Update on bloods: Hi all, I posted a couple of... - Thyroid UK

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Update on bloods

PurpleChez profile image
22 Replies

Hi all,

I posted a couple of weeks ago as my blood results had dropped slightly from the previous lot 6 months ago and I am feel pretty rotten. GP wouldn't up my levo from 100 as results were "normal"......starting to despise that word!! She did however agree to some vitamin tests and T3 (which she then backtracked on)

I'd be grateful for comments on the below. I see my GP again in 2 weeks after they requested an appt based on bloods

Serum zinc 17.3 (10.70-19.50umol)

Serum magnesium 0.80(0.7-1.0nmol)

Serum ferritin 64 (10-120ng/ml)

Serum folate 19.5 (3-12ng/ml) abnormal

Serum B12 443 (200-900pg/ml) - please note I take 1200ug per day sublingual supplement of B12 (this is up from 236 previous test Dec 2022)

Serum 25-OH vit D 82.8 (50-150nmol) - please note I take 50ug per day supplement (up from 75.3 Dec 2022)

TSH 3.15 (0.1-5.0mU/L) up from 2.71 Dec

Serum T4 18 (12-23p/mol) down from 23 in Dec

T3 done privately in December was 4.33 (3.1-6.8) but obviously T4 has dropped since then

Interestingly some of my full blood counts have been a little weird.....although doc says it's fine

- MCH 33.6 (26.5-31.5) up from 32.9 in Dec. This has been abnormal for 2 years

- MCV 99.1 (80-100fl) down from 100.4 Dec. This has fluctuated between abnormal and borderline high for 2 years

Anti nuclear factor is abnormal

I want to see the GP before I pay for another private test as its quite frankly adding up!! Any help would be gratefully received. I have lifted all the links from previous posts and taken the bits I need, such as my TSH being way over the optimal and still room for movement, especially based on my symptoms. I will present these to my GP.

I was free of symptoms between Decemeber and June before my T4 dropped.

Symptoms include

- Extreme exhaustion - I slept 5 hours for a "nap" yesterday and another 10 hours last night and am still dead on my feet

-Loss of appetite and a little nauseous sometimes

- breathlessness and palpatations doing basic stuff like walking up the stairs

- dry skin and itchy scalp

- swollen neck (I've had scans previously and my thyroid is not smooth but has no nodules)

- brain fog and can't get my words out

- inability to concentrate

- tinnitus is raging

- poor memory

Any ideas?

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PurpleChez profile image
PurpleChez
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22 Replies
greygoose profile image
greygoose

Any ideas?

Yes. You're grossly under-medicated to have a TSH over 3. And your GP is a clown if she thinks that all she has to do is get the TSH somewhere within the range - anywhere will do - and her job is done. The idea is to get the TSH down to 1 or under. At 3 you are still hypo, so not surprising you still have symptoms. I really don't know what one can do in the face of such ignorance.

No point in testing magnesium. The level can look fine but you can still be deficient. Just take some. Excess is excreted.

Zinc and copper should be tested together because with hypothyroidism one is usually high, and the other low. Your zinc looks not too bad, so your copper could be low, but best to test before supplementing.

Your ferritin is a bit low. Can you eat more iron-rich foods, like liver?

Do you take a B complex with your B12? Because although your folate is good, your B12 is still a bit low. Should be at least over 550.

There isn't actually an optimal level for TSH. It is what it is according to the levels of your Frees and the efficiency of your pituitary. It is a very poor indicator of thyroid status. The most important number is the FT3, because that is the active thyroid hormone. And they don't even test that! Honestly, it's as if they don't want us to be well!

PurpleChez profile image
PurpleChez in reply to greygoose

Greygoose I love you!! Your response is just how I am feeling and it makes me feel so much better to know its the GP who is the clown and not me being sensitive!! I'll start with copper too.....didn't even know that was a thing so thank you!!

greygoose profile image
greygoose in reply to PurpleChez

Well, copper and zinc need to be balanced. The GP should know that! But, when hypo they often aren't, which she might not have known. Why did she test zinc? That's not normal practice. But, you do need the copper tested before supplementing, because excess copper is not nice!

PurpleChez profile image
PurpleChez in reply to greygoose

I've asked to see a different GP this time so will raise this with them and again the failure to test T3, amongst a list of other things I'm not happy with!! I will explore a private test for copper as well if they refuse

PurpleChez profile image
PurpleChez in reply to greygoose

Oh and the worrying thing is, she allegedly consulted and endo who said my bloods were fine and the symptoms didn't even match hypothyroidism.....I mean seriously......thats concerning

greygoose profile image
greygoose in reply to PurpleChez

That sounds like a typical endo summing-up! They have no idea what they're talking about, for the most part, and certainly know absolutely nothing about symptoms! They are so ignorant it makes your eyes water.

Trouble is, GPs think endos are the experts because of their name: endocrinologis. Which suggests that they know all about all hormones in the endocrine system. But they don't. Most of them are diabetes 'experts' - and not much good at that, either, from what I've heard!

PurpleChez profile image
PurpleChez in reply to greygoose

That is definitely the worrying bit, especially because now I can guarantee the other GPs will read that and dig their heels in on upping my dose. I will however make it clear that they do it with me and manage it or I'll do it myself.....im losing patience

I've thought about a private endo who is also on the NHS so then I can switch back, but if this is the quality then I'll save my money!!

greygoose profile image
greygoose in reply to PurpleChez

Well, I'm told there are some good ones out there. I've just never found one myself. You could ask on here for recommendations in your area.

SlowDragon profile image
SlowDragonAdministrator

Was test done early morning, ideally just before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you taking

Do you always get same brand at each prescription

Request “trial “ increase to 112.5mcg daily (cutting a 25mcg tablet in half)

Retest in 6-9 weeks

Approximately how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

sps.nhs.uk/wp-content/uploa...

Page 9

Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

PurpleChez profile image
PurpleChez in reply to SlowDragon

Hi slowdragon, yes all done before 8.30am, without taking levo or eating and nothing from 7pm the night before. I take aristo levothyroxine and have been on that for about 18 months without any change.

I've stolen all of the above links from a previous post and started putting together my arguments for the GP as I've asked to see a different one.....the other was a little "hard faced" and not willing to discuss. Let's see how this next one goes!!

SlowDragon profile image
SlowDragonAdministrator in reply to PurpleChez

Are you dairy intolerant?

PurpleChez profile image
PurpleChez in reply to SlowDragon

No, don't have much to be fair anyway, but no symptoms to suggest I have intolerance of that nature. I'm actively monitoring how I behave after dairy or gluten but genuinely don't see anything concerning

SlowDragon profile image
SlowDragonAdministrator in reply to PurpleChez

wondered if that’s why you were on Aristo (lactose free)

With food intolerances it often takes weeks/months to see difference after cutting out completely

PurpleChez profile image
PurpleChez in reply to SlowDragon

No, just seems to be the one the chemist uses.

I felt amazing for the last 6 months.....like my old self, then I bombed and I knew the bloods had dropped. I'd assume if I had intolerance I wouldn't have felt as good as I did but I may be wrong. They have tested me for all but they were clear.......or within range and we all know how that plays out

PurpleChez profile image
PurpleChez in reply to SlowDragon

Sorry slowdragon, I missed part of this. I'm roughly 65kg so am slightly under the recommended dose by that calculation

SlowDragon profile image
SlowDragonAdministrator

Vitamin levels

Vitamin D

50ug is only 2000iu per day

Many members find they need higher dose than this

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 private testing service when supplementing

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.

One spray = 1000iu

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

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

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

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...

SlowDragon profile image
SlowDragonAdministrator

B12 and Folate

If taking a separate B12, recommended to also take daily vitamin B complex

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

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...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

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

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until B12 over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

PurpleChez profile image
PurpleChez in reply to SlowDragon

Thanks slowdragon. Am I OK to take b complex if my folate is so high?

SlowDragon profile image
SlowDragonAdministrator in reply to PurpleChez

Serum folate 19.5 (3-12ng/ml) abnormal

If 12 is abnormal, 19 is not high

Top of range quite likely 60

B vitamins are water soluble so we just excrete excess

Your pee will go bright yellow

PurpleChez profile image
PurpleChez in reply to SlowDragon

Awesome thank you! I'll look into that! I have the better you B12 and the immune health sprays now, so will explore the B12. I suspect I can't absorb through the gut as I've always struggled with vitamin tablets not making a difference i.e. when I was pregnant and low on iron etc

porter5 profile image
porter5

Serum blood tests are very misleading. The magnesium values only refer to whats in the blood which is 1% of total body values which include organs, tissues,bones,.so there is no reliable test for magnesium. but it is essential for the utilisation of calcium, its also an electrolyte involved in hundreds of biochemical reactions.and its important to get the RDI value which is 320mg for women daily... check out how much you are taking in from your diet and supplement to meet the daily intake value. It may take some time before you increase you whole body values but its essential. Also there are many types of magnesium. They have different rates of absorption. a good one is Magnesium Chloride rub on. this method is better than a tablet which goes via the stomach and may be poorly absorbed. You can get it in a small spray container about £13. Make sure you rub it in well. Its contra indicated if you have kidney diseease.

Whatever else you do magnesium levels need to be right. Its worth doing some research on the benefits. you'll be glad you did. a good book is Dr Caroline Dean's book, The Magnesium Miracle.

Porter 5

PurpleChez profile image
PurpleChez

Thank you so much! I'd seen those rub in magnesium supplements and actually suggested them to my husband so maybe I should take my own advice 🤣

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