Buying ERFA online: I would appreciate it if... - Thyroid UK

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Buying ERFA online

snugglemonkey profile image
10 Replies

I would appreciate it if someone would PM me with details on how I can buy ERFA online without prescription.

Just to give you some background, I have had typical hypothyroid symptoms for many years now. My blood results do not present as primary hypothyroidism. My latest blood results are:

TSH 0.71 (0.27-4.2)

Free T4 12.2 (12.0-22.0)

Free T3 5.8 (3.1-6.8)

I could have secondary hypothyroidism caused by sub-optimal pituitary function, although this is a rare condition according to my GP.

I have done the necessary in order to supplement my folate, ferritin, iron levels. A recent 24hr saliva adrenal profile test revealed sub-optimal cortisol levels/adrenal function, so have been supplementing with Nutri Advanced AdrenoMax.

For the past 8 weeks I have been on ERFA. I started on 15mcg and have increased the dosage every 2-3 weeks. Currently I take 75mcg daily, split into two doses. I have felt an improvement in my symptoms of around 15-20%. I suspect that I have been hypo for many years and, although initially disappointed, have now accepted that my adrenals will take some time to recover and this will affect how effective I experience the ERFA.

I want to continue to take ERFA and increase gradually by around 15mcg every 2-3 weeks but my Doctor, who I am seeing privately, told me that I should be feeling a 30%-40% improvement and wants me to stay on 30mcg until I see him next in August.

When I stayed on 30mcg I started feeling hypo again after around 3 weeks but felt better again once I increased it by 15mcg. I have not told my private Doctor about the increases!

I am due to see an NHS Endocrinologist next month because my testosterone levels are at rock bottom.

I do not want to reduce my ERFA to 30mcg. I suspect that until my adrenal function improves (and possibly my testosterone) my recovery will be slow but steady. Due to my history of emotional and psychological issues my GP, and increasingly my private Doctor, seem to be looking more at Chronic Fatigue Syndrome. I understand and respect both these health professionals but I believe this diagnosis is wrong

The ERFA is making a difference and I want to continue with it.

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snugglemonkey
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10 Replies
Clutter profile image
Clutter

Snugglemonkey, do tell your private doctor how much Erfa you're taking when you see him in August otherwise you're wasting your time and money. Prepare yourself for the endo to tell you NDT is dangerous rubbish with uncontrolled levels of hormone. If he does tell him that there have been numerous recalls of Levothyroxine due to quality issues. PM on its way.

snugglemonkey profile image
snugglemonkey

Thank you so much Clutter.

I will come clean with my private Doctor when I see him in August. I am prepared for a less than accepting response from the NHS Endo next month.

All the best and Thank you again,

Carl

Jackie profile image
Jackie

Hi Your FT3 is fairly high in range, Erfa contains T3, so dangerous to increase without a further blood test. Thyorid meds build up in the body and can take a year to feel the max effects. It should be slowly. I was overdose like this by a private doc on amrour.You may find Erfa and a little T4 helps but depends on bloods, Increases should be 6 weekly or more after blood tests.When was overdose and very ill I saw my Endo who halved the meds and I was good. Sometimes the effects of hypo re idemtical to hypo. Mine are.

Best wishes,

Jackie

snugglemonkey profile image
snugglemonkey

Hello Jackie,

Thank you so much for your reply. I think your point about potential T3 toxicity is one I need to be mindful of. I shall be having my bloods taken every 6-8 weeks in order to avoid a scenario like this.

All the best,

Carl

Glynisrose profile image
Glynisrose

Bloods mean very little, they do not measure if your meds are working, just what is floating in your blood, go by how you feel/

snugglemonkey profile image
snugglemonkey

Thank you Glynisrose

I am listening to my body and it is telling me that 75mcg of ERFA feels right. I feel that I am on the right road.

Regards,

Carl

I was just reading back through your earlier posts and see that secondary hypothyroidism (due to pituitary malfunction) is a real possibility for you - so don't be fobbed off by any diagnoses of CFS until that's been properly ruled out.

But do keep in mind that it can take a while for T4 and T3 levels to build up in your blood so maybe stop increasing now. And bear in mind that not all symptoms you have are necessarily to do with your thyroid, for example, many people find they have to go gluten free before recovery really starts to happen

snugglemonkey profile image
snugglemonkey in reply to

Hello LilyMay

Thank you for your reply. I do have a sensitivity to gluten so have been gluten-free for the past 2 years. It has made a marked difference to my gastro-intestinal health.

I feel good on 75mcg daily so I think I may stick to it, at least until I see the NHS Endo next month about my low testosterone.

All the best,

Carl

eeng profile image
eeng

I am a bit bemused by your statements that your private doctor "told me that I should be feeling a 30%-40% improvement" and that "I have felt an improvement in my symptoms of around 15-20%". These are extremely subjective and vague measures. Symptoms are experienced by different people to different extents. Your 20% might be another person's 40%. The fact that you are improving on ERFA and not experiencing hyper symptoms, and your blood tests show nothing is going over range means you are probably not overmedicated.

snugglemonkey profile image
snugglemonkey

Hello Eeng,

I have to confess to having felt a little bemused and deflated when the private doctor made what I experienced as such a blanket statement. I am continuing to experience improvement on ERFA, so am so grateful for a forum like this.

Carl

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