Levo not working: Hi my Levo had stopped working... - Thyroid UK

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Levo not working

SammieK9 profile image
32 Replies

Hi my Levo had stopped working I am back to feeling cold and tired and gained fat around my middle. I take 150mcg Levo diagnosed hypothyroid 2013 thanks

TSH 4.67 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.5 (3.1 - 6.8)

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SammieK9 profile image
SammieK9
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32 Replies
shaws profile image
shawsAdministrator

Have you changed your brand of levothyroxine?

SammieK9 profile image
SammieK9 in reply toshaws

Thanks no I haven't

Nanaedake profile image
Nanaedake

Have you got latest blood test results you could share?

SammieK9 profile image
SammieK9 in reply toNanaedake

TSH 4.67 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.5 (3.1 - 6.8)

Mary-intussuception profile image
Mary-intussuception in reply toSammieK9

Reply 2

Yes, these are in your post. Do you have date they were done and have you discussed them with your GP yet?

If not, ask GP if you should be increasing by 25mcg of LT4 or is it best to wait for Nutrients levels blood tests results. Ask for urgent appointment for Nutrients tests

SammieK9 profile image
SammieK9 in reply toMary-intussuception

Dec 22 2017 for thyroid and vitamin and minerals, not discussed with GP

Mary-intussuception profile image
Mary-intussuception in reply toSammieK9

Then see your GP

shaws profile image
shawsAdministrator

You need to make an appointment to have a new blood test. The earliest possible, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test and take afterwards.

Ask GP to test TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

He or lab may not do all of the thyroid hormone ones requested but you can have those not tested through a private lab. We have two recommended ones that will do the ones the GP and they are pin-prick home tests.

SammieK9 profile image
SammieK9 in reply toshaws

TSH 4.67 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.5 (3.1 - 6.8)

SammieK9 profile image
SammieK9 in reply toshaws

Thyroid peroxidase antibodies 507.3 (<34)

Thyroglobulin antibodies 477.5 (<115)

shaws profile image
shawsAdministrator in reply toSammieK9

You have an Autoimmune Thyroid Disease called Hashimot's which is diagnosed when we have antibodies. It is the commonest form of hypothyroidism and it is the antibodies which attack your thyroid gland (they wax and wane) until you become hypothyroid.

Going gluten-free can help reduce the antibody attacks.

Nanaedake profile image
Nanaedake

You are undermedicated. Most people don't feel well until their TSH is 1 or a little lower. Increase by 25mcg and retest in 6 weeks and increase and so on until you reach the correct level that suits you.

Also, ask GP to check vitamin D, B12, folate and ferritin because unless all are optimal then levothyroxine won't work efficiently.

SammieK9 profile image
SammieK9 in reply toNanaedake

Ferritin 18 (15 - 150)

Folate 2.2 (2.5 - 19.5)

Vitamin D total 40.1

Vitamin B12 240 (190 - 900)

Nanaedake profile image
Nanaedake in reply toSammieK9

Are you taking any supplements or any other meds?

SammieK9 profile image
SammieK9 in reply toNanaedake

Waiting to find out from GP how much iron I need

Waiting for first B12 injection

Current vit D dose 800iu, been taking it for 5 years

Nanaedake profile image
Nanaedake in reply toSammieK9

800iu of vitamin D won't help a deficient mouse If in the UK there are guidelines your GP should follow. Was your vitamin D below 30 when you were diagnosed D defficient? If so you should have been prescribed loading doses of vitamin D and then an adequate maintenance dose. You need to aim for a level around 100nmol. Ask your GP for the correct treatment according to the NICE guidelines or local CCG guidelines. Local CCG guidelines will be similar.

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

You need to take magnesium and K2-MK7 with vitamin D3 in order to absorb the vitamin D effectively. Magnesium citrate is ok but there are other choices for magnesium.

naturalnews.com/046401_magn...

Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing. Your GP should check for intrinsic factor antibodies and rule out pernicious anaemia.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 The Guidelines Doctors follow

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

Ferritin needs to be at least 70 or mid-range for thyroid hormone to function properly. Have you had a full iron panel because if not, your GP needs to do one.

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

The importance of vitamins and thyroid function

americannutritionassociatio...

SammieK9 profile image
SammieK9 in reply toNanaedake

Vitamin D was 43.3 when diagnosed vit D deficient.

Yes I have symptoms of B12 deficiency.

Iron panel showed iron at 7 (6 - 26) transferrin saturation 12 (12 - 45) MCV 80.5 (83 - 98) MCHC 388 (310 - 350)

Nanaedake profile image
Nanaedake in reply toSammieK9

Ok, well GP is unlikely to increase dose of vitamin D then. You can take some extra if you buy your own. You need to be careful not to overdo vitamin D as it's stored in the body so supplement and restest in 3 months time and adjust or reduce according to results. It's trial and error. You could take 1,500iu for 3 months then retest to see if your level has risen. YOu may want to increase vitamin D supplements over the winter months.

It sounds like iron and B12 are being addressed by your GP which is good. If not then ask for advice here again.

Mary-intussuception profile image
Mary-intussuception in reply toSammieK9

If your Vitamin D was much lower 5 years ago then you should have been prescribed Loading doses to be taken over several weeks before continuing on maintenance dose. 800 IU is the lowest daily maintenance dose, it can be as much as 1000 or 2000 IU depending on the individual need.

Your 800 IU hasn't brought your levels up enough in 5 years has it? What were the comments from lab and/or GP on your December 17 result?

Will you start Folic Acid 5mg after you start Vitamin B12 injections? Were you tested for Pernicious Anemia then?

What will you do? Get all your supplements sorted then ask for TFTs to be retested?

SammieK9 profile image
SammieK9 in reply toMary-intussuception

Vit D was 43 5 years ago. GP wrote normal no action. I will start folic acid after B12 injections. Not tested for pernicious anaemia. GP wants TFT repeated in 6-8 weeks from last one

Thanks

shaws profile image
shawsAdministrator in reply toSammieK9

Do you have Pernicious Anaemia or a B12 deficiency? Ihave since read you have a B12 deficiency, which is now being treated.

Hi Sammie, when did you have these tests done and have you any results of your last test before this one and any details of change of dose?

Have you ever had Thyroid Antibodies tested (TPO & Tg) ? Do you have Hashimoto's?

What did your GP say about these results because your TSH is too high, your FT4 & FT3 at bottom of the range.

Have you ever had Vitamin D levels blood test or Calcium? B12 & Folate? Ferritin? If not ask GP to test these nutrients levels as you probably have deficiencies that require presrcribed supplements. This could be a reason your LT4 is not working for you.

If GP refuses tests or to act upon HIGH levels of TSH then ask for urgent referal to an Endocrinologist because of your symptoms and unsatisfactory TFTs.

Did anyone do any tests to check your Adrenal Function before you stated your LT4?

SammieK9 profile image
SammieK9 in reply toMary-intussuception

Thyroid peroxidase antibodies 507.3 (<34)

Thyroglobulin antibodies 477.5 (<115)

Mary-intussuception profile image
Mary-intussuception in reply toSammieK9

You have Hashimoto's Autoimmune Thyroiditis.

Have you had the nutrients tested?

SammieK9 profile image
SammieK9 in reply toMary-intussuception

All tests done in Dec 2017. GP said no action needed. Adrenal function not tested.

Mary-intussuception profile image
Mary-intussuception in reply toSammieK9

Were you diagnosed by an Endocrinologist in 2013?

Can you see a different GP at the practice?

My Endocrinologist wrote my GP that my target therapeutic level of TSH is maximum of 2. However I've learned on here of the opinion that maximum of one is preferable.

If GP refuses to treat you then ask to see Endocrinologist immediately. Failing that, ask for an appointment with the Practice Manager.

Is there anyone you can take with you to see GP? For a bit of support.

SammieK9 profile image
SammieK9 in reply toMary-intussuception

Diagnosed by GP in 2013. I can see different GP. No one to take to appointments

Mary-intussuception profile image
Mary-intussuception in reply toSammieK9

Yes, see a different GP from the one who wrote "no action needed"

SammieK9 profile image
SammieK9 in reply toMary-intussuception

Ferritin 18 (15 - 150)

Folate 2.2 (2.5 - 19.5)

Vitamin D total 40.1

Vitamin B12 240 (190 - 900)

Mary-intussuception profile image
Mary-intussuception in reply toSammieK9

Ask for tests to eliminate Pernicious Anemia.

Do you have full information on Vitamin D result?

Have you been prescribed any supplements by GP - if so what are you taking and when?

Do you take LT4 on it's own with water only, and at least 30 minutes before food and drink. Do you take supplements hours later with food or orange juice?

SammieK9 profile image
SammieK9 in reply toMary-intussuception

Vitamin D 40.1 (25 - 50 deficiency. Supplementation is indicated) no supplements except vit D 800iu I take levo on empty stomach an hour before food and drink.

Mary-intussuception profile image
Mary-intussuception in reply toSammieK9

As your Vitamin D level has dropped in 5 years on 800 IU - clearly this isn't enough supplementation.

I would point that out to the GP you see . Take all your results with you, including the old ones. It will be quicker than GP searching back through your computer records.

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