HELP before speaking to GP tomorrow! - Thyroid UK

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HELP before speaking to GP tomorrow!

Dissydee profile image
7 Replies

Hello,

I’m still new to this forum and finding my way around.

I posted earlier this week for the first time about my story and received lots and lots of helpful information, more information than I’ve ever received from my GP since my diagnosis so thank you everyone!

It was recommended that I started a new post once I received my most recent test results. I have a GP appointment tomorrow to discuss them and I’d really like to go in armoured with as much information as possible. I’ve been trying quite hard to be referred to an Endo to no avail and my GP assured me that these results will decide whether or not I’m referred.

I assumed that I was going to have my TSH and T4 tested but that wasn’t the case on this occasion.

My last Thyroid results were normal:

5th January 2024

TSH - 0.96 miu/L [0.27 - 4.2]

T4 - 19.0 pmol/L [10.5 - 22.0]

My most recent tests were done to determine the cause of my extreme fatigue/tiredness and ectopic beats. These are:

Ferritin - 21 ug/L [13 - 150]

Though my result is within range, it’s showing as ‘borderline’.

Vitamin D - 21 nmol/L [50.0 - 140.0]

Result - Deficient

Iron - 19.9 umol/L [5.83 - 34.5-]

Result - Normal

B12 - 487 ng/L [197.0 - 771.0]

Result - Normal

Folate - 4.9 ug/L [3.0 - 26.8]

Result - Normal

Tissue Transglutamise IGA - 0.4 u/mL [0.0 - 6.9]

Result - Normal

Full blood count - Normal

Urea, Creat & Electrolytes - Normal

Bone Profile - Normal

Liver Function Tests - Normal

I’ve continuously had low levels of Vitamin D. Even though I have been given supplements in the past to take for a short time. I do eat a lot of Vitamin D rich foods so I’m confused as to why I am always so low on Vitamin D.

Is there any reason why I would be borderline or on the lower range of Ferritin despite having good Iron levels?

None of this really shows why I have such debilitating fatigue. Google suggests Vitamin D deficiency causes bone issues but not fatigue.

Any help would be so appreciated. I want to be well informed for my GP visit tomorrow.

Thank you ☺️

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Dissydee
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7 Replies
SlowDragon profile image
SlowDragonAdministrator

Low vitamin levels are extremely common symptom when hypothyroid

It’s frequently necessary to supplement vitamin D and B vitamins continuously to maintain OPTIMAL levels

NHS will only test for and treat vitamin deficiencies

Down to us as individuals to maintain GOOD vitamin levels

Currently your vitamin D is deficient so GP obligated to treat

GP should prescribe LOADING dose

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

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 thyroid disease , 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 when supplementing

Can test via NHS private testing service

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...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Too much Vitamin D is toxic

Test twice a year

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

B12 - 487 ng/L [197.0 - 771.0]

Result - Normal

Folate - 4.9 ug/L [3.0 - 26.8]

Result - Normal

These are normal…..but not optimal

Don’t start all supplements at once

Wait 10-14 days after starting one supplement before adding another to see what reaction you might have

Start vitamin D first

Improving low B12

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 separate B12 supplement

A week later add a separate vitamin B Complex 

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

Highly effective 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...

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

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

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 over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

SlowDragon profile image
SlowDragonAdministrator

Your ferritin is deficient

Are you vegetarian or vegan

You will need to improve to at least over 70

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

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

Great replies from @FallingInReverse

re ferritin and Three arrows

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40. 30 to 180

Females 40 ≤ age < 50. 30 to 207

Females 50 ≤ age < 60. 30 to 264l

Females Age ≥ 60. 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

SlowDragon profile image
SlowDragonAdministrator

So you will need to get FULL thyroid testing

TSH, Ft4 and Ft3 tested privately yourself

HOWEVER as per previous post

healthunlocked.com/thyroidu...

Recommend you WAIT at least 8 weeks

Work on improving absolutely dire vitamin levels before testing thyroid levels

Would also strongly recommend you trial strictly gluten free diet eventually ……but it’s important to only make one change at a time

Get all four vitamins optimal first

It’s going to take several months to improve ferritin levels

Read posts every day……you will soon see just how common ferritin deficiency is on levothyroxine

Ectopic beats likely linked to low Ft3

Improving low vitamin levels should improve conversion rate of Ft4 to Ft3

You are likely in need of dose increase in levothyroxine once conversion rate improves

Dissydee profile image
Dissydee

SlowDragon

Thank you so much for such helpful information ☺️

Unfortunately for me, my doctors appointment didn’t go very well. My doctor has provided me with a high dose prescription for Vitamin D only. She did not feel I needed an iron supplement despite having Ferritin levels below 30.

I cried, I begged and pleaded with her to help me with this debilitating fatigue and her answer was that I’m depressed. I am NOT depressed. I currently take anti-depressants (Fluoxetine 20mg) but I am certainly not depressed and being an expert on my own feelings and emotions, I would for sure be certain if I were depressed. I have been on this path before and know it very well.

I explained that there must be another reason for my fatigue, it’s so severe I can barely function daily. I’m barely surviving. Her answer was that all my tests are normal and that there is nothing else she can do expect prescribe me more anti-depressants.

She was also adamant that Vitamin D is the reason I’m so fatigued and to review in 10 weeks whether or not it’s improved.

I feel so helpless right now. I’m thinking I need to go private.

SlowDragon profile image
SlowDragonAdministrator in reply toDissydee

So that’s (unfortunately) pretty typical

You can, with the help of this forum, significantly improve symptoms by FIRST improving vitamin levels

Then….conversion of Ft4 (levothyroxine) to Ft3 (active hormone) will improve

Only add one vitamin supplement at a time

Starting with vitamin D

Presumably GP has prescribed total of 300,000iu over 6-8 weeks

Vitamin D tablets must be taken at least 4 hours away from levothyroxine. Best taken with high fat meal…..so typically that’s your evening meal

You may prefer to buy vitamin D mouth spray and take 5000iu per day for 8 weeks……or 7000iu per day for 6 weeks

Which ever you decide……important to add a separate magnesium supplement afternoon or bedtime

Magnesium must be at least 4 hours away from levothyroxine

So start on vitamin D

Add magnesium after 10-14 days

Then after another 10 days add B12 …..and after a week start daily vitamin B complex

Meanwhile

Ferritin

Order a FULL iron panel test yourself from Medichecks

come back with new post once you get iron panel test results

You can/should start significantly increasing iron rich foods in your diet now

Read up all posts discussing Three Arrows iron supplement - once you get iron panel results you can look at starting supplements

healthunlocked.com/search/p...

Three Arrows seems to give fast results

So is popular opinion…..assuming you aren’t vegetarian (it’s derived from meat)

Retest Thyroid Levels 6-8 weeks after starting on vitamin B complex

Test TSH, Ft4 and Ft3

Test early morning, before 9am, only drinking water between waking and test and IMPORTANT….last dose levothyroxine 24 hours before test

SlowDragon profile image
SlowDragonAdministrator

When do you take your levothyroxine?

Waking or bedtime

And do you know levothyroxine should always be at least 2 hours away from any other medication or supplements

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

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

Do you always get same brand levothyroxine at each prescription?

No point (yet) considering private consultation

Work on improving terrible vitamin levels……then retest thyroid (and ideally vitamin levels too) ……if Ft4 is too low, or TSH too high by then …..GP should increase dose Levo as next step

If after next test ……TSH low, Ft4 high …..but Ft3 low …..then it’s time to be looking at getting T3 prescribed alongside levothyroxine via endocrinologist

But it’s ESSENTIAL vitamin levels are optimal BEFORE considering adding T3

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

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