Prescribed ERFA by private endocrinologist

[marlathome]

I've been prescribed ERFA by a private endocrinologist amazingly and I've been taking it instead of Levo for 4 days. I still feel crap - exhausted as soon as I get out of bed, awful brain fog and total lack of motivation to do even the simplest of tasks, sweats, mucous etc., etc. Am I being unrealistic in hoping that these same symptoms I was having with Levo would diminish now that I'm on NDT or will it take longer? I'm so desperate to feel better. Also my ears have become totally blocked with wax in the last week so now I can barely hear. I feel as though I'm living in a sound-proofed bubble.

Thoughts and advice gratefully received.

[SeasideSusie Remembering]

marlathome

What guidance have you had from the Endo?

How have you transitioned from Levo to Erfa?

How much Levo were you taking, how much Erfa now?

Your body has to get used to the T3 in Erfa - gradually.

Also my ears have become totally blocked with wax in the last week so now I can barely hear. I feel as though I'm living in a sound-proofed bubble.

Possibly not connected, have you seen your GP?

[marlathome in reply to SeasideSusie]

Endo told me to stop Levo the day before I started taking ERFA. I was on 100mcg Levo a day. I'm now taking 2.5 grains of ERFA in 3 separate doses. I have taken NDT before - Thiroyd from Thailand but the brain fog was truly debilitating so I went back to Levo which didn't really help so I made the decision to go privately.

Like most NHS GPs, mine was unable/unwilling to monitor my progress on anything other than Levo. At least if I'm paying I'll get the answers I'm looking for hopefully, even though I'm against private medicine in principle.

The blocked ears have been a recurring problem since my thyroid was removed. I think there is a definite connection.

[SeasideSusie Remembering in reply to marlathome]

The blocked ears have been a recurring problem since my thyroid was removed. I think there is a definite connection.

If it's wax building up, I don't know if it is connected. Have you had this looked at by your GP?

My understand of changing from Levo to NDT is that you start on low dose for the first week to see if you have an adverse reactions and to adjust to the addition of T3 (which can cause palpitations, etc, in some people), then gradually increase. You might find this article interesting

stopthethyroidmadness.com/n...

1. If on T4 like Synthroid or Levothyroxine, a lot of patients have reported taking it a final day…

2.…then the next day, patients start on natural desiccated thyroid.

3. A common starting dose is one grain/60 mg.

4. Patients then raise by 1/2 grain every two weeks or so, as long as their are no negative symptoms.

5. Negative symptoms while raising usually point to inadequate iron or a cortisol problem

6. Patients slow down somewhere in the two grain area to do labs, then tweak/raise if needed, many state.

7. It’s common, say years of patient reports, to end up in the 3-5 grain area when optimal, though some are slightly less, some slightly more.

You should have had vitamins tested before changing over, were Vit D, B12, folate and ferritin tested? These all need to be optimal.

[marlathome in reply to SeasideSusie]

Had thyroid levels checked 4 weeks ago by GP who wouldn't test t3 or repeat any of the vitamin tests as he said they were fine when last tested! The endo has asked for comprehensive bloods to be done when I've been on ERFA for 2 months and then follow up appointment. He's also testing adrenals, full vitamin panel, parathyroid and more that I can't remember. I don't suppose my GP will be happy about any of this as he refused to refer me to an endocrinologist on the NHS - apparently there is "No clinical justification for a referral". I want to call him something rude at this point but will settle for proving him wrong.

I have been supplementing with D3 and B12 for the last 6 months. Folate and/or ferritin supplements cause constipation so I stopped taking them.

Thanks so much for your input.

[SeasideSusie Remembering in reply to marlathome]

I have been supplementing with D3 and B12 for the last 6 months. Folate and/or ferritin supplements cause constipation so I stopped taking them.

It's important, when supplementing, to keep an eye on levels. B vitamins are water soluble so excess is excreted but you can waste money taking them if you don't need them or if taking too much. Also when taking B12 we need a B Complex to balance all the B vitamins.

D3 is fat soluble and doesn't get excreted so any excess gets stored and can build up to toxicity level. It's important to test twice a year when taking D3 to check levels and keep within the levels recommended by the Vit D Council and Vit D Society, i.e. 125nmol/L and 100-150nmol/L respectively. Also, D3 has important cofactors (particularly Vit K2 and magnesium) as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

Did your last test show low ferritin? There are other ways to raise ferritin if iron tablets don't suit, in particular eating liver, liver pate, black pudding and other iron rich foods - apjcn.nhri.org.tw/server/in...

[marlathome in reply to SeasideSusie]

I do eat liver pate but I'll take a look at the link you provided. I can't take vitamin k because I've recently been diagnosed with atrial fibrillation and put on anti-coagulants. I also take Magnesium Bisglycinate daily. I don't think ferritin was low on the last test but folate, D3 and B12 were very low. I'm hoping that with this new endocrinologist keeping a check on things that I won't be fobbed off like I have been by my GP. Thanks again so much for your advice - I really appreciate the time you have taken.

[shaws Administrator in reply to marlathome]

I have read that 1 grain of NDT is equal to around 100mcg of levothyroxine in its 'effect'. So you are taking at present the equivalent dose of 250mcg of levo. Maybe the following will be helpful - i.e. safely getting well:-

naturalthyroidsolutions.com...

[SlowDragon Administrator]

You can go "deaf" temporarily when hypothyroid

Seven months ago your folate, B12 and vitamin D were all terrible

healthunlocked.com/thyroidu...

Have you been supplementing to improve these?

Had levels retested?

Vitamins need to be OPTIMAL for FT4 or FT3 to work well

What vitamin supplements do you currently take?

Was thyroidectomy due to Graves' disease?

If so are you on strictly gluten free diet

[marlathome in reply to SlowDragon]

Thanks SlowDragon

I've been supplementing with D3 and B12 for6 months. Ferritin and/or folate cause constipation so had to discontinue.

I had Hashimotos with painful nodules prior to thyroidectomy and was hyperthyroid for about 2 months which reversed following thyroidectomy. I have adopted a gluten free diet and the endocrinologist suggested I go low carb to address weight issues. He thinks I'll lose weight more easily when medicated properly.

[SlowDragon Administrator in reply to marlathome]

It is the iron supplements that often causes constipation

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

Low FERRITIN and hypothyroidism is often linked

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

Important to keep all B vitamins at good levels

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Yes I have found low carb diet (plus absolutely strictly gluten free) plus the addition of small dose of T3 have all helped with weight loss, and slowly over last two years, managed to lose over 2 stone

[godsfool]

Hiya Marlathome, Can you please private message me your endocrinologist's name so I can get some Erfa or Armour? I can't seem to find a doctor who will prescribe it to me. Cheers!