in our bodies need. It's the FT3 result which shows if we are optimally medicated or over or under medicated.

The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. So your TSH is a little on the high side. How do you actually feel? Are you well and free of symptoms? If so then it would seem that a TSH level of 1.9 is fine for you. If not then it would be a good idea to have TSH, FT4 and FT3 all tested at the same time.

Thank you. I will go try that route with the vitamin levels

Regarding the TSH, I sort of feel ok but then other times I wake up from a sleep and still feel I've not slept. I get light headed sometimes but have put that down to my high blood pressure. To be honest, because I've suffer with anxiety and depression I never really know if what I feel like is normal if that makes sense?

The other thing I notice is I get a lot of stray hairs on my clothes, seems to be far more than other people

With the full thyroid panel is it extremely difficult to get GPS to test that?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

To be honest, because I've suffer with anxiety and depression I never really know if what I feel like is normal if that makes sense?

I fully understand. I have other medical conditions which can have symptoms difficult to distinguish from hypothyroid symptoms, so if I am more fatigued than normal it could be my thyroid, my heart or my lung disease, so for me my thyroid test results are important in helping me know whether or not I need to adjust my thyroid meds or not.

The other thing I notice is I get a lot of stray hairs on my clothes, seems to be far more than other people

We all lose dead hair on a daily basis but hair loss can be a Hypo thing so you could be undermedicated, it's also connected to low vitamins and in particular ferritin. What about when you wash your hair. I have a Dossil (sink plug strainer) which I use in the shower

lakeland.co.uk/21976/Dossil...

and it's surprising how much hair it stops going down the plug hole, I would have a blockage very quickly if I didn't use it.

With the full thyroid panel is it extremely difficult to get GPS to test that?

It can be but the GP can ask for TSH, FT4, FT3 and thyroid antibodies but it's the lab that makes the decision as to what to test. If TSH is in range many labs wont test anything else. Some labs routinely test TSH and FT4. The hospital lab that does my GP test includes FT3 if TSH is suppressed.

When I wash my hair, I definitely block the plug hole. My dad's had the plunger out a lot

Is the easiest way then to try and get the GP to test vitamin levels and the go private for the full Thyroid panel?

Also, if any vitamin levels come back out of range. Who treats them? The GP?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

Is the easiest way then to try and get the GP to test vitamin levels and the go private for the full Thyroid panel?

Just ask the GP for everything to start with. See what he can do. Whatever is missing we can point you in the right direction for the cheapest way to test them.

Also, if any vitamin levels come back out of range. Who treats them? The GP?

If there are any deficiencies then GP should treat. If low levels but within range GP is not obliged to treat and we usually have to sort that out ourselves.

Thank you

I've actually just looked back through my blood tests and back in In 2019 they tested my T4 and reported satisfactory, no further action

The results I got then were

TSH 2.1

T4 19

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Clatow23

Without a reference range it's impossible to interpret your FT4 result, but your TSH was too high back then.

Thank you. Sorry for all the questions but I have a couple more -

Firstly, I'm trying to lose weight but it's happening so slow

Secondly, my HDL Cholesterol is below the recommended range. Total Cholesterol is 4.6 - not sure if that is a bit high?

Could the TSH of 1.9 be contributing to either of those, and would I notice any improvement if it was down to 1 ?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Clatow23

I can’t help with cholesterol question I'm afraid but as I said previously just testing TSH is inadequate, you need FT4 and FT3 as well, all done from the same blood draw. Low T3 makes weight loss difficult so you need to look at the whole thyroid picture.

Thank you :) Lastly - if FT3 came back low I'm just seeing that we have to buy T3 ourselves as GPS don't prescribe it. I definitely couldn't afford to purchase T3 being unemployed- can it be fixed with an increase in Levothyroxine?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

GPs can't initiate a prescription of T3, only an endo can do that, the patient has a trial of 3-6 months and if the endo considers the patient should stay on T3 then the GP takes over prescribing.

You would only need T3 if you don't convert T4 (the storage/pro hormone) to T3 (the active hormone which every cell in our bodies need). If you don't convert well enough then there's no way extra Levo is the answer, you're just adding more T4 which wont convert to T3.

But you're jumping the gun. First of all you need all those tests mentioned above - full thyroid panel plus the vitamins. Post the results, including reference ranges, when you have them and we'll take it from there.

Hey Susie, have a phonecall with GP later to see if they will test Vitamin LevelsOn an interesting side note, although it was before I became hypothyroid I had a blood test in 2011 and my Inorganic Phosphate level was a bit low 0.65 [0.80 - 1.45] which can from what I've read be linked to Vitamin D deficiency and inadequate minerals. Although nothing was said about it at the time

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Sorry, I don't know anything about that, I don't think I've ever seen that on a print out of any of my results.

Hi Susie, thought I'd let you know that GP has agreed to test my Vitamin levels. Have a blood test on Tuesday

I also wanted to ask, would it be possible to experience the "brain fog" common in an underactive thyroid, even if the TSH is 1.9 and in range?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

Good to hear your GP will do the vitamin tests, hopefully they'll all be done (Vit D is sometimes refused), post results and ranges on the forum when you have them for comment.

I also wanted to ask, would it be possible to experience the "brain fog" common in an underactive thyroid, even if the TSH is 1.9 and in range?

Yes. TSH is not telling you your thyroid status, it's the FT4 andFT3 that do that, you could be quite hypothyroid with that TSH.

Hi Susie, had my Vitamin Blood test at GP today. Do you know out of interest how long results from Vitamin tests through GP usually take?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

Sorry, no, I've never had mine done with GP other than once one was popped on the list without my knowledge (ferritin or B12 I think), the whole raft of tests resuts were back within a couple of days.

Hi Susie, so I have my vitamin results back

Serum Folate 3.5 ng/ml [> 3.9]

Serum Vitamin B12 540 ng/l [197-771]

Vitamin D 16 nmol/L [> 51]

They want to repeat the folate test, but the vitamin D even though it's low says no further action

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

Oh dear, how much proof do they want, I despair 🙄

Serum Folate 3.5 ng/ml [> 3.9]

Below range but ....

cks.nice.org.uk/anaemia-b12...

Folate level

◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.

◦However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.

So not diagnostic of folate deficient but suggestive. If it comes back below 3 next time they should prescribe folic acid. If not below 3 they may just say buy your own supplement. So come back with new result when retested and we'll take it from there.

**

Vitamin D 16 nmol/L [> 51]

but the vitamin D even though it's low says no further action

Your GP is being negligent and not following guidelines.

You have Vit D deficiency and your GP needs to treat this with loading doses of D3 - see (and show your GP) the following:

NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d...

(click on Management > Scenario:Management)

"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.

* Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

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 these 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. 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 - and then you'll need a maintenance dose 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. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. These wont be prescribed, you will have to buy them 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.

For Vit K2-MK7 I like Vitabay and Vegavero brands - you wont find them at your local pharmacy or high street health shop, you can get them on Amazon and Ebay.

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, no necessity if using an oral spray.

When you buy your own D3 the avoid tablets as they are the least absorbable, go for either a D3 oil based softgel (eg Doctor's Best which contains only D3 and extra virgin olive oil to aid absorption) or an oral spray (eg BetterYou but this contains a lot of excipients).

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

**

Serum Vitamin B12 540 ng/l [197-771] - ng/L is the same as pg/ml

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 to at least 450 pg/ml 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."

So you are a little low with this. A good quality B Complex such as Thorne Basic B or Igennus Super B will help here but as it contains methylfolate (folic acid) I'd not start this yet in case you get folic acid prescribed.

**

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

**

What about Ferritin? Was this tested?

Hi Susie, if my GP wants the folate repeated, would that suggest he may well treat it if it's a similar level to the 3.5 next time? Otherwise, wondering why he would want it repeated?

With the Vitamin D, do I wait until my blood test on Friday and see if that is tested again and if not, then bring it up with him?

The B12, I have put on the page above 540 ng/l

Ferritin I did ask for, but for some reason wasn't tested, so not sure if I need to ask about this again?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

if my GP wants the folate repeated, would that suggest he may well treat it if it's a similar level to the 3.5 next time? Otherwise, wondering why he would want it repeated?

I think I've explained that in my reply above. Your result is suggestive of folate deficiency but not diagnostic, so he's repeating it to see if it comes back as deficient next time and if it does he should prescribe folic acid. Whether he will treat if it's over 3 I can't say, he's not obliged to.

With the Vitamin D, do I wait until my blood test on Friday and see if that is tested again and if not, then bring it up with him?

I doubt Vit D test will be repeated, they don't like doing it and say it's an expensive test. I don't think there's any doubt that you have Vit D deficiency, it's not borderline, it's definitely deficiency as it's so far below the cut off level. So ask for loading doses and follow my suggestions above.

The B12, I have put on the page above 540 ng/l

Yes I saw that after I submitted my reply so I edited it to address this above.

Ferritin I did ask for, but for some reason wasn't tested, so not sure if I need to ask about this again?

You definitely need ferritin tested.

I'd also ask for thyroid antibodies to be tested, as suggested in reply to your first post on the forum a year ago. Low nutrient levels often accompany autoimmune thyroid disease (known to patients as Hashimoto's and is the most common cause of hypothyroidism), raised antibodies confirm Hashi's.

Thank you Susie,

As I understand it with the Vitamin D - the GP should prescribe a loading dose. I know you mention a maintenance dose - is that something the GP should prescribe and keep me on?

With the Ferritin, would you say to wait until my next blood test or try and speak to the GP about it before then?

Also, would the GP be likely to test thyroid antibodies if I ask about that? If I gave him the reason of the low nutrients accompanying autoimmune disease, would this be enough?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

I know you mention a maintenance dose - is that something the GP should prescribe and keep me on?

I have covered this in my reply above:

Most doctors, if they continue prescribing, only give 800iu daily which isn't enough. ...........

Most GPs only prescribe until level is within the "sufficiency" category, ie 50-75nmol/L, we then have to buy our own and maintain level ourselves. GPs tend to prescribe far too low a dose for a maintenance dose, as mentioned above.

With the Ferritin, would you say to wait until my next blood test or try and speak to the GP about it before then?

Ask if you can have one at the same time as your folate test, it will save you extra trips to the surgery.

Also, would the GP be likely to test thyroid antibodies if I ask about that? If I gave him the reason of the low nutrients accompanying autoimmune disease, would this be enough?

He may or may not, all you can do is ask.

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

GP should definitely prescribe LOADING dose vitamin D

That’s 300,000iu in total over 6-8 week prescription

Ideally vitamin D should be tested again at end of the course and you will definitely need ongoing maintenance dose vitamin D, everyday after that

NHS Guidelines on dose vitamin D required

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

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

Some areas will prescribe to bring levels to 75nmol or even 80nmol

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

pubmed.ncbi.nlm.nih.gov/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 NHS postal kit

vitamindtest.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

amazon.co.uk/BetterYou-Dlux...

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-...

Web links about taking 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...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking Do you always get same brand levothyroxine at each prescription

Obviously with such low folate and vitamin D this suggests under medicated....and/or poor gut absorption

Have you had thyroid antibodies tested?

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Extremely important to get iron and ferritin levels tested

Ask for full iron panel test for anaemia

As your vitamins are terrible you need coeliac blood test too

clatow23 profile image
clatow23 in reply to SlowDragon

Hi Slow Dragon,

I'm currently on 100mg levothyroxine and as far as I am aware, it is the same brand

As of yet, I've not had thyroid antibodies checked. I'm going to see if I can speak to the GP about this

Regarding full iron panel -that is different than just folate I'm guessing?

At the moment, all the surgery have done is booked a repeat blood test for Folate. Could only speak to the receptionist about adding Ferritin on and no idea if the GP would do a full iron panel yet or not

It was so much easier when you could book an appointment to discuss with GP, I guess I could still do this as they are taking appointments again now

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Just replied on an old post

TSH of 2.8 2 years ago showed you needed dose increase in levothyroxine back then

Low vitamin levels are direct result of being under medicated and still hypothyroid

Low vitamin levels tend to result in very poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Poor conversion of Ft4 to ft3 tends to lower TSH

Just testing TSH is completely inadequate

If GP won’t test more than this at annual reviews you need to test FULL thyroid and vitamins via Medichecks or Blue horizon

Obviously vitamin levels have been dropping for months

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

Poor gut function with Hashimoto’s is extremely common

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

clatow23 profile image
clatow23 in reply to SlowDragon

Appreciate all the help from you guys. I have actually been experiencing light headedness for quite a while now, and I wonder if that could be down to the low vitamin levels

Would it be worth me trying to get an appointment with my GP to discuss everything? Take printouts with me of advice from you guys etc

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

I would get prescribed vitamin D

Get folate retested before starting on any B vitamins

Test for coeliac too

Get full iron panel test for anaemia (via Medichecks if GP unhelpful)

When was thyroid last tested

Ask GP for full thyroid testing including thyroid antibodies, Ft4 and Ft3

Make sure you get tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

GP rarely understand interconnection between gut and thyroid or gluten

clatow23 profile image
clatow23 in reply to SlowDragon

Thank you - it's mainly the receptionist that are being so unhelpful. Asked about ferritin and full iron panel and all they have said is GP wants Folate repeating

If I go for the repeat blood test on Friday, would it be worth getting an appointment with GP to ask about the full iron panel etc

I also asked receptionist about the Vitamin D and all she said is GP put no further action as the comment. So I'm wondering if it's best to ask for an appointment

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Make appointment with GP

Do not ask receptionist

When see/ speak to GP

Request

Prescription for folic acid for low folate

Prescription for vitamin D deficiency

Be ready with NHS guidelines to show GP should be prescribing vitamin D at loading dose

Request ferritin test or ideally full iron panel test for anaemia

Coeliac blood test

Thyroid testing including thyroid antibodies

clatow23 profile image
clatow23 in reply to SlowDragon

Thank you - regarding asking for folic acid for low folate - if I understand what Susie said my GP might not prescribe it if it's over 3? Mine was 3.5

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Serum Folate 3.5 ng/ml [> 3.9]

The range on your test meant it’s below range at 3.5

If they won’t you can self supplement with a good quality daily vitamin B complex, one with folate in (not folic acid) may be more beneficial than just folic acid

This can help keep all B vitamins in balance and will help improve B12 levels 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

IMPORTANT......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...

clatow23 profile image
clatow23 in reply to SlowDragon

Thank you - have a phone appointment with the GP this afternoon

Last question with the Vitamin D - as I understand it GP should provide a loading dose? And then a lifelong maintenance dose if I have read NICE correctly?

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

GP should prescribe loading dose

You are likely to need to retest levels at end and self supplement to maintain optimal vitamin D

NHS often only prescribes to bring vitamin D to 50nmol

That’s not high enough level. Optimal vitamin D is at least around 80nmol.

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

Regarding full iron panel -that is different than just folate I'm guessing?

Folate is a B vitamin and nothing to do with iron. An iron panel tests Ferritin, Serum Iron, Transferrin Saturation % and Total Iron Binding Capacity - all iron related and will show if you have iron deficiency.

To know if you have anaemia you need a full blood count. Besides Iron Deficiency Anaemia there is B12 Deficiency Anaemia, Folate Deficiency Anaemia, plus many others.

Ah, thank you that makes it more clearer. Funnily enough, it actually looks like a full blood count has been requested by GP

Just to double check, does a full blood count include the iron panel or is the iron panel separate to a full blood count?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Full blood count doesn't include an iron panel, it will show as FBC on the request form and includes

White cell count

Neutrophil, lymphocyte, monocyte, eosinophil and basophil counts

Red blood cell count and red blood cell distribution width

Platelet count

Haemoglobin estimation

Haematocrit

Iron panel would be listed separately.

Thank you - so although it looks like my GP has requested a FBC. Ask him for a full iron panel too?

With the Vitamin D I'm so worried that the GP treat it and then also about having to purchase maintenanxe dose as I am unemployed so don't have an income, and am single so no one to rely on

Do some GPS prescribe the maintenance dose of Vit D?

Part of what doesn't help me is that I have a huge wasp phobia so come the summer where everyone else is getting sun -I'm not because I don't go out unless I have to. And if I do go out I have to cover up because of my phobia

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

Ask him for a full iron panel too?

Unlikely to get this unless there's a particular reason. Ask for ferritin, if ferritin is very low then you could ask for an iron panel to see if you have iron deficiency.

Do some GPS prescribe the maintenance dose of Vit D?

This has been covered above. IF a GP will prescribe a maintenance dose, and he is not obliged to once your level is in the sufficiency category, it will be a very low dose, not enough to maintain a good level and your level may fall again. D3 is not an expensive supplement. I buy a good quality, clean (no excipients) oil based softgel (Doctor's Best) and can get a year's supply for my high maintenance dose (5,000iu) for £16.99. If you only needed 2,000-2,500iu as a maintenance dose you could take a 5,000iu dose alternate days so it would cost you £16.99 for 2 years supply.

You would need the cofactors - Vit K2-MK7 and magnesium and can look for best prices for these. My K2-MK7, the best form and a good brand, cost me £11.48 for 240 days' supply.

Hi Susie,

So GP phoned - He said he didn't think there was much point in repeating the folate test. Apparently my folate and Vitamin D are only a tiny bit low

He is sorting out some supplementation to bring those levels back up. And a full blood count

Don't think was too keen ti doing Ferritin so may have to get this done myself

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Come back with new post once you get prescription

GP’s are notorious for only prescribing 800iu daily

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Cheapest option for vitamin D probably this one

Better You vitamin D 3000iu

One spray = 3000iu

amazon.co.uk/dp/B00AWNART4/

Better You vitamin D with vitamin K2 (ideally)

But is more expensive (as only last 1/3rd the time as one spray is 1000iu )

amazon.co.uk/dp/B007DIJJ0O/

clatow23 profile image
clatow23 in reply to SlowDragon

Hi, thank you. GP has prescribe folic acid and a vitamin D supplement

Also, he's requested a FBC, Coeliac Screen, Ferritin blood test and bone profile

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Do you know how much vitamin D has been prescribed?

clatow23 profile image
clatow23 in reply to SlowDragon

Hi, it says 50,000unit

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Good

clatow23 profile image
clatow23 in reply to SlowDragon

Looks like it says for 6 weeks, then a blood test to check calcium levels

Would that be it as far as GP is concerned at the end of the 6 weeks?

SlowDragon profile image
SlowDragonAdministrator in reply to clatow23

Yes they want to check that calcium doesn’t go too high

With vitamin D deficiency calcium levels will naturally be low. As vitamin D levels improve calcium levels with naturally increase.

So On high dose vitamin D supplements they need to recheck calcium

They might (if you’re lucky) retest vitamin D levels

humanbean profile image
humanbean in reply to clatow23

GP has prescribe folic acid and a vitamin D supplement

How much folic acid has been prescribed?

clatow23 profile image
clatow23 in reply to humanbean

Hi, he has prescribed 5mg Folic Acid. Should that be enough?

humanbean profile image
humanbean in reply to clatow23

Yes, that's standard for folic acid/folate deficiency.

clatow23 profile image
clatow23 in reply to humanbean

Thank you - am I correct in that according to NICE Guidlines I'm supposed to have a Full Blood Count 7-10 days after starting the Folic acid?

humanbean profile image
humanbean in reply to clatow23

Sorry, I don't know.

Hi Susie,

So the FBC I assume that is to check for anemia with the low folate?

However, I've seen a few things people can check such as the inside of bottom eyelid if the edge of it is red and not pale, mines red. And also nails apparently, mine don't look pale

Can someone still be anemic with normall coloured eyelids and fingernails?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Clatow23

So the FBC I assume that is to check for anemia with the low folate?

The FBC will show if there is anaemia.

Whether or not it's folate deficiency anaemia or any other type I can't say. As I said above, there are many types of anaemia.

However, I've seen a few things people can check such as the inside of bottom eyelid if the edge of it is red and not pale, mines red. And also nails apparently, mine don't look pale

Can someone still be anemic with normall coloured eyelids and fingernails?

I remember as a child (in the 1950s) when we had real doctors, family doctors who knew you and were interested in you, they had a routine of checking inside bottom eyelid, looking at nails, checking pulse and other things every time you went for whatever reason. I haven't had that done in donkeys years. Doctors don't seem to look at people any more nor take their symptoms into account, they only seem to be interested in numbers and if you fit within the range then there's nothing wrong with you.

I think there's more to diagnosing anaemia than just looking at the inside of eyelids and fingernails.

Thanks Susie - the main reason I asked was I didn't want to waste the GPs time looking for anemia if it could be determined by physical signs

My hands are warm and look pink, eyes pink and nails etc

Obviously I have 3.5 folate reading, although he said it wasn't that low

Just have bit of anxiety if they aren't "that low" that I'm taking up time someone else might really need

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Didn't your GP offer the FBC, you didn't ask for it? If so I wouldn't worry, he must have a reason for doing what he's decided to do.

He's decided you have folate deficiency otherwise he wouldn't have prescribed folic acid.

You have Vit D deficiency which is blindingly obvious yet he said it was "a tiny bit low".

Maybe he's now realised that there are problems and he wants to take a closer look. Don't look a gift horse in the mouth, you are getting far more investigations than most people who have to beg for them and he certainly wouldn't be letting you take up time someone else may need.

Thank you, yes I got a text from the surgery saying they wanted to repeat the folate test. Then after speaking to GP he has added on FBC, Colieac and Ferritin

So with the low Folate - it is possible there may be stuff that might show up in the FBC? Even if hands are always warm and no paleness

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

So with the low Folate - it is possible there may be stuff that might show up in the FBC? Even if hands are always warm and no paleness

I don't know. You could just have folate deficiency. You could have folate deficiency anaemia. Just wait and see, it's not possible for anyone to say until your tests have been done.

Hey SeasideSusie , just thought I would let you know my FBC came back already, but was "Normal, no further action"

Not sure why, but Ferritin, Bone Profile & Coeliac results not back yet

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Ask for print out of your test results and post them on the forum, along with their reference ranges, when you have them all.

Those that aren't back yet might just be that it's a case of they take longer to process.

SeasideSusie I've actually got the results on NHS app with all the ranges. All fall in the ranges - is it still worth posting them if so?

@

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Yes, post them. Some may be borderline and when we see them all together there may be some clues. Wait until you have the others though.

SeasideSusie Will do. Regarding the Vitamin D & Folic Acid which have been delivered by the chemist today, would you say it's safe to start taking them now? Or wait until I have my other results

Just hoping GP knows what he's doing with the Folic Acid. NICE Guidelines say a FBC should be done 7-10 days after starting treatment for Folate deficiency and also at 8 weeks along with iron and folate.

Although, someone from the surgery replied earlier and said because folate is slightly under the normal limit there's no need to do that

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Clatow23

Only start with one supplement, give it two weeks then if no adverse reaction add in the second supplement, give it two more weeks and if no adverse reaction add the next supplement. Continue like that and if you do have any reaction you will know what caused it. Don't forget that you will need D3's cofactors mentioned above, you will have to buy those yourself.

As your Vit D level is severely deficient you might want to consider starting with that, it's up to you.

If you are concerned about the retesting of your Folate level then you could point out what the guidelines say to your GP. If the "someone from the surgery" was not a GP then they are not qualified to comment.

Thank you SeasideSusie - I so much appreciate all of the help from you guys

No idea who sent me the message from the surgery, whether they spoke to the GP or not from the wording. The message said:

Due to folate level slightly under normal limits, there is no current need for any blood tests, other than the ones already requested by the G.P, however the results will be reviewed. If any further concerns please contact us again.

I'm not sure whether you could look at this screenshot I have attached and see would it be wrong of me to go by that with a slightly under normal deficiency

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

It depends whether you are officially classed as deficient or low I suppose. What level is classed as deficient in that article?

But if you are prescribed folic acid it seems sensible to monitor you anyway.

So this is basically what it says, although I don't really understand it

Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.

However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.

If there is a strong clinical suspicion of folate deficiency but normal serum levels, red cell folate can be measured once cobalamin deficiency has been ruled out.

A red cell folate level below 340 nanomol/L (150 micrograms/L) is consistent with clinical folate deficiency in the absence of vitamin B12 deficiency.

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

OK, so I knew the first bit as I pointed out to you that you were in the indeterminate zone at 3.5 according to what information I had saved. So looking at the next bit

If there is a strong clinical suspicion of folate deficiency but normal serum levels, red cell folate can be measured once cobalamin deficiency has been ruled out.

A red cell folate level below 340 nanomol/L (150 micrograms/L) is consistent with clinical folate deficiency in the absence of vitamin B12 deficiency.

It would seem that your GP has decided to treat you for deficiency without having results of those other tests.

In any event, monitoring should be carried out when prescribing, otherwise how does your GP know whether your levels are improving or not and when you have reached a level where you no longer need the high dose of folic acid prescribed.

Now, that is exactly my thoughts when I got the message through saying no monitoring was needed, other than what the GP has requested. Like you say how would they know if it's improving if they don't. The only blood test requested is a calcium one in 6 weeks because of the Vitamin D dose

So it definitely wouldn't be unreasonable of me to say I know it's only slightly under, but as I'm being treated with folic acid, would you be able to follow the NICE Guidelines on monitoring whist being treated with folic acid?

I always get worried as I suffer with anxiety that I'm being unreasonable- but it's like I've been given 84 folic acid tablets taking me up to July, with no mention of even monitoring the effects of them

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

I think it's entirely reasonable for you to request a follow up test when you get near to the end of your course of folic acid. I would request a test to be done a week before so that gives time for the test results to come back and a new prescription issued if needed.

Thanks Susie, going to make a note of that so I remember

Just hope I can start to get some of my symptoms sorted soon

Its probably not really brain fog but I'm on 2 different blood pressure pills atm, and the one I take in the afternoon I get to the evening and can't remember if I have taken it or not. And I'm thinking at 30 yo, I should remember that

Bowels are up and down, sometimes I go and it's ok and then other times like just now it can be like water. I believe that can be a symptom of Coeliac, which is one test result I am waiting on

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Maybe something like this will help with remembering your tablets. It's what I use. My morning tablets are put in one and are on my bedside table with a glass of water to take before I get up. I also put my afternoon tablet in one and set my phone alarm so I always remember to take it

amazon.co.uk/Sistema-Dressi...

SeasideSusie Hi, Susie. Just thought I'd let you know, my Ferritin came back out of range- GP phoned this afternoon. 18 mg/nl [30 - 150]

Not a fan of liver, but I do eat meat most nights, red meat at least twice a week. Sometimes more.

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Clatow23

What is your GP doing about your dire Ferritin level?

He should be doing an iron panel to see if you have iron deficiency and a full blood count to see if you have anaemia. This has been mentioned above, have these tests been done?

SeasideSusie FBC came back but doesn't show anemia. He's not mentioned doing a full iron panel, but has prescribed Ferrous Sulphate (sp?).

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

When on iron tablets you should be monitored regularly to make sure your serum iron doesn't go too high and it should be a full iron panel.

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

In all people a serum ferritin level of less than 30 mcg/L confirms the diagnosis of iron deficiency.

(mcg/L is the same as mg/nl)

Work your way through all the headings, make a note of anything you think relevant and follow it up. It would seem that your GP leaves an awful lot to be desired, I'm actually wondering how he managed to qualify, or perhaps he just wants an easy life and does nothing until challenged.

Hi SeasideSusie , so where you've put in all people a serum ferritin level of less than 30 mg/l confirms the diagnosis of iron deficiency anemia - does that mean with a ferritin level of 18 mg/L I do have iron deficiency anemia? Just wondering as my FBC was all in range, with normal Haemoglobin 138 [115 - 165].

Do I need to ask him for a full iron panel before starting the ferrous sulphate? No idea if he would do one, and deffo can't afford a private one at present

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

clatow23

so where you've put in all people a serum ferritin level of less than 30 mg/l confirms the diagnosis of iron deficiency anemia - does that mean with a ferritin level of 18 mg/L I do have iron deficiency anemia?

I am not diagnosing, I am simply quoting from the NICE guidelines. 18 is less than 30 so NICE is saying yes.

What were your MCH, MCHC, MCV, Haematocrit?

It's up to you if you ask for the iron panel, I'd want one.

Thank you SeasideSusie

I'm not sure if it helps, but the values were:

MCH 28.9 [27 - 32]

MCV 89 [80 - 100]

Hematocrit 0.422 [0.36 - 0.47]

MCHC - not sure on this as wasn't included

Should the GP know that when on iron tablets level should be monitored regularly with a full iron panel? Only thing mentioned was retesting at the end of the 3 months

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

OK, so those results don't suggest anaemia but I can't explain why NICE guidelines say what they do about a level of 18 confirming iron deficiency.

Should the GP know that when on iron tablets level should be monitored regularly with a full iron panel? Only thing mentioned was retesting at the end of the 3 months

I seriously doubt your GP actually knows anything. Read the link about iron deficiency, click on the different headings, somewhere in there it should mention when testing should be done, possibly under Management or Monitoring, when you've found it point it out to your GP to make sure he sticks to the guidance.

Thank you SeasideSusie - I think actually reading it says levels below 30 mg/L confirm iron deficiency. But doesn't say iron deficiency anemia

Regarding the guidance it's a bit confusing on the monitoring side as it's under the heading monitoring for iron deficiency anemia

I know you're not medically trained, but would you say that provided the GP monitors, with my Ferritin level of 18 mg/L it's safe to take the ferrous sulphate?

SeasideSusie profile image
SeasideSusieAdministrator in reply to clatow23

Yes, you're right, I've done so much research on this my brain is scrambled. I will edit to correct this.

I'm afraid I can't say anything about ferrous sulphate other than I would ensure you are regularly monitored with a full iron panel. You need to ensure your serum iron doesn't go too high too much iron is toxic.

No problem at all SeasideSusie e Your research is great. It helps so many :)

I'll look into the iron panel - do you think with my Ferritin level as it is that the GP would agree to this? I definitely couldn't afford it privately as I'm unemployed.

One interesting point - it says in that NICE link on iron, about testing for Coeliac which a different GP did request and I'm just awaiting the results of. I found out tonight that my grandma had Coeliac - not sure if this would make it more likely I might have it?

nellie237 profile image
nellie237 in reply to clatow23

Yes it does make it more likely

clatow23 profile image
clatow23 in reply to nellie237

Thank you nellie237 - would you say it's worth mentioning to my GP that I have a relative who had Coleiac? Also, I'm not sure if you would know, but can a Coleiac blood test take a bit longer than other tests to come back? All my others done on Friday are now back, but Coleiac isn't yet

nellie237 profile image
nellie237 in reply to clatow23

Yes, it does take a bit longer - mine took a couple of weeks. I would suggest you wait on the result. If it comes back negative or weakly positive, you should definitely mention it.

Edit: You need to continue eating gluten until told otherwise.

clatow23 profile image
clatow23 in reply to nellie237

Hi nellie237 could I ask, can you have Coeliac even if your calcium levels are normal?

nellie237 profile image
nellie237 in reply to clatow23

Hi Clatow 23,

Yes, blood calcium levels are very well controlled by very complex processes that I have not tried to understand. Basically if there isn't enough calcium in the blood, your body will take it from elsewhere (like your bones) to keep blood levels stable.

My calcium levels were normal at diagnosis, but like you I was very low on Iron, Folate, B12 & Vit D.

clatow23 profile image
clatow23 in reply to nellie237

Thank you so much nellie237 - regarding the B12, do you think that level would still be low enough for Coeliac? I got 540 ng/L [197 - 771]

Nice changed the Ferritin threshold for confirming Iron deficiency last month (Apr 2021) ......up from 15 to 30. About bloody time in my opinion.

Oooh, that B12 result is good. I still think that Coeliac is a distinct possibility for you.

clatow23 profile image
clatow23 in reply to nellie237

nellie237 I do also have GERD which if I'm right can be a symptom, always thought it was from eating my food too fast. Bowels are very up and down too - I had put that down to IBS which I'm on tablets for. And then my dad tells me my grandma had Coeliac

Do you take PPI's?

clatow23 profile image
clatow23 in reply to nellie237

Hi nellie237

Just thought I would let you know my Coeliac test came back negative:

Tissue transglutaminase IgA level 3.1 CU [0.0 - 20.0]

SlowDragon profile image
SlowDragonAdministrator

Request thyroid levels are tested including Ft4 and Ft3 plus thyroid antibodies 6-8 weeks after you add last vitamin supplements and make dietary change to gluten free diet

So you are on high dose vitamin D

Folic acid

Ferrous fumerate

Look at trialing strictly gluten free diet in few weeks time

Don’t make too many changes at once or you can’t see what’s helping or not

Typically should add one supplement or make one dietary change at any one time

Always do thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Aiming for Ft4 and Ft3 at least 50-60% through range

Typically TSH will be around one or lower when adequately treated

Low vitamins strongly suggest under medicated

Hi clatow23,

You would probably find going GF helpful. Also be aware that negative now doesn't always mean it will stay that way. I tested negative in 2007 , but positive last year.

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