Thyroid UK
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Newbie

Hi I seem to be waiting a long time to feel better again on 50mcg levothyroxine, was diagnosed 2011 with hypothyroid. Symptoms are

Feet feeling cold

Losing hair

Hard stool every day

Sweats

Low heart rate

Weight gain

Pins and needles in feet

Dry skin

Tiredness

Headaches

Flaky nails

Periods becoming longer and heavier

Am I likely to be undermedicated on 50mcg levothyroxine? Highest dose I have been on is 175mcg

Thanks

TSH 6.32 (0.2 - 4.2)

Free T4 13.5 (12 - 22)

7 Replies
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CathK

Why was your dose reduced?

You are currently undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

Have you had thyroid antibodies tested?

Have you had vitamins and minerals tested

Vit D

B12

Folate

Ferritin

Iron Panel

Full blood count

Post any results with reference ranges.

Reply

Dose was reduced because endo didn't believe my symptoms were thyroid related and wanted to see if they were by reducing it back down to 50mcg. TSH was 1.29 (0.2 - 4.2) free T4 19.2 (12 - 22) free T3 4.0 (3.1 - 6.8)

TPO antibody 910.5 (<34) private test

TG antibody 278.3 (<115) private test

I supplement but whatever I take doesn't raise my levels

Thanks

Reply

CathK

Unfortunately, all that you say is very familiar, we are seeing it on the forum almost daily. You have an endo who is most likely a diabetes specialist (most of them are) who hasn't got a clue about how to treat thyroid disease.

Dose was reduced because endo didn't believe my symptoms were thyroid related and wanted to see if they were by reducing it back down to 50mcg. TSH was 1.29 (0.2 - 4.2) free T4 19.2 (12 - 22) free T3 4.0 (3.1 - 6.8)

How cruel and sadistic to play around with your dose like that. Those results show that you needed T3 added to your Levo because you weren't converting properly. Your FT4 was in the upper part of it's range but your FT3 was very low in range, FT3 should be in balance with FT4 at the upper end of it's range when on Levo, if that is where you feel well. Poor conversion, like you have, needs the addition of some T3.

**

You also have autoimmune thyroiditis aka Hashismoto's, as confirmed by your high antibodies. This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. Most doctors don't attach any importance to antibodies nor do they realise how Hashi's affects the patient so you need to read, learn, understand and help yourself where this is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help. Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

**

Hashi's and gut/absorption problems tend to go hand in hand and nutrient levels are often low or deficient. Supplementing for them often doesn't make much difference due to the absorption problem so that needs to be addressed so that you can bring nutrients up to optimal levels (not just in range) and then thyroid hormone has a chance of working.

Check out SlowDragon's reply to this post for information and links about how to help absorption problems healthunlocked.com/thyroidu...

**

Please post your vitamin and mineral results, say what you are supplementing with and the dose. We can see if you are actually being given the right treatment.

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Reply

Done Nov 2017

Ferritin 34 (30 - 400) waiting for iron infusion for anaemia because I can't absorb iron tablets

Folate 2.32 (2.50 - 19.50) stopped folic acid until B12 injection has been done

Vitamin B12 247 (190 - 900) first B12 injection given June 2017, to take every 3 months and waiting to be booked in for next one

Vitamin D total 35.1 (25 - 50 vitamin D deficiency supplementation is indicated) waiting on level of vit D to improve on 800iu. Been waiting since 2014 when level was 28.7

Reply

CathK

Ferritin 34 (30 - 400) waiting for iron infusion for anaemia because I can't absorb iron tablets

Well, that's being dealt with but you can still help raise your level and keep it there by eating liver regularly.

**

Vitamin B12 247 (190 - 900) first B12 injection given June 2017, to take every 3 months and waiting to be booked in for next one

Did you have loading doses? Usually 6 over 3 weeks? Your injection was 5 months ago and you should have them every 3 months - chase them and make a nuisance of yourself, this is YOUR health they're messing about with.

**

Vitamin D total 35.1 (25 - 50 vitamin D deficiency supplementation is indicated) waiting on level of vit D to improve on 800iu. Been waiting since 2014 when level was 28.7

You should have had loading doses back in 2014 when your level was 28.7 - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

800iu will never in the reign of pig's pudding raise your level. It's doubtful whether your GP will now raise your prescription dose, it's worth asking considering you should have had the loading doses 3 years ago, but to be honest D3 is very cheap you might just as well buy your own supplement, it will probably be better anyway.

The Vit D Council recommends a level of 100-150nmol/L.

My suggestion is to take the equivalent of the loading doses you should have had, that is 10,000iu D3 daily for 4 weeks (280,000iu) then reduce to 5000iu daily and retest 3 months after starting supplementing. Once you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

Normally I would suggest D3 softgels but as you have Hashi's an oral spray is better absorbed. Take a look at BetterYou who do 3000iu and 1000iu doses. Start with the 3000iu dose and triple dose (so 9000iu daily) for 4 weeks then double dose (so 6000iu daily) until the 3 months is up then retest.

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

BetterYou do a D3/K2-MK7 combination spray which would save you buying a separate K2 supplement.

**

But before any of your nutrient levels can improve, you need to address the gut/absorption problems as mentioned.

Reply

Thanks I am meant to be on iron tablets but the GP doesn't understand I can't absorb them so waiting until next appointment to be referred for iron infusion. No loading dose for B12, straight into 1 injection every 3 months

Reply

CathK

Did you have signs of B12 deficiency b12deficiency.info/signs-an...

If so then you should have had regular B12 injections not start on 3 monthly ones. If you pop over to the Pernicious Anaemia Society they can give further advice healthunlocked.com/pasoc

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