Newbie looking for advice on recent test result

[Bambam22]

I was diagnosed with an underactive thyroid in april 2022. What a rollercoaster! Do I have an autoimmune thyroid disorder?

My first test was looking at reason for a change in bowel movements and fatigue.

Doctor responded directly to the TSH level and placed me on 25mg levothyroxine.

Serum TSH level 32.2 miu/L (0.4-49).

Serum free T4 level 7.6 pmol/L (9-19)

Serum Ferritin level 36 ng/ml (15-204)

Tissue transglutaminase IgA level <0.2 u/mL

I felt terrible, confused, forgetful, weight gain hairloss, pins and needles with fatigue off the scale. My quest to understand grew 😁

Second NHS blood test June 2022 results

Serum TSH level 4.9 mu/LLL

Serum free T4 level 12. 4pmol/

Serum thyroid peroxidase antibodies 951 iu/mL (0.0-6.0)

Still feeling symptomatic doctor increased levothyroxine to 50mg.

I changed my diet and lifestyle as a result of reading many of the threads on this site. I went gluten and diary free, I ate whole foods removed processed foods and followed a thyroid friendly diet and included anti-inflammatory foods (and still do and feel a positive difference with a little lost a of weight)

Out of desperation to understand what was going on I ordered my first medicheck advanced thyroid....and wow I was amazed.

CPR HS 0.75 mg/L (0-5)

Ferritin 56.8ug/L (13-150)

Folate Serum 9.55 ug/L (>3.89)

B12 active 50.8 pmol/L (37.5-150)

Vitamin D 83 nmol/L (50-200)

TSH 1.41 mU/L (0.27-4.2)

Free T3 4.04 pmol/L (3.1-6.8)

Free T4 19.3 pmol/L (12-22)

Thyroglobulin antibodies 212 IU/ml (<115)

Thyroid Peroxidase 815 IU/ml (<34)

I was improved and feeling a little more human but I was stilling having hair loss, tremendous pins and needles running down my legs whilst active and at rest, still fatigued and lacked energy. Medichecks advised B12 testing.

Spoke with doctor, who was reluctant to run bloods for B12 but I empasised I was symptomatic for B12 neurological symptoms (thanks to you guys). Bloods taken.

3rd NHS Blood test results August

Serum ferritin level 33 ng/L

Serum B12 280 ng/

Serum folate 10.5 ng/ml

I have been supplementing my diet since June with Q10, magnesium citrate, turmeric, Cod liver oil, vitamin B complex, cytoplan antioxidant, probiotic. There is so much out there but what is the right approach.

(All test taken following your guidance on stopping supplements and delaying levothyroxine)

Where should I go next?

what do you wonderful people make of my journey?😀

[GlowCoach Administrator]

Thyroid issues are notoriously slow to resolve, sometimes even on the right dose. It's not clear when your last test was or what dose you were on and if the doctor increased your dose then but you do have room for an increase.

Your vitamins still have room for improvement so keep going with the supplements and retest them in a few months from last test. I'm sure others will come along with more detailed advice but patience and persistance is the key. Hang in there.

[Bambam22 in reply to GlowCoach]

Thank you for your support, very much appreciated. I will keep hanging 😜

[Bambam22 in reply to GlowCoach]

Meant to say my last test for thyroid panel was medichecks in early august and my b12, etc was last week.For both tests I was on 50mg of levothyroxine . My next NHS test for thyroid is end of september. But i assume this will be limited.

[GlowCoach Administrator in reply to Bambam22]

Yes the NHS test will be limited to either just TSH or TSH and FT4 which is next to useless to know how you're doing in reality. You need the FT3 result to know how you're really doing + the vitamins which make a huge difference.

Sounds like your low B12 is causing issues. I assume your GP wasn't impressed enough with your results to treat you? Which B complex are you taking? It needs to have the active type vitamins in it as opposed to ones your body has to pre process.

[Bambam22 in reply to GlowCoach]

Boots high strength B complex, probably not the best. What do you fi d is the best type?

My doctor is away this week so not sure what her view will be. I read a great post on here last week about B12 and the NICE guidelines. I may have to reference them unless there is an alternative.

[GlowCoach Administrator in reply to Bambam22]

Definitely not the best B complex, in fact its fairly low dose and also the wrong type of Folic Acid. Waste of money sadly, best to bin it. Here they recommend Thorne Basic B Complex which is a higher dose and the correct methylated form of vitamins.

For the extra B12 you need try a spray or sublingual lozenge. Look for the words 'active' or 'methyl'.

[LeighDelaine in reply to GlowCoach]

Hi Jaydee, I am really interested in your reply to BamBam. I've had an underactive thyroid for many years. I would like to take folic acid. Which is the right type?

[GlowCoach Administrator in reply to LeighDelaine]

It's a complicated subject of which I am no expert. Some types of folate suit some better than others so if you buy one that you think doesn't agree with you then just try a different type. I'll link an article that gives a good explanation of the types. I'm only 5 weeks into taking a B complex (Thorne Basic B) but already discovered I need more than what's in that so am topping up with some 1mg capsules separately.

It's going to take a while but it may well make all the difference for myself.

education.seekinghealth.com...

[LeighDelaine in reply to GlowCoach]

Thank you! Very helpful. All the best. Leigh

[Regenallotment Ambassador]

It sounds like you are on the right path and making progress. The vitamin side should gradually improve. You must have been SO poorly with those first blood test results, my goodness you poor thing. I’d push for another Levo increase if you are still on 50mcg, that is just a starter dose to titrate up from, I felt worse after 8 weeks on 50 than I did on 25mcg, I’m 4 weeks into 75mcg and improving but there is a way to go and I started this journey over a year ago. I’ve benefited from a vitamin D loading dose and B complex and eating liver once a week. About to retest D so we shall see if I’ve made progress! And yes the high TPO antibodies is a marker for Auto Immune Thyroid Disease also known as Hashimoto’s. 🦋💚🦋

[Bambam22 in reply to Regenallotment]

Many thanks for you response.I have been looking at vitamin D. What dose/strength should I be considering?

I will be having a call from my doctor when she returns from her holiday leave to discuss my medication.

I did feel horrendeous in the days and things are improving but there is always an ebb and flow.

[Regenallotment Ambassador in reply to Bambam22]

Here is another amazing reply from SlowDragon on Vitamin D from a few days back. healthunlocked.com/thyroidu...

Read up on all these links and do what is right for you. Post again and share how it’s going. 🦋💚🦋

[SlowDragon Ambassador]

What’s the range on B12 and folate results?

As you have very low B12 you need a separate B12 as well as vitamin B complex initially

Which vitamin B complex are you currently taking

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

chriskresser.com/folate-vs-...

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)

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 methyl folate supplement and continue separate B12

Low B12 symptoms

b12deficiency.info/signs-an...

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...

[Bambam22 in reply to SlowDragon]

You are all amazing thank you.The range for B12 187-883 I was 280 ng/L

The range for folate was 3.1-20.5 I was 10.5 ng/ml

My vit B complex is probably quite poor. Having read the contents it contains folic acid not folate. It is Boots high strength. I will look at your recommendation.

Thank you for the advice on B12

👍

[SlowDragon Ambassador in reply to Bambam22]

You can find Thorne B complex on Amazon or similar

[Ajva in reply to SlowDragon]

I have been taking this since recommended. It is brilliant stuff, although has brought my skin up a bit. The ingredients are really good quality and all the right forms

[Bambam22 in reply to Ajva]

I have just purchased and I will keep you posted. Thank you for your insight. It is really helpful

[humanbean in reply to Ajva]

I have been taking this since recommended. It is brilliant stuff, although has brought my skin up a bit. The ingredients are really good quality and all the right forms

If by "brought my skin up a bit" you mean you have developed spots, that happened to me when I first started taking a supplement containing methylcobalamin (one of the active forms of vitamin B12) and as my B12 level rose my spots went away. I've also discovered that I get spots again when/if I allow my B12 level to drop. So I try to keep it at a good level all the time. But as long as I keep my B12 levels up my skin is in better condition than it has been most of my life.

[Ajva in reply to humanbean]

I do not usually suffer with skin problems but is more like a red sore rash on my face. My face is bright red so I have held off a few days taking it then I am going to split the capsule and take half each day and build up.

[Doris11 in reply to Ajva]

Hi there it does say in ingredients that Niacin can cause flushing ☺️

[SlowDragon Ambassador]

How long since this Medichecks test?

Ferritin is terrible

Are you vegetarian or vegan

Pre or post menopause?

GP should be running full iron panel test for anaemia

Have they done so?

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

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

Also See page 7 on here

rcn.org.uk/-/media/royal-co...

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

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

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.

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...

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

Medichecks iron panel test

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Good explanations of iron

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements

healthunlocked.com/thyroidu...

[Bambam22 in reply to SlowDragon]

My medichecks test was first week of august 2022.. I chose them as a result of all the advice given on here.

I was a plant based eater from last august 2021 until june this year. I followed the diet to reduce inflammation, it worked but unfortunately lack of supplementation throughout, dropping levels of vital nutrients, minerals and vitamins are likely to have contributed to my perfect storm. I now consume eggs and chicken.

I am a lady of a certain age and most definately in menopause at 53 years. Doctor will not provide any treatment for this until my thyroid is 'stable'.. not sure she knows what that means.

I have not had an iron panel test.

[SlowDragon Ambassador in reply to Bambam22]

Suggest you get full iron panel test

Meanwhile……Look at starting liver pate, red meat, etc

If you can’t face liver ….hide it in Shepherds pie, spag bolognaise etc ….

[Bambam22 in reply to SlowDragon]

🤢 I can do this. Thank you

[Regenallotment Ambassador in reply to Bambam22]

Ha! I vowed I’d never eat offal after childhood dinner table trauma, and here I am woofing down liver once a week 🤣 chop it fairly small, stir fry with chopped onion and maybe bacon, courgette and some spinach or chard. Then sprinkle some gluten free Worcester sauce on at the end. It’s tolerable 😬 honest 🦋💚🦋

[Bambam22 in reply to Regenallotment]

I will let you know🤣..mind over matter

[SlowDragon Ambassador]

Thyroid levels

Approx how old are you

How long ago was Medichecks test?

You have been on 50mcg levothyroxine since June?

This is only the standard starter dose

Which brand of levothyroxine are you currently taking

Likely to need further dose increase in levothyroxine soon

Was Medichecks test done early morning and last dose levothyroxine 24 hours before test

Approx how much do you weigh in kilo

Improving low vitamin levels helps tolerate next dose increase

We need good vitamin levels for good conversion of Ft4 to Ft3

FT4: 19.3 pmol/l (Range 12 - 22)

Ft4 was 73.00% Through range

FT3: 4.04 pmol/l (Range 3.1 - 6.8)

Ft3 only 25.41% through range

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

Looking for Ft3 at least 50-60% through range

[Bambam22]

Medichecks 11th august.I am 57 kg

I am on Almus???

I followed your guidance to letter, early morning bloods, delayed levothyroxine and stopped supplements 7 days before 😁

My doctor gave no advice 😔

How do you improve the conversion ratio of T4 to T3?

When should I order a further medichecks test?

Many thanx

[SlowDragon Ambassador in reply to Bambam22]

Improving conversion of Ft4 to Ft3

First step …..Optimal vitamin levels

Retest in 6-8 weeks…..likely to be ready for next 25mcg dose increase in levothyroxine by then

After vitamins are optimal…..if Ft3 still lower % through range than Ft4…..Possibly try splitting levothyroxine dose in half….taking half waking and half at bedtime

Always worth trying…..Strictly gluten free diet and/or dairy free diet

[Ajva]

50mg is a starter dose and there is room for a dose increase. I would ask to go up to 75mg on the fact you are still systematic. As all the others say above it is important to get your vitamin levels optimal to help the conversion.

There are also private options for other drugs but I would see how you go on the standard t4 from the nhs as it is funded.

I was dignosed a few years ago and gradually go to 100mg.

My Gp wouldn’t let me go above 60mg due to heart problems I have but I was drastically under-medicated (probably causing more issues that I knew)

[helvella Administrator in reply to Ajva]

Doses of thyroid hormones are (usually) in micrograms (mcg) - not milligrams (mg).

There is a section on measurements in my Vade Mecum document.

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Please don't get put off by the number of pages!

Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information.

And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again.

In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.

If there is anything you'd like me to add, let me know.

From Dropbox:

dropbox.com/s/vp5ct1cwc03bl...

From Google Drive:

drive.google.com/file/d/1P9...

[Bambam22 in reply to helvella]

Thank you for the link helvella

[Bambam22 in reply to Ajva]

That must have been frustrating. I had been honest with my GP and said things were improving.

This was interpreted as I was 'better'. I then spent the next 5 mins emphasising I was still feeling rubbish. All about lost in translation.

Language is powerful does anyone have a list of words or phrases not to use

😆

[Gingernut44 in reply to Bambam22]

Most medics have cloth ears and only listen to the first words. Anything you say after is totally lost on them. Always say “I’m sure I could feel better” 😀

[Bambam22 in reply to Gingernut44]

In my vocabulary now😆

[App1]

Mine too! 🤠