Further to my last post about Levo and joint pa... - Thyroid UK

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Further to my last post about Levo and joint pain I now need help to understand my blood results.

Jacarilla profile image
15 Replies

I had some very helpful advice and info to my last post culminating in it being suggested that my Endo didn’t know what he was doing (and rightly so I think) so I d just requested and received a full blood test. I need help to understand it please.

Summary background:

Thyroid removed last august - benign tumour

Started on 100ml levo (Eutirox)

Started having night sweats and anxiety in Dec

TSH 0,74,

T4L 1,57.

Endo reduced my dose to 75mg because he said my symptoms suggested hyper

Next Results in jan (he didn’t test T3)

T4 libre suero. 1.68 ng/dl (0.78 - 1.80)

TSH. 4.53 μUI/ml (0.35 - 5.50)

He said this was fine

Now suffering joint pain, muscle aches and low energy / tiredness. So returned and asked for full blood test. These are results - my endo has now increased my dose to 88mg

T4 libre suero. 1.16 ng/dl (0.78 - 1.80)

T3. 1.85. pg/ml (2.0- 4.4)

TSH. 6.75. μUI/ml (0.35 - 5.50)

Ferritin. 151. ng/ml(15 - 150)

Folic acid 3.64 ng/ml (0.35 - 3.37)

B12. 317 pg/ml (221 - 911)

Vit D. 29.06. ng/ml (20 - 50)

Calcium. 8.5. (8.6 - 10)

Clearly I am under medicated but when I was on 100mg (during the first 3 months after surgery) I developed unpleasant side effects. Just started increased dose of 88mg.

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Jacarilla
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15 Replies
pennyannie profile image
pennyannie

Hey there again ;

Further to my previous reply I think if I were you I'd look for another endocrinologist as clearly this is going to be a long uphill struggle with the one you have and presume your confidence in this individual now nonexistent.

Jacarilla profile image
Jacarilla in reply topennyannie

Hi pennyAnnie, no I have no faith in him and will be looking for another endo. Just want to know if my dose increase is taking me in the right direction of if I’m having trouble with conversion or even if the brand of levo doesn’t suit me (if that’s a possibility)! And also if my vitamin results look ok and do I need supplements. I am new to this and am still learning. ;)

pennyannie profile image
pennyannie in reply toJacarilla

Well, yes I know, it's all a bit over whelming when you start but it's essential that you become your own best advocate so don't waste time and money on people who presume to know better.

As for whether your T4 suits you or not, I can't help there :

All I can add is that on UK ranges - I now maintain my ferritin at around 100 : folate at around 20 : active B12 75 ++ ( serum B12 500 ++ ) and vitamin D at around 100.

So there might be something there to consider though not sure how UK ranges compare to Spanish ranges but we need to be a good 50% through to be considered optimal.

Jacarilla profile image
Jacarilla in reply topennyannie

Thanks pennyannie :) 50% through range is an easy to understand benchmark :) I appreciate your help

SlowDragon profile image
SlowDragonAdministrator

Get bloods retested 6-8 weeks after latest increase to 88mcg

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Meanwhile working on improving low B12 and low vitamin D

What vitamin supplements are you currently taking

Looking for Vitamin D around 40ng/mL (100nmol in U.K. units)

B12 at least over 500

Jacarilla profile image
Jacarilla in reply toSlowDragon

Hi slowdragon, I’m only taking calcium 500mg and magnesium glycinate 260mg daily I was taking a combined b1,b6,b12 but endo told me it wasn’t necessary! I also take a vit D once a month (hidroferol) 0.266mgI followed advice and had my blood taken at 8am before taking levo and 24 after last dose. That’s what gave the results above.

Jacarilla profile image
Jacarilla in reply toSlowDragon

Sorry slowdragon, I meant to say, should I be concerned about my calcium level and is it ok to take calcium tablets ? I’m lactose intolerant so struggle with a lot of dairy. I think I read that calcium tablets are not good ?Also my top of range ferritin and folic acid - is that ok?

I manage my prediabetes with diet so I’m trying to work out how to cover all bases. Thanks so much for your help - it’s very much appreciated :)

SlowDragon profile image
SlowDragonAdministrator in reply toJacarilla

Calcium levels should improve as vitamin D levels improve

When taking calcium supplements make sure you test calcium, vitamin D regularly

Are you taking a folate supplement or folic acid?

Ferritin

What age are you…..if post menopause ferritin often rises

Have you had thyroid antibodies tested before thyroidectomy?

Jacarilla profile image
Jacarilla in reply toSlowDragon

No not taking folic acid or follate and yes just about post menopause but taking HRT. I’m 59.I’m not aware of having thyroid antibodies tested ? I don’t even know what these are … apologies for my ignorance? Is this something I should be requesting?

SlowDragon profile image
SlowDragonAdministrator in reply toJacarilla

thyroid.org/patient-thyroid...

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Jacarilla profile image
Jacarilla in reply toSlowDragon

If I understand correctly what I read in the links I wouldn’t have antibodies now as I don’t have a thyroid. Are you suggesting that I should have been checked for thyroid disease before my thyroidectomy?

SlowDragon profile image
SlowDragonAdministrator in reply toJacarilla

Yes should have been tested pre thyroidectomy

You could possibly still have antibodies

Stongwave profile image
Stongwave

Start your temperature measures before getting up, immediately after waking up, but not electronically thermometur. It should be 36.6 or 36.7, on it you will find how is your metabolism and not so much on the test, because these are only figures, but are important symptoms and temperature.

Jacarilla profile image
Jacarilla in reply toStongwave

This is interesting as I always seem to be warm ??

Stongwave profile image
Stongwave

It doesn't matter that you're warm. Measure it for at least 10 days. If you're more than 36. 7 so your hormone is too much, if it's a 36.6 , the hormone isn't enough for you, although if you take and T3 and it is relevant in that the temperature is within normal range.

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