Symptoms worsening toward next levothyroxine in... - Thyroid UK

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Symptoms worsening toward next levothyroxine increase?

PinkCat2023 profile image
10 Replies

Hi everyone,

I’m on 75 mcg Levo per day, increased from 50 mcg per day 5 weeks ago. My symptoms (heartburn being the most noticeable) were getting less since increasing the dose. Now that I’m approaching my 6 weeks blood test, my symptoms are getting worse again. Is this normal?

Most recent test results from 08Jan24, not taken Levo 24 hours prior:

TSH 1.53 (0.27 - 4.20)

FT4 12.7 (12 - 22)

FT3 3.2 (3.1 - 6.8)

Iron 16.2 (6.6 - 26.0)

TIBC 70 (41 - 77)

Transferrin saturation 23% (20 - 55%)

Ferritin 14 (13 - 150)

Little bit of background; I tried NDT in December, which made my FT4 too low and that’s when my heartburn kicked off. Test results from 19Dec23, NDT taken about 4-5 hours prior) :

TSH 0.75 (0.27 - 4.20)

FT4 12.4 (12 - 22)

FT3 4.6 (3.1 - 6.8)

I’d love to know what’s going on :)

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PinkCat2023
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10 Replies
SlowDragon profile image
SlowDragonAdministrator

Now that I’m approaching my 6 weeks blood test, my symptoms are getting worse again. Is this normal?

Yes perfectly normal……shows your body is getting ready for next 25mcg increase in Levo

Get bloods retested 6-8 weeks after each increase (or brand change) in levothyroxine

Which brand of levothyroxine are you currently taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

is your hypothyroidism autoimmune

What vitamin supplements are you taking

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you, really good to know this is not out of the ordinary.

I'm currently taking Tirosint.

Will do test as early as possible in the morning.

I had a hemithyroidectomy 5 years ago, after which I became truly hypothyroid but my doctor told me, based on old blood tests (and symptoms maybe) I'd been hypo for much longer.

Supplements:

Omega 3 fish oil (Nordic Naturals) 1/day

Beef liver (Gains Nutrition) 1 caps / day

Vit E complex (Cytoplan) 100 mg / day

Ionic magnesium chloride (Good State) 300 ml / day

Calcifediol (D.velop) 10 mcg / day (type of vit D)

Vit K2 MK7 (Vitamaze) 140 mcg / day

Emulsified vit A palmitate (Biotics Research) 600 mcg / day

Apple Cider Vinegar w mother (Nutravita) between 600 - 1,800 mg / day

Benfotiamine B1 (Doctor's Best) 150 mg / day

Riboflavin B2 (Health Leads) pinch, as needed

Methylfolate B9 (Ethical Nutrition) 50 mcg / day

S boulardii (Klaire Labs) micro dosing daily

Gaviscon Advance - as needed, typically 2 - 4 tabs / day

SlowDragon profile image
SlowDragonAdministrator

Good description by tattybogle in this post re what to expect starting on Levo

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

as per previous post replies

Have you retested ferritin levels yet

You were vegetarian…..but now eating meat?

Ferritin 14 (13 - 150)

GP should be doing full iron panel test to investigate your ferritin deficiency

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.

Any obvious reason for ferritin deficiency….apart from being left on ludicrously low dose 25mcg levothyroxine too long

Approx age?

Pre or post menopause

Vegetarian or Vegan

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.

strongly recommend you get B12, folate and vitamin D levels tested too

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon thank you so much.

Have you retested ferritin levels yet - no, will retest next week, with my other tests. I've started being more careful to not have magnesium supplements within 2 hours of eating meat, so that maybe that can help my ferritin. From what I've understood, magnesium can prevent absorption of iron, so maybe this can help. I try to not have calcium within 2 hours of eating meat either, but I've just had to take a post dinner Gaviscon again.

You were vegetarian…..but now eating meat? - indeed. My iron is finally in range again.

GP should be doing full iron panel test to investigate your ferritin deficiency - will do full iron panel next week. I've read that taking synthetic vit A and / or vit D can affect iron status, so I wonder if there might be something there? I take both.

My serum B12 is often too high, so I don't supplement with that. I had B6 toxicity in 2022. I wasn't supplementing that much, but I had diarrhea daily (now much, much better), which can lead to low intracellular B6 and high serum B6, from what I've read. So I don't take B6 anymore either. I don't feel right when I take it.

Any obvious reason for ferritin deficiency….apart from being left on ludicrously low dose 25mcg levothyroxine too long - possibly vit A / vit D supplementation. Heavy periods (stage 4 endometriosis). Leaky gut. Mold toxicity (hoping to move in net few months, new house is being mold remediated atm).

Approx age? 45

Pre or post menopause - pre

Vegetarian or Vegan - no

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. - I have MCAS (possibly due to mold toxicity) and am hypersensitive to supplements etc. I've tried pretty much every iron supplement under the sun and can't do any, hence why I started eating meat again. I didn't want to but seeing my iron level go up, told me I shouldn't stop eating meat.

Eating iron rich foods like liver or liver pate once a week - I take 1 liver supplement per day, am too sensitive to do more unfortunately

plus other red meat - eat plenty of beef, pork, red poultry etc

pumpkin seeds - every day

and dark chocolate - definitely every day, 100% cacao

plus daily orange juice or other vitamin C rich drink can help improve iron absorption - I eat plenty of fruit, e.g. blueberries, raspberries, apples, bananas, grapes. I don't do too well w citrus fruits, possibly mast cell issue.

Thank you so much for all the links, I hope to get through them all this week. I much appreciate all your help!

SlowDragon profile image
SlowDragonAdministrator in reply toPinkCat2023

You sound like you are “very much on the case” and working everything through

👍👏

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

SlowDragon you’re very kind, thank you. I feel like I’m only just beginning to learn about hypothyroidism. I’m happy to be part of this group, I’m learning a lot here.

PinkCat2023 profile image
PinkCat2023 in reply toSlowDragon

Hi SlowDragon , I've just received my thyroid test results. May I ask you to please take a look for me? Curious re my low-ish TSH and my heartburn.

***14Mar24 (75 mcg Levo per day)***

TSH 0.58 (0.27 - 4.2)

FT4 16.5 (12 - 22)

FT3 4.2 (3.1 - 6.8)

Using the information I've found online, for most people to feel their best, FT4 should be midrange (17) or a bit higher, so here's a bit of room for improvement still. FT3 should be upper quartile of the range, so ideally above 5.9, so definitely room for improvement here still.

What I can't figure out, is why my TSH is quite low? Might this have anything to do with the fact I took NDT in December? Might this be related to my stomach acid? It's been bad. Or do I maybe simply need to increase my dose from 75 mcg to 100 mcg per day?

Quick re-cap of my test results around that time:

***19Dec23 (on NDT)***

TSH 0.75 (0.27 - 4.2)

FT4 12.4(12 - 22)

FT3 4.6 (3.1 - 6.8)

***08Jan24 (on 50 mcg Levo per day) ***

TSH 1.53 (0.27 - 4.2)

FT4 12.7 (12 - 22)

FT3 3.2 (3.1 - 6.8)

***Other interim test results from today (14 Mar 24)***

Iron 14 (6.6 - 26) - down from 16.2 on 08 Jan 24*

TIBC 65 (41 - 77) - down from 70 on 08 Jan 24*

Transferrin saturation 22 (20 - 55) - down from 23 on 08 Jan 24*

Ferritin 21 (13 - 150) - up from 14 on 08 Jan 24**

25OH vit D 89 (50- 200) - was 84 on 08 Nov 23

B vitamin panel and mineral panel are both pending.

*It is worth noting I had finished my menses on 29 Dec 23, before my blood test on 08 Jan 24. My menses has just started on 11 Mar 24, so just days before today's blood test. Perhaps this has influenced my test results.

**I've been keeping at least 2 hours between eating meat and taking magnesium supplements / consuming dairy.

Can you make sense of this at all? :-)

TiggerMe profile image
TiggerMeAmbassador in reply toPinkCat2023

TSH is pretty unreliable, I'd be guided by your frees, you are right that an increase is needed perhaps 12.5mcg per day to sneak up on your optimal results

FancyPants54 profile image
FancyPants54 in reply toTiggerMe

Definitely a good idea to try a 12.5 mcg increase with these results. 25 mcg a day could easily over-do it.

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