PurpleNailsAdministrator4 months ago

Can you add ranges please? as ranges vary between labs.

Are these the results which concern you as low or high in range? 

Was anything else tested?   Eg FT4 free thyroxine.   Include any other results.

DonEstello in reply to PurpleNails4 months ago

Apologies, and of course.

Serum total 25-OH vit D level 50 nmol/L 50.00 - 200.00nmol/L

Serum TSH level - (SAI) - 0.54 miu/L 0.35 - 4.94miu/L

Serum ferritin - (SAI) - 85 ug/L 30.00 - 250.00ug/L

Serum vitamin B12 <148 ng/L 200.00 - 900.00ng/L

Serum folate 2.6 ug/L 3.00 - 20.50ug/L

Mean corpuscular volume (MCV) 105 fL 75.00 - 105.00fL

Mean corpusc. haemoglobin(MCH) 33.7 pg 26.00 - 35.00pg

Mean corpusc. Hb. conc. (MCHC) 320 g/L 290.00 - 350.00g/L

FT4 not tested only TSH.

It was a full blood count plus kidney and liver, bone, cholesterol, HbA1c, do you need these too?

Thank you

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PurpleNailsAdministrator in reply to DonEstello4 months ago

FBC need to be accessed in context of other markers eg haemoglobin & red blood cells for potential anaemia.  Im not very re this knowledgeable but those who are would likely need full results.

Was cholesterol or HBA1c abnormal?   Cholesterol can rise if thyroid low.  

Your TSH looks very good but unfortunately it’s not very reliable.  Doctors focus in TSH (a pituitary hormone).  The TSH signal the thyroid to produce hormone, if  assumed if its in range - so must thyroid hormones, but that’s always the case.

Many use private test to confirm FT4 & FT3.  FT4 can be good but to work well & convert to FT3 in your body, nutrients, often must be optimal.  Most should be at least half way through range to be optimal.  Within range is acceptable to doctor.  

Low FT3 can cause hypothyroidism symptoms even it FT4 very good. 

Monitor my health offer private fingerpick test for thyroid function  (discount available) Other companies offer options with thyroid antibodies & nutrients.  Antibodies are useful for diagnosis so not strictly necessary & you have recently had nutrients tested so I think I’d be arranging a basic function to check FT4 & FT3.      

thyroiduk.org/help-and-supp...

When you test it’s best to book draw early in morning, fast overnight (drink lots of water) delay levo until after draw. Avoid supplements containing biotin 3 days before (longer is high dose).

Biotin can interfere with testing process. 

This gives consistent testing - doctors aren’t taught to account for variations.  

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DonEstello in reply to PurpleNails4 months ago

Many thanks for this, my main concerns are the symptoms coupled with the symptoms and the response from the GP that bloods were acceptable.

HbA1c levl - IFCC standardised 35 mmol/mol 20.00 - 41.00mmol/mol

Serum cholesterol 6.1 mmol/L

FBC results are:

Total white cell count 9.4 10*9/L 4.00 - 11.0010*9/L

Haemoglobin estimation 147 g/L 115.00 - 165.00g/L

Platelet count 312 10*9/L 150.00 - 450.0010*9/L

Red blood cell (RBC) count 4.37 10*12/L 3.50 - 5.5010*12/L

Percentage hypochromic cells 4 %

Haematocrit 0.46 ratio 0.37 - 0.47ratio

Mean corpuscular volume (MCV) 105 fL 75.00 - 105.00fL

Mean corpusc. haemoglobin(MCH) 33.7 pg 26.00 - 35.00pg

Mean corpusc. Hb. conc. (MCHC) 320 g/L 290.00 - 350.00g/L

Red blood cell distribut width 12.9 % 11.00 - 15.00%

Mean platelet volume 6.6 fL

Neutrophil count 5.6 10*9/L 2.00 - 7.5010*9/L

Lymphocyte count 2.8 10*9/L 1.00 - 4.0010*9/L

Monocyte count 0.8 10*9/L 0.20 - 0.8010*9/L

Eosinophil count 0.1 10*9/L 0.00 - 0.4010*9/L

Basophil count 0 10*9/L 0.00 - 0.1010*9/L

Will arrange for FT4 & FT3 tests.

Thanks again

Dena

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PurpleNailsAdministrator in reply to DonEstello4 months ago

Well when things are out of range it’s shouldn’t be acceptable, that’s the point of a range. 

Is that Total Cholesterol ? Above 5 is high I think ?  Not certain, Doctor might suggest statins but investigate thyroid levels first.  

HbA1c measures the sugar attached to the haemoglobin, so it gives an average reading from past few months.  An average is said to be more useful than a random reading.  

Yours is not currently an issue, but if it increases doctors will say you can “reduce carbohydrates” in diet. 

HbA1c below 41 mmol/mol (6.0%): Non-diabetic

HbA1c between 42 and 47 mmol/mol (6.0–6.4%): Impaired glucose regulation      (IGR) or Prediabetes

HbA1c of 48 mmol/mol (6.5%) or over: Type 2 diabetes

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Sandiij4 months ago

Well B12 and folate are certainly not acceptable as both below range. Folate should be at top end of range . Under 3 I was prescribed 5mg folate.

DonEstello in reply to Sandiij4 months ago

Thank you Sandiij, I thought the B12 and folate didn't look acceptable.

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SeasideSusieAdministrator4 months ago

DonEstello

I'm wondering what planet your GP is from - does she have little wiggling antennae protruding from her head and purple skin with green spots?

What is very obvious and I would suggest that your GP is being negligent to have suggested these two results are "acceptable":

Serum vitamin B12 <148 ng/L 200.00 - 900.00ng/L

Your result is less than 148 which means that the testing equipment doesn't measure low enough to record your level. This should be screaming B12 deficiciency at your GP who should be doing further tests for B12 deficiency and pernicious anaemia.

You can check signs/symptoms of B12 deficiency here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you have any then list them to show your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

Serum folate 2.6 ug/L 3.00 - 20.50ug/L

Again this screams folate deficiency, see 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.

Please go back to your GP with this information and request testing for B12 deficiency/PA and treatment for your folate deficiency. The treatment for folate deficiency should be delayed until further testing of B12 has been carried out and B12 injections (which I think you may well need, if not then supplements) has been started.

Ferritin appears not to be too bad providing that there is no inflammation present. Was CRP (an inflammation marker) tested? Ferritin rises with inflammation so it's important to know if it's a true ferritin reading.

Serum total 25-OH vit D level 50 nmol/L 50.00 - 200.00nmol/L

This just within the "adequate" category but is low and needs supplementing.

You might want to check out a recent post that I wrote about Vit D and supplementing:

healthunlocked.com/thyroidu...

and you can check out the link to how to work out the dose you need to increase your current level to the recommended level.

If you would like further help with that please ask.

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these 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. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.

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.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Vitabay and Vegavero are either tablets or capsules.

Vitabay does do an oil based liquid.

Vitamaze is an oil based liquid.

With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.

They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.

If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form

natureprovides.com/products...

It may also be available on Amazon.

One member recently gave excellent feedback on this particular product here:

Here is what she said (also read the following replies):

healthunlocked.com/thyroidu...

Another important cofactor is Magnesium which helps the body convert D3 into it's usable form.

There are many types of magnesium so we have to check to see which one is most suitable for our own needs:

naturalnews.com/046401_magn...

explore.globalhealing.com/t...

and ignore the fact that this is a supplement company, the information is relevant:

swansonvitamins.com/blog/ar...

Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds. Vit K2-MK7 should be taken 2 hours away from thyroid meds. Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.

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.

DonEstello4 months ago

As Spike Milligan said 'I told you I was ill'!

Thank you so much for this, I thought I was going mad and was very unsettled by the GPs response and you may well be right about them being from a different planet.

Lots for me to take in from your post and I will look at all the links later today but I know I will go into the GP appointment on Friday suitably prepared.

BTW CRP wasn't tested.

Again, thank you so much for the detailed response, I greatly appreciate you taking the time to reply so comprehensively.

I will let you know how I get on with the GP.

D

SlowDragonAdministrator4 months ago

Just testing TSH is completely inadequate

You need TSH, Ft4 and Ft3 tested together

Do you always get same brand levothyroxine at each prescription

Low vitamin levels frequently results in poor conversion of Ft4 to Ft3

Low Ft3 results in lower vitamins

Spiral downwards

Deficient B12 and folate

Are you vegetarian or vegan?

cheapest option for just TSH, FT4 and FT3

£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/

DonEstello in reply to SlowDragon4 months ago

Hi there

Definitely don't have the same brand (currently the 100mcg tablet and 50mcg tablet are different brands).

No, I'm not vegan or vegetarian.

Thanks for the links.

Dena

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SlowDragonAdministrator in reply to DonEstello4 months ago

Have you noticed any difference between brands

Many people find different brands are not interchangeable

Teva brand in particular upsets many people

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

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (100mcg only) lactose free and mannitol free.

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

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

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

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

Posts that mention Teva

healthunlocked.com/search/p...

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.

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

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

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

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

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

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

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test 

Increasing numbers of members find it better to split levothyroxine as 2 smaller doses…..half dose waking up and half dose at bedtime

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

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SlowDragonAdministrator4 months ago

Do you know if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s, usually diagnosed by high thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

DonEstello4 months ago

Thanks for the reply, no I've never been tested for high thyroid antibodies so never had a diagnosis of autoimmune thyroid disease.

Many thanks for the links will look at getting additional testing done.

Thanks again for responding, it's much appreciated.

Dena

nellie2374 months ago

Hi DonEstello,

I am apalled by your GP's dismissive response to your very clear B12/Folate deficiency. With those results your GP should be recommending testing for Pernicious Anaemia and Coeliac.......... these are more likely if your Hypothyroidism is auto-immune, so not testing you for thyroid antibodies is not taking appropriate care.

"How should I manage people with confirmed vitamin B12 or folate deficiency?

If cobalamin levels are low, check for serum anti-intrinsic factor antibodies."

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

1.1 Recognition of coeliac disease

1.1.1Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

nice.org.uk/guidance/ng20/c...

I think that you might need to find a new GP.

DonEstello4 months ago

Hi Nellie

There seems to be a strong consensus that my GP/surgery has got this very wrong.

I will be using all the really helpful info and links to prepare myself for my next appointment on Friday.

Thank you for taking the time to reply, it is much appreciated.

D

DonEstello4 months ago

I've had some blood results from Medicheck (unfortunately didn't send enough blood to complete):

Thyroglobulin Antbodies (TgAb) 184.70 IU/mL (0 - 115) 160.6%

Thyroid Peroxidase Antibodies (TPO) 57.1 IU/mL (0 - 34) 167.9%

C-Reactive Protein (CRP) 0.52 mg/L (0.00 - 3.00) 17.3%

Vitamin D 73 nmol/L (50 - 250) 11.5%

Ferritin 91 ug/L (30 - 150) 50.8%

Vitamin B12 (active) 53pmol/L (37.5-188) 10.3%

Need to send another sample for Folate, TSH, fT3 &f T4

TSH & Folate from earlier blood test was 07/11:

TSH 0.53 mIU/L (0.35 - 4.94) 3.9%

Serum folate 2.6 ug/L 3.00 - 20.50ug/L. -2.3%

I've been taking Vitamin D supplements for 10 days now.

What are your thoughts? Does it look like my hypothyroidism is autoimmune (I've never been diagnosed as such)?

Many thanks

SlowDragonAdministrator in reply to DonEstello3 months ago

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

GP MUST

A) test for pernicious anaemia

Highly likely you need loading dose B12 injections.

B) at least 48 hours after 1st B12 injection starting on separate folic acid prescribed by GP

C) coeliac blood test

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).  

Email GP/practice manager

Politely insist they test for Pernicious Anaemia before starting treatment for B12 deficiency and folate deficiency

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is good enough can lead to severe neurological problems.

en.wikipedia.org/wiki/Subac...

It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.

Coeliac/gluten intolerance

Hashimoto's 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 test positive for coeliac, but a further 80% find strictly gluten free diet helps or is essential due to 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 

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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

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DonEstello in reply to SlowDragon3 months ago

Thank you so much for your responses. It's much appreciated.

I had a message from the Doctor today to say my homocsysteine levels are elevated indicating B12 deficiency. He has asked a specialist for their advice. He is waiting for the methylmalonic result and once he has this and the specialist advice he will implement a treatment plan

So still no treatment but I do feel this is progress of sorts.

D

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SlowDragonAdministrator in reply to DonEstello3 months ago

Horray 👏👏👏😀👍

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SlowDragonAdministrator in reply to DonEstello3 months ago

Insist on coeliac blood test too ……once they sort out B12 injections and folate supplements

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DonEstello in reply to SlowDragon3 months ago

Will do! Thank you for your help

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SlowDragonAdministrator in reply to DonEstello3 months ago

very high percentage of us with Hashimoto’s find strictly gluten free diet helps or is essential

But …as medics think gluten intolerance is an “airy fairy” non medical issue…..if you did test positive for coeliac they take more notice

Regardless of test result, it’s likely gluten free diet may help

But test first ….. and don’t go gluten free until had results. If test is positive you should have endoscopy to confirm….and need to remain on high gluten rich diet until this is done

If test is negative, you can consider trialing strictly gluten free diet in Jan/Feb …..once vitamin levels are optimal

But we only change one thing at a time otherwise impossible to decide what’s helping most

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