High T3 ERFA Thyroid and Brain Fog

[Teddy-Sass]

Hello, first post. 

In October last year I commenced on ERFA Thyroid: 90mg morning and 60mg evening. 

This was via a private consultation due to unrelenting brain fog. 

Diagnosed autoimmune hypothyroidism in Nov 2017 with TSH of 300 and T4 of 4.

Picked up due to palpitations.  Main symptoms preceding this were severe health/general anxiety and notably cold hands.

Funnily enough, no brain fog, no major changes in energy and no weight gain. 

I was 35 at the time. I’m a male and had no other medical issues. Had always been active and fit. 

Placed on 150mcg levothyroxine and stable on this. 

Anyway, I’ve been feeling much better on this medication.  There was a period when I had no brain fog for two-weeks maybe a month or two in, miraculous for me.

Overall, brain fog has improved, although I still get it most days, with more brain fog-free periods now.  

A few weeks ago, when I began to get symptoms of feeling shaky, nervousness and palpitations.  I thought I may have been under the weather or picked up a virus and placed these symptoms down to this. 

However, my symptoms persisted so I checked my levels using a home test. 

My results were: 

FT3 = 9.3 pmol/L 

TSH = 0.08 mlU/L 

FT4 = 18 pmol/L 

TPOAb = 47.2 kIU/L (lowest ever been) 

T4 = 109 nmol/L 

TgAB = 56.9kU/L 

Ferritin, B12 and Vit D are all normal. 

I will ask my endocrinologist for advice but wanted to seek some opinions and advice here as there seems to be many knowledgeable experts on here with a genuinely supportive community. 

Additionally, any tangible advice on brain fog would be great. I have tried various things including very strict diet implementations, chiropractors, osteopaths, no gluten, no dairy and even carnivore which did not work for me at all personally.  

Fortunately I don't have many other symptoms other than brain fog and occasional bouts of anxiety/health anxiety.

Thank you very much.         

[SlowDragon Administrator]

What time was test done and how long before test was last dose Erfa

Can you add actual vitamin results and ranges

Vitamin D, folate, B12 and ferritin

[Teddy-Sass in reply to SlowDragon]

B12 = 95 pmol/L (37.5-150)

Ferritin = 191 ug/L (30-400)

Vit D = 134nmol/L (not sure re lower range upper range I believe is 200).

I honestly cannot remember timings. I believe you’re supposed to take test in the am with last dose the night before?

I think I did do this but not 100% ( brain fogs fault)

[SlowDragon Administrator in reply to Teddy-Sass]

Yes last dose Erfa Approx 8-12 hours before test

Are you still gluten free/dairy free

I found it took about a year gluten free for brain fog to lift

[Teddy-Sass in reply to SlowDragon]

Would you think ERFA dose would need tinkering with?

[Teddy-Sass]

No, I lasted 8 months no gluten, dairy, highly processed foods and no processed sugar.

Didn’t notice any changes in brain fog unfortunately.

I was becoming a bit obsessive over food and think it was causing me more problems stressing about it. I have a more balanced diet now.

Was hoping the EFRA would be the answer, like I said I got two weeks brain fog free which was amazing, got myself back for a few weeks.

[Anniegg62]

What was the range on your free t3?

[Teddy-Sass in reply to Anniegg62]

Hi, 3.1-6.8

[Anniegg62 in reply to Teddy-Sass]

Your free t3 is high so you could either be overmedicated or pooling. I'm trying to figure out the same thing myself right now my free t3 is high when it is normally good. I changed some other medications and it affected my thyroid meds. If you're pooling your medications aren't getting into your cells and the most common cause of that is cortisol issues. I know when I have cortisol issues I get the shaky feeling. I follow the group Stop the thyroid Madness and they recommend a zrt 4 point saliva test to check cortisol problems. On their website they show what ranges they recommend your cortisol to be at. Just being in range is not good enough there's certain parts of the range you should be in. Hopefully you are just over-medicated cuz cortisol in my opinion there's a lot trickier to treat than just thyroid.

[Teddy-Sass in reply to Anniegg62]

Hi, thanks I’ll look into this testing.

I got a cortisol blood test done a while back, had to get it done bang on 9am. Not sure what difference is between that and saliva, is saliva more accurate?

Hopefully just over-medicated like you say and it’s a more straightforward fix.

[Anniegg62 in reply to Teddy-Sass]

Yes there is a difference. Something about bound and unbound I guess what is usable. The thyroid groups say blood us useless. My blood is always good but my saliva is low.

[Teddy-Sass in reply to Anniegg62]

Great, I’ll get this done thank you

[SlowDragon Administrator in reply to Teddy-Sass]

we recommend this 5 point cortisol saliva test that importantly includes DHEA test

regeneruslabs.com/products/...

portal-app.inspira-regeneru...

Also …..testosterone levels need testing

Helpful if you can please add that you’re male on your profile and also country of residence

[Teddy-Sass in reply to SlowDragon]

Hi SlowDragon, thank you very much for your help. I’ll update my profile and order cortisol saliva and testosterone.

I’ll post an update with these and endo advice too if that’s OK as may be useful?

[SlowDragon Administrator in reply to Teddy-Sass]

Best to come back with new post when you get results

[janeroar]

Have you had your blood sugar measured recently Teddy-Sass ?

[Teddy-Sass in reply to janeroar]

Hi, I’ve had my HbA1c tested and that was OK, what’s your thoughts?

[Gingernut44]

Your FT3 is quite a bit over range. Perhaps you would feel better to drop your Erfa down by say 30mg. You might need to add in a little Levo to the mix. It’s all trial and error unfortunately and it takes time to find your sweet spot.

Why did your Endo not just adjust your Levo and add in some T3? It’s easier to adjust dosing. NDT doesn’t suit everyone (including me). I think you need to discuss all this with your Endo.

[Teddy-Sass in reply to Gingernut44]

Hi, I’m not sure I think the thought process was the NDT would do the trick.

Hoping to hear from my endo next week see what they suggest.

I like the idea of being on levo and T3 seems you can tailor the doses a bit more accurately?

I’m based in the UK. I’m no expert I get the impression there’s a reluctance for prescription of T3 in UK due to cost. I went private for NDT. Not sure what the price discrepancy is between T3 and NDT here ?

[SlowDragon Administrator in reply to Teddy-Sass]

T3 is a LOT cheaper than NDT

Typically daily dose is between 10-20mcg per day. Often as 5mcg doses split across the day

20mcg Thybon Henning T3 costs 50-60p per tablet on private prescription

So cost is approximately £7-£14 per 28 days

Virtually impossible to get NDT on NHS

360 prescriptions in England in last year

openprescribing.net/analyse...

Number of patients getting T3 prescribed is increasing again as price is dropping

Currently around 61,500 prescriptions in England in last year. Typically 6 prescriptions per person per year

openprescribing.net/analyse...

NHS currently paying £55 Approx for 28 tablets of 20mcg T3

[Teddy-Sass in reply to SlowDragon]

That’s really helpful to know and interesting.

Wonder if my private endo has another side income with a NDT sourcing percentage ha?!

I pay much more for my NDT!

[FancyPants54 in reply to Teddy-Sass]

I get my NDT on a private prescription from Roseway Labs in UK. It's not too bad, but a lot more than T3. However T3 seems to be too immediate for me whereas the T3 in NDT is more like a slow release product because it's bound and breaks down more slowly. I much prefer the effect of the T3 in NDT, not that I have my dose correct yet. I suspect I may need to drop it further and add in a little Levothyroxine to even up the T4/T3 ratio a bit, more in line with human ratio rather than the slightly more T3 heavy pig ratio in NDT.

You should get your sex hormones checked. Brain fog is a regular horror for women, all based on our sex hormones and it can go loopy at menopause. A lot of us find that we need to add in some testosterone as well as oestrogen to feel well and men need oestrogen as well, only in lower amounts. Not something that gets talked about much. Women produce testosterone and men produce oestrogen. We just need the correct balance.

A poster above mentioned STTM site and "pooling". Pooling has been debunked. It doesn't work like that. A lot of that site is pretty out of date now. There's better advice here and in the thyroid medical blog Thyroid Patients Canada. That web site is a mine of extremely valuable scientific information about our condition.

Your FT3 looks a bit high to me. But it does depend on time. For those of us on NDT, there is a view that because the T3 element is a slower release, we should test 24hours after last dose so that we get accurate FT4 readings and can see what our T3 is at it's lowest point. If you don't want to do that, then 12hours minimum before test I would suggest. Your FT4 will be a false high in the test result.

healthunlocked.com/thyroidu...

[Teddy-Sass in reply to FancyPants54]

This is very helpful thank you very much.

[Gingernut44]

To be honest, I don’t think there’s a lot in it regarding cost. You’ll get Levo free on NHS and, depending which T3 you’re well on, you might find it cheaper. Is your Endo private or NHS?

[Teddy-Sass]

Yes private, I was initially under NHS endo consultant and think I met criteria for T3 and levo prescription then, but didn’t have the info/knowledge to push for it.

Not much my GP can do I suppose.

Out of desperation I went private.

[SlowDragon Administrator in reply to Teddy-Sass]

T3 can’t be initiated by GP, has to be prescribed via NHS endocrinologist and via hospital pharmacy for first 3-6 month trial

Then, assuming trial goes well, endocrinologist writes to GP requesting they take over ongoing cost of prescription with annual review back with endocrinologist

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3

Majority are private

Some are private and NHS

[e-mail]

[Teddy-Sass in reply to SlowDragon]

Brilliant, thanks very much