Levothyroxine stopped by GP: Hi I have Hashimoto... - Thyroid UK

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Levothyroxine stopped by GP

ccg123 profile image
9 Replies

Hi

I have Hashimoto’s and have been taking 25mg levothyroxine since diagnosis about four months ago. This was prescribed by my private rheumatologist. She asked my GP to send me to an Endo, and the Endo disagreed that I should be on levothyroxine.

I was having trouble getting my prescription this week at Boots so went to the doctors to find out that they’ve cancelled it Without telling me. Any ideas what I can do? I have asked the GP to call me tomorrow. Can I ask for a second opinion with a different Endo. My TSH was at 3.2 before I took the pills and it’s now down to 1.2 so I assume it is doing its job. Any thoughts would be appreciated.

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ccg123
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rjb112 profile image
rjb112

Can you post your free T4 and free T3 results, that go along with the TSH of 3.2 and 1.2? With the lab's reference ranges?

ccg123 profile image
ccg123

Original Results

Thy P antibodies 39.8 lU/ml (<9.0)

Free T3 6.5 pmol/L (4.2-6.9)

Free T4 11.1 (7.7 -20.6)

TSH 3.22 mlU/L (0.30 -4.8)

Results after taking levothyroxine

T4 15.4 pmol/L (12.0 - 22)

TSH 1.51 miu/L (0.27 - 4.2)

T3 not recorded

Many thanks.

SlowDragon profile image
SlowDragonAdministrator in reply to ccg123

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Have you had vitamins tested?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Are you on strictly gluten free diet?

If not ask GP for coeliac blood test and vitamins

ccg123 profile image
ccg123 in reply to SlowDragon

Hi SlowDragon

Thank you for your email. I did have a vitamin D deficiency which was picked up a couple of years ago before anything else but it is okay since I take supplements. I was also tested for coeliac's several years ago and that was negative. I have cut down on gluten but I am not gluten-free. I currently have my tests done at the hospital. I don't have any vitamin tests from the original results I showed above but on the new results the following which all came back saying they were normal:

Serum ferritin 45.5 UG/L (13.0-150.0)

Serum vitamin B12 274NG/L (197 - 771)

Serum folate 6.2 UG/L (3.9 - 26.8)

Many thanks

CCG

SlowDragon profile image
SlowDragonAdministrator in reply to ccg123

All these are too low, but not low enough for GP to prescribe

Ferritin needs to be at least half way in range. Eating liver or liver pate once a week should help improve

B12 and folate work together, both are low.

Do you have B12 deficiency symptoms?

b12deficiency.info/signs-an...

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. B vitamins best taken in the morning after breakfast

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

What about vitamin D level? How much do you supplement?

Improving all these may raise TSH, so that your need for Levothyroxine can be recognised

Just reducing gluten is not enough, if gluten is an issue. It does need to be absolutely strictly gluten free

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

ccg123 profile image
ccg123 in reply to SlowDragon

Hi SlowDragon

Thank you so much for your reply, very interesting. The reason I had those vitamin tests done was because of bad period fatigue during the last few months which was making me need to lie down for about three days during my period. I decided to buy a vitamin mix which included things like B12 etc - I have taken it for a month and this month I didn't get the fatigue so I wonder if it's all related?

I do have other symptoms on the B12 deficiency list - I was recently diagnosed with GERD which I think I have had for about six years but only got diagnosed because I'm now having problems with my voice cracking up and sounding croaky. I also have parathesis in my feet for which I am waiting on neurology appointment in January.

I take five UG of vitamin D per day.

Thank you so much for this insight.

CCG

SlowDragon profile image
SlowDragonAdministrator in reply to ccg123

Low stomach acid is common hypothyroid symptom

5ug is only 200iu - that’s a minute dose

Suggest you retest ASAP

SlowDragon profile image
SlowDragonAdministrator

Vitamin levels will drop further if Levothyroxine is stopped

vitamindtest.org.uk

Costindinu profile image
Costindinu

It is because some doctors treat lab reports, not patients! According to old range limits of TSH you are “fine“...Afro Americans who don‘t get Hashimoto‘s (most frequent cause of hypothyroidism) have a TSH 1-1.2, which suggests a lower limit of max 2 for TSH. Of course free T4 and free T3 should be checked too. Most important is how your hypothyroidism symptoms have subsided under the 25 mcg of levothyroxine. Of course you have to look after a doctor who listens to your voice! You are the patient!

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