Levels fine but still exhausted what can I say ... - Thyroid UK

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Levels fine but still exhausted what can I say to the Endo?

HealthySam profile image
17 Replies

I have an appointment with my endocrinologist this pm still feeling absolutely crap on 75 Levothyroxine per day (since Jan) and worried he might put my dose down here are my latest blood tests (fasted)

TSH 0.13 (was 1.51 Nov)

T4 17.3 (was 14 Nov)

T3 5.4 (was 4.1 Nov)

B12 350 (was 475 Nov)

D 63.6 (was 50.7 Nov)

Ferritin 46.2 (was 42.9 Nov)

Folate 5.4 (was 10.43 Nov)

TPA > 1300 (constantly this)

I take vitamins per day: D 1005, Evening primrose oil 500 selenium 55, vit A 800, Vit E 12,Vit C 80, Zinc 5

What can I say to him? Or do? So knackered with brain fog pains in arms legs flu like symptoms. Exhausted.

Thanks for any help.

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HealthySam
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17 Replies
helvella profile image
helvellaAdministrator

Looks like B12 is slipping?

SlowDragon profile image
SlowDragonAdministrator

Have you had coeliac blood test done

Are you now on absolutely strictly gluten free diet and/or dairy free diet

You need to increase dose vitamin D

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

With Hashimoto’s we frequently need higher dose than average

Are you currently using vitamin D tablets or mouth spray

Obviously 1000iu isn’t anywhere near high enough dose

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG 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 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 hashimoto’s we frequently need higher dose than average

Suggest you increase to 3000iu daily and retest in 2-3 months

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...

HealthySam profile image
HealthySam in reply toSlowDragon

Hi Thanks for the info I drink a glass of orange juice with bits per day and forgot to say often take fizzy magnesium and zinc tablets too. I eat a piece of dark chocolate too and occasional liver pate but will increase this now. I also eat seeds - pumpkin are in them but will increase now. I’m gluten and dairy free following advice from here but haven’t had a coeliac test that is useful (Dr did one when I was already gluten free) I will it the Vitamin D mouth spray. Thanks for the suggestions.

SlowDragon profile image
SlowDragonAdministrator in reply toHealthySam

No point testing for coeliac on gluten free diet

Are you vegetarian or vegan?

B12 is dropping

Brand levothyroxine

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. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

shaws profile image
shawsAdministrator in reply toHealthySam

If B12 is low, before supplementing request GP to exclude you do not have pernicious anaemia first.

P.A. is another autoimmune condition and we need frequent B12 injections because our stomach can no longer absorb it.

There can be serious consequences if doctor doesn't diagnose/prescribe B12 or stops injecting. The following excerpt is from the link below:-

"Pernicious anaemia is the most common cause of B12 deficiency in the UK. It is classed as an autoimmune disease. The immune system normally makes antibodies to attack bacteria, viruses and other germs. If you have an autoimmune disease, the immune system makes antibodies against certain tissues of your body. If you have pernicious anaemia, antibodies are formed against your intrinsic factor, or against the cells in your stomach which make intrinsic factor. This stops intrinsic factor from attaching to vitamin B12 and so the vitamin cannot be absorbed into your body. It is thought that something triggers the immune system to make antibodies against intrinsic factor. The trigger is not known.

patient.info/allergies-bloo...

p.s. my mother died due to her GP stopping her injections for P.A. as GP stated to her "your blood tests are fine now and you don't need any more injection's". My mother died prematurely due to her GPs decision as she developed stomach cancer.

SlowDragon profile image
SlowDragonAdministrator

Ferritin still need improving

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...

SlowDragon profile image
SlowDragonAdministrator

B12 and folate

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

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 or Jarrow B Right are recommended options that contains folate, but both 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...

Do you have Low B12 symptoms

b12deficiency.info/signs-an...

If 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,

then 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 sublingual lozenges

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

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

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Teva brand upsets many people. Teva is only brand that makes 75mcg tablets

You could request trial on liquid levothyroxine

HealthySam profile image
HealthySam in reply toSlowDragon

Thanks for these suggestions I do make sure I stop vit B 2 weeks before tests and take my medication in middle of the night. I was on Teva but now on 50 Almus and 25 Mercury. Not really noticed a brand difference but is a larger dose which has helped with fatigue. I have swollen glands in my left neck which become painful when I’m feeling rough. Is this usual for Hashimotos? Also have dry eyes I now treat with gel drops and dry mouth scalloped tongue. The exhaustion is like when I had glandular fever (Epstein Barr) as a child. Crashing fatigue and brain fog is an accurate description.

I will follow the suggestions for the vitamins thanks.

SlowDragon profile image
SlowDragonAdministrator in reply toHealthySam

EBV is often a trigger for developing autoimmune thyroid disease

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...

Scalloped tongue might/should improve with B12/vitamin B complex

Jbrooke profile image
Jbrooke

Hi there! I don’t see any reference ranges, so it’s hard to determine how much change has been made. If you are still at the LOW END of the range, you may still be symptomatic. Have you considered adding some T3, like Cytomel? Or changing to a NDT med?

B12, ferritin , and other deficiencies can contribute to fatigue for sure. If you have any dietary sensitivity, like gluten, that can zap your energy too. A lot of thyroid patients never seem to have that deep restorative sleep we all need. There is also melatonin, which you would want to clear with your doctor first.

JAmanda profile image
JAmanda

I’d try to get your folate up a bit and say you uwant to stick where you are fr a while and stay on thisstable dose - neither t4 or T3 are over range.

McPammy profile image
McPammy

You might be going slightly over medicated. You can feel heavy, tired brain fog etc when over medicated. I certainly do feel these symptoms when I’m heading in over medicated territory. During the winter we tend to not be as active as the rest of the year. Medication T4 and T3 can build up over weeks if not used up by your activity levels and energy expenditure. And it’s not always about dropping T3 consider dropping T4 dose.

jgelliss profile image
jgelliss in reply toMcPammy

Great post.

Ezzie33 profile image
Ezzie33

Flu like symptoms could be an indicator of PEM (post exertional malaise) which is a defining symptom of ME/CFS. Do these symptoms come when you've done some activity or are they always there?

If they come on after activity, look into pacing. Not saying you have ME, just pacing is a great tool to help manage your energy levels, recognising your limits and maybe preventing things from getting that much worse.

There's good info on the ME Association website. Also a good community on facebook & another on reddit for support. (I can find the links later if you need, battling my cat headbutting my phone whilst typing this!)

HealthySam profile image
HealthySam in reply toEzzie33

Thanks for the info I do have CFS so am careful not to overdo it but didn’t have much info on it thought it was connected to the thyroid so will look at your suggestions.

Ezzie33 profile image
Ezzie33 in reply toHealthySam

It's so hard to tell what's a symptom of CFS vs something else, since it impacts everything in our bodies! I played the "is it covid or just my cfs?" game quite often during lockdown.

Here's the link to the wiki on the reddit cfs forum reddit.com/r/cfs/wiki/index/

Loads of helpful info on there. Note that it is a global community, but predominantly American so they have different treatments available that might not be accessible here.

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