Help with results and medication: hello, I... - Thyroid UK

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Help with results and medication

Courtney96 profile image
14 Replies

hello,

I have been on 25-50 mcg of thyroxine ever since I had post partum thyroiditis 3+ years ago. My levels were ok so I just stopped there, I have never felt well at all and have really struggled with an array of symptoms ever since. I am unable to work because of the symptoms and struggle with just general life. 

I thought maybe I am not on enough so recently upped it to 75, I had it tested after about 3 months on it and my levels were showing potentially too much medication. Beside the levels I started feeling very unwell on this amount. 

These were my most recent levels-

TSH 0.05 [0.27-4.5]

T4 20.1 [11-23]

(My previous results on 50mcg wasn’t done on the protocols you advise on here so not sure it’s worth comparing them but they was always around tsh 1.2 and t4 15.5)

I know it’s not ideal that t3 wasn’t tested but these bloods weren’t specifically done for thyroid so I’m not surprised dr didn’t test this. (I do seem to convert well). The reason for the bloods was to check over everything as a whole. On these results I had an positive homogenous ANA pattern and the result was 1:160.

Is that something that occurs with autoimmune thyroiditis or could this mean I’m suffering with something else?

I guess I’m just so confused as to why thyroxine doesn’t improve anything at all and when I surpass 50mcg I feel extremely unwell. Is it possible for 25-50mcg to be my end dose? Thanks in advance for any comments or advice. Courtney 

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14 Replies
SlowDragon profile image
SlowDragonAdministrator

which brand of levothyroxine was 50mcg

Which brand is 75mcg

Suggest you stay on current dose levothyroxine and get TSH, Ft4 and Ft3 tested along with vitamin levels

You need to retest vitamin D, folate, B12 and ideally full iron panel test for anaemia as ferritin was very low at 35 two months ago

EXACTLY what vitamin supplements are you taking

Courtney96 profile image
Courtney96 in reply toSlowDragon

My Ferritin was still 33.8 [20-130]- I’m struggling to up it?!

Folate has now increase to 9.4 [2.0-18.7]

I’ve never had a problem with B12I have Spatone for my iron and vit d spray at 4000 iu

My thyroxine was accord for both amounts. I tried liquid thyroxine before too and that didn’t help. I have tried another brand of thyroxine a while ago and also didn’t help, I have also tried a very strict elimination diet which didn’t help. I have been gluten free for 1+ year but stopped as I was seeing no benefit whatsoever. I’ve been tested for coeliac before and negative (I was eating gluten at the time) 

 I know I have an autoimmune thyroid problem but I wanted to know if you have heard of the ANA being positive in thyroiditis or if that is normally something separate? Wondering if part of my symptoms aren’t even related to thyroid

SlowDragon profile image
SlowDragonAdministrator in reply toCourtney96

Obviously ferritin is still terrible

Being on inadequate dose levothyroxine results in low iron/ferritin

Low iron/ferritin results in poor conversion of Ft4 to Ft3…..leading to lowerTSH and higher Ft4….and low Ft3

Low Ft3 results in lower vitamin levels

Lots of members having good results with Three Arrows iron

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 

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

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.

healthunlocked.com/thyroidu...

Effective supplement 

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...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

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...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

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...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

Are you taking daily vitamin B complex?

Courtney96 profile image
Courtney96 in reply toSlowDragon

I will try a different iron now as I am having no hope, thank you for the recommendation.

I don’t take a b complex now, with my results is that recommended?

SlowDragon profile image
SlowDragonAdministrator in reply toCourtney96

Folate has now increase to 9.4 [2.0-18.7]

Folate 9.4 Range 2 - 18.7)

Only 44.31% through range

To improve 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

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 

Other options 

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)

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

high B12 can be misleading

Paradoxical B12 deficiency 

b12oils.com/paradoxical.htm...

Steph1122 profile image
Steph1122

hi I am in exactly the same position as yourself, I have been on 50mch of levothyroxine even since I was diagnosed with hypothyroidism at 18 years of age and I am 35 now then in 2019 I was diagnosed with hyperthyroidism and levels were all out of sync and put me on carbimazole for roughly 8 weeks then went gravely hypo again.

I am now on 75mcg of levothyroxine after that ever since that episode of hyper I had in 2019.

My latest results were

TSH 0.100 (0.27-4.2)

T4 24.8 (9-25)

Courtney96 profile image
Courtney96 in reply toSteph1122

it’s interesting that it can change so much.

Do you feel well now?

Steph1122 profile image
Steph1122 in reply toCourtney96

no not really, I get palpitations every day, feel breathless absolutely starving all the time and I’ve lost around 2.5kg in a week. I had some more bloods taken on Saturday so I will call the docs tomorrow to see if they have improved at all, how do you feel?

Courtney96 profile image
Courtney96 in reply toSteph1122

oh sorry to hear that! I hope the bloods are helpful in getting you feeling better. I feel horrific, I have so many symptoms that I just wouldn’t know where to start. My balance is not good and my whole body just feels so unwell atm 😬 it’s been a very long road I’m hoping to see some light at the end of the tunnel soon. Take care

SlowDragon profile image
SlowDragonAdministrator in reply toCourtney96

poor balance offer low B12

Especially if feel like walking on small rocking boat

What’s your most recent B12 result

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 and add a separate vitamin B Complex after a week 

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 

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...

Steph1122 profile image
Steph1122

hi courtney96 hope your well?

I’ve recently had my TSH checked it’s now gone from 0.100 to 7.98

How is your thyroid?

Courtney96 profile image
Courtney96 in reply toSteph1122

hello Steph1122 . Wow that’s a big jump for tsh, was that on same dose thyroxine aswell? How are you feeling?

I’ve been pretty rough past few months. Tsh is still surpressed I went up to 75mcg and tsh was 0.02 so went to 62.5mcg and was still 0.09 so been told to go back to 50mcg but my body feels so weird and unwell on it and now I think all the changing doses has really upset my body. I seem to be very sensitive to it. Struggling to understand how 50mcg can be too much when it’s a starting dose?

All very confusing and thinking maybe I don’t need it because after all it was post partum that it kicked off but after the stories on here I’m terrified of coming off!

Steph1122 profile image
Steph1122

yes that was on levothyroxine 75mcg now gp has told me to take 75mcg every other day and 100mcg on the rest of days so alternative days. I’m feeling so tired all the time my joints ache I’ve got brain fog so hoping increasing it every other day will help but we will see 🤷‍♀️.

So yours was post partem? Do you know what your ranges are by any chance?

am111 profile image
am111

from your TSH and FT4 levels, it appears you are taking too much of a dose. Thyroid sometimes repairs itself, so this is what may have happened to you.

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