Very low TSH and sleeping lots after encouraging start on Levo+Metavive - Need advice on next steps/tests and managing GP

[halforange]

Hi everyone, In 2021 I tested positive for thyroid antibodies and the endocrinologist (NHS) refused to do anything about it because my thyroid hormones were within normal parameters. He said I was menopausal and best to explore HRT with the menopause clinic. So I did, and for 3 years I used gels, patches, Mirena, testosterone you name it. Nothing would help with my lack of energy, fatigue and inability to lose weight. My thyroid antibodies kept going up.

In January this year I managed to persuade my GP to put me on a low dose of Levothyroxine (I still cannot believe she agreed!). She started me on 25mg and I also put in place a comprehensive protocol of vitamins and minerals, and Metavive I (GP was happy with this too).

It might have been placebo effect but I could feel more energetic a few weeks after starting the treatment with Levo and Metavive. I also noticed I stopped losing lots of hair and I was no longer fatigued.

The reason I'm posting is because I just got my latest results and I'm worried my GP will want to stop the "trial" because my TSH is very low.

I'd really like to know what you think and also, what private tests I could do (cortisol? reverse T3?) so I'm well prepared to fight my corner during my next appointment with the GP.

In terms of my current symptoms, I noticed I'm sleeping quite a lot (10 hours a day - this is relatively new) and I don't have much energy. I've also been fighting recurring thrush. Seems to be under control now after taking fluconazole for 6 weeks.

I'm now on 2x Metavive I and 50mg of Levothyroxine/ day.

I'm also taking: Candesartan (4mg/day for my blood pressure), Vitamin C (1000mg/day), Cq10 (200mg/day), Omega 3 (350mg, of which 120mg is DHA, 170 mg EPA), Magnesium glycinate (2 x 500mg/day providing 200mg elemental magnesium), L-theanine (400mg/day), Alpha GPC (400mg/day), NAC (600mg/day), Selenium (200ug/day), Choline (350mg/day), Zinc + Copper bisclycinate (25mg and 1mg/day), Kelp capsules (259ug/day), D3: 10ug, B1 (Thiamin): 1.4mg, B2 (Riboflavin): 1.4mg, B3 (Niacin): 18mg, B6: 2mg, Folic acid: 200ug, B12: 2.5 ug, Biotin: 150ug, B5 (Panthotenic acid): 6mg, PABA: 30mg/day.

Am I missing something? Folic acid perhaps? Also, would it be a good idea to add Adrenavive?

My hormone levels are on the attached jpg.

I'm so tired of living with no energy... I really hope someone here can help me.

Thank you!

[SlowDragon Administrator]

Pity you started the Metavive as it has significantly lowered your TSH and turned your own thyroid output off

So with extremely low TSH it’s going to be difficult or impossible to get GP to increase your Levo up to 75mcg

what’s the range on Ft4 and Ft3

Was testing early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you taking

Standard treatment is to start on 50mcg Levo and increase dose slowly upwards in 25mcg steps until ….

Symptoms improve, Ft4 is at least 60% through range and ideally Ft3 at similar percentage and vitamin levels tested and optimum

Typically dose levothyroxine is increased up to approximately 1.6mcg per kilo of your weight per day …..unless extremely petite that’s going to be at least 100mcg per day

ESSENTIAL to test vitamin levels

What were most recent

Vitamin D, folate, ferritin and B12 levels

Kelp is definitely NOT recommended

Have you had coeliac blood test before trialing strictly gluten free diet

Are you also on dairy free diet

[halforange in reply to SlowDragon]

Thanks for your reply SlowDragon. GP didn't want to start on 50mg and only agreed to start on 25, then moved up to 50 after 6 weeks. She is keen to help me but I don't know what to expect now that TSH is 0.04. I don't have any recent results for Vit D, folate, ferritin and B12 levels. I guess I should start there (need to find a reputable online lab). Hormone testing was at 9am (fasting), last levo was over 24hs before the test. Current free T4 14, Free T3 4.8. You can see these and all historic values on the image on top of my initial post. I didn't know kelp wasn't recommended, thanks for that. Non celiac, not gluten intolerant, plant-based diet. Do you think it would help stopping the Metavive? Brand of Levo is Hillcross. Thanks!

[SlowDragon Administrator in reply to halforange]

So on plant based diet essential to test FULL iron panel as well

Suggest you use Medichecks for both

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

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

endocrinenews.endocrine.org...

In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

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

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-5 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

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

You could negotiate with GP …..say if they will increase levothyroxine to 75mcg you will reduce Metavive by half

Hillcross is just a box

Different brands inside at different tablet sizes

25mcg is Teva brand - upsets many people

50mcg is Accord brand

[halforange in reply to SlowDragon]

Thanks again. Yes, Levo brand is Accord. I can delay seeing the GP but I'm not sure what to do in the meantime to help my situation/levels/improve my chances of GP wanting to continue with this trial. I thought I could reduce Metavive to 1/day for a few weeks and then see the GP but I've got no idea if that's what's needed - would that increase TSH? Thanks for the links and tips on how to prepare for testing!

[SlowDragon Administrator in reply to halforange]

It can take some time for TSH to respond

Suggest you get vitamin levels tested while you consider your options

[SlowDragon Administrator in reply to halforange]

On a plant based diet did you not get full vitamin testing BEFORE starting on any thyroid hormone replacement

Low iron/ferritin is strongly linked to fatigue

[halforange in reply to SlowDragon]

No, I'm afraid the GP didn't check my vitamin levels before starting me on levothyroxine. Having said that, I'm pretty sure my ferritin level has been checked several times in the past few years. Not 4 times a year though and certainly not recently so I'll order the full iron panel, plus Vitamin D, folate and B12.

[SlowDragon Administrator in reply to halforange]

As a vegetarian or vegan it’s especially important you retest yourself at least annually

[halforange in reply to SlowDragon]

Very true. I've reduced Metavive to 1 capsule/day and completely stopped the kelp supplement. I'm having all the tests we discussed done next week (also stopped B complex till then). Not currently on iron, testing for that too. I've got enough Levo to last me another 5 weeks. Hopefully by then TSH will have gone up ever so slightly and the GP will agree to keep me on 50mg for another few weeks before reconsidering.