Worse after increase in Levo: Hi everyone. My... - Thyroid UK

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Worse after increase in Levo

Gerri030306
Gerri030306

Hi everyone.

My Endo tested my T3 which was low 3.9 (3.5-6.6) and agreed to an increase of 25 mg of Levo.

I feel worse, still exhausted and cold with a basal temp of 34 degrees. Thigh muscles are very weak.

All vitamins and minerals are the bottoms of the range. She argues with me, telling me this isn’t an issue.

Ferritin is 26 range (10-291) she prescribed iron tablets without doing a full iron panel.

She keeps arguing with me even though I am trying to explain to her about the low levels.

Should I change Endo’s? This is my third one!

Where are the articles/ info I have read on here which talk about absorption of thyroxine in relation to low vitamin levels?

I feel like I’m going crazy.

Thanks everyone

18 Replies
shaws
shawsAdministrator

I had a similar reaction to you when on levothyroxine alone. I also developed severe palpitations in the middle of the night. The cardiologist who was trying to find out the reason for these palpitations was thinking of putting an implant in my heart to 'see what was going on'.

A few weeks later T3 was added by an Endocrinologist to T4 and palps ceased altogether and eventually I took T3 alone. Neither did I return to the endocrinologist who, due my TSH, wanted me to stop T3. I said I cannot do that as my health has improved so was told to reduce T4. The more I reduced T4 the better I became.

I then found Thyroiduk.org.uk and due to their help and assistance enabled me to restore my (and many members) health - before Healthunlocked who now cover all autoimmune conditions. I think Healthunlocked is a brilliant idea because we have the opportunity to read/learn/improve through other members' experience of their conditions.

I think the fact, too, is that because members are suffering despite being diagnosed and given replacement thyroid hormones. If not they wouldn't be searching the internet and HU allows us to have more knowledge about our conditions.

SlowDragon
SlowDragonAdministrator

Previous post 2 months ago

I got my results:

T3 low below range,

T4 slightly low,

Testosterone low,

Ferritin low,

She is increasing my Levo and retesting in 4-6 weeks.

So how much levothyroxine were you taking ?

Presumably dose was increased 2 months ago and now been retested

And now increased again?

So how much are you now taking

Bloods should be retested 6-8 weeks after EACH dose increase

Which brand of levothyroxine are you currently taking

Do you always get same brand

What other vitamin supplements are you currently taking

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Have you had vitamin D, folate and B12 tested?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

SlowDragon
SlowDragonAdministrator

All vitamins and minerals are the bottoms of the range. She argues with me, telling me this isn’t an issue.

Ferritin is 26 range (10-291) she prescribed iron tablets without doing a full iron panel.

Exactly how low are vitamin D, folate and B12

Low ferritin

Are you vegetarian or vegan?

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.

Thyroid disease is as much about optimising vitamins as thyroid hormones .....but man6 endocrinologist seem completely unaware

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

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

healthunlocked.com/thyroidu...

Post discussing why important to do full iron panel test and retest regularly

You can get full iron panel test via Medichecks

healthunlocked.com/thyroidu...

Why low ferritin needs improving

healthunlocked.com/thyroidu...

Hi

Vit D 67 (51-249)

Folate 13.3 (>5.4)

VitB12. 555 (211-911)

No I’m not vegan or vegetarian, I eat fresh fish and some chicken.

Thanks for your help.

SlowDragon
SlowDragonAdministrator in reply to Gerri030306

So vitamin D is on low side but not low enough for NHS to prescribe

You will need to self supplement to improve to at least around 80nmol and around 100nmol maybe better

Folate and B12 are ok

You might benefit from starting on daily vitamin B complex

Hi I have been taking B complex for 2 months and Vit D on prescription for 3 years. Thanks for your help.

SlowDragon
SlowDragonAdministrator in reply to Gerri030306

How much vitamin D are you prescribed?

Desunin 800 IU.

SlowDragon
SlowDragonAdministrator in reply to Gerri030306

Are you currently taking any magnesium and vitamin K2

Calculator for working out dose vitamin D you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

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...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf

I will have a look at those tomorrow. That other article you sent me on Iron and Thyroid is really helpful! Thank you so much.

SlowDragon
SlowDragonAdministrator in reply to Gerri030306

To improve ferritin you need red meat

In answer to your question, yes. Just because someone went to university and got credentials to practice endocrinology, does not mean they are particularly bright enough to help you get well.

Best of luck stumbling upon someone who listens and thinks.

Thanks for your reply. Your right! She’s been promoted to clinical lead and is very unhelpful. The people on here are amazing and I don’t know what I would do without them.

It’s putting the cart before the horse to worry about vitamin levels et cetera without having an absolutely clear bead on all your vital thyroid hormone levels - free T3 free T4 and TSH at the very least all from the same blood test taken at regular intervals at the same time to see a trend. This together with thyroid hormone replacement dosing and symptom diary is the starting point. Your thyroid hormones are way way way more significant then tweaking vitamins unless you are catastrophically deficient in selenium for example. Aim for healthy normal levels of thyroid hormones and TSH for a while before deviating to levels which may be unique to you for optimum function . Healthy normal free T3 is commonly not as high as the lab range may suggest! And total T4 has to be enough to feed intracellular conversion even if you take t3 replacement; such that free T4 is between 14-17 and TSH between 1 and 2 and free T3 between 4.5 and 5, or thereabouts.

What ranges are u basing this “optimal” on?

That first link may not direct try ncbi.nlm.nih.gov/pmc/articl...

Also worth considering that if you go through the data there is clearly an age related normal range by peer group and that if you see higher values than you have as normal it’s possibly because the cohort were much younger (unless you’re 21;) or you’re over medicated!

Data from literally thousands of euthyroid vs sick thyroid individuals here

google.co.uk/url?sa=t&rct=j...

There’s other data on common or normal thyroid values coincidental to other biological monitoring such as the Boston longitudinal ageing study (sorry I can’t find the reference quickly) and other small cohort studies on circadian profile of thyrotropin and thyroid hormones (which come out with higher normal values than the mass studies.

pubmed.ncbi.nlm.nih.gov/183...

and the Norwegian TSH study....

eje.bioscientifica.com/down...

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