Advice before Endo appointment

[Sorchameadhbh]

Hi Everyone

I would greatly appreciate some advice before a first meeting with a private endo (known to prescribe t3) next week. I am clearly a very poor converter, despite getting the fab 4(ferriten, Vid D, folate, B12) into optimal ranges..(see below) In August this year my GP saw my suppressed tsh (which never bothered me) and reduced my levo from 112.5 to 100mcg. blood results showed little had changed apart from t3 reducing even further. Now GP wants to reduce levo to 75mcg which I politely refused, stating I would see an Endo. GP said they would follow advice from Endo. To my surprise, they tested t3 without my asking!

August 2022: 100mcg levo

Free t4: 21.3 (11.1 - 22.0)

Free t3: 3.7 (3.1 - 6.8)

TSH: 0.06 (0.27 - 4.2)

November 2021: 112.5 mcg levo

Free t4 21.9

Free t3 4.0

TSH: .09

I had been supplementing selenium which hasn't made any difference it seems.

Vitamin testing (Thriva) from April 2022;

B12 active 150 (37.5-150)

Ferritin 118ug (44 - 150)

Folate 39.9 (30-45)

Vit D 127

My question is will the Endo refuse to prescribe t3 as tsh will fall again if I understand this process correctly? I don't want to waste my money.. My main symptom is brain fog, some anxiety, also very dry eyes, dry itchy skin, tinnitis, slightly raised cholesterol despite good diet and being generally quite fit. all of which I manage and put up with, but I want my cognitive function back!

Any advice/thoughts greatly received.

[Buddy195 Administrator]

Adding Liothyronine will suppress your TSH, but this should not be of concern to an endocrinologist who is familiar with prescribing combined treatment to patients. You certainly are a poor converter, so hopefully the adding T3 will alleviate many adverse symptoms.

How much selenium are you taking? Unless you have concerns about Thyroid Eye Disease, a supplement of 100ug daily is sufficient (as exceeding 400ug daily can be toxic). For dry eyes, use preservative free drops (liberally!) such as HycoSan or Hyloforte. Taking a daily magnesium supplement has also helped reduce my anxiety levels, so this may be something to consider.

[Sorchameadhbh in reply to Buddy195]

I took 200ug selenium for 6 months but stopped 2 weeks ago, thought I needed a break from it. I use hyloforte but I only take 100 mg magnesium so I could definately increase there...thank you so much for the response!

[GlowCoach Administrator]

Just to reassure you, I saw a recommended Endo the other day. He didn't even require the genetic test as he said anyone who comes to him for T3 always tests positive so no point in testing.

He had my most recent test results which I had sent him, whilst not the worst could definitely be improved upon. He had no issues with prescribing T3 for me.

If this doctor has been recommended then I wouldn't fret too much. I do understand the concern as I've seen NHS Endo's myself and it's like talking to a brick wall, but they aren't all like that. Really.

[Sorchameadhbh in reply to GlowCoach]

Thanks very much for the reassurance, I appreciate it!

[McPammy]

I was on levothyroxine only and suffered for many years. The NHS unfortunately was useless. After joining this forum I went to see a private only endocrinologist who virtually immediately prescribed me T3 combined with levothyroxine. My T4 was at the top of the range. He didn’t change my dose. We added 5mcg T3 twice a day. Oh boy what a huge difference that has made to my life. I’m still on the same doses of T3 but I reduced my levothyroxine very slightly by 10%. My TSH is not suppressed and only has been twice in the very early stages of starting T3 until I reduced levothyroxine by 10%. Not all will have a suppressed TSH. My T4 and T3 results are usually mid way in the ranges now. My TSH last time was 0.90(0.35-5.50). But most of all I feel absolutely great. If my TSH goes suppressed I feel dizzy, confused, hungry, wake too early, generally not good. If my TSH and levels are not suppressed and within range I feel fabulous, youthful and positive. I am a very poor converter and have had a positive result from the DIO2 gene test. I can’t thank my private only endocrinologist enough for helping me when every Dr I saw within the NHS either ignored or couldn’t help me for years. Going private was the best thing I did.

[Sorchameadhbh in reply to McPammy]

What a positive story, thank you McPammy! I'm starting to feel hope now...I haven't done the DIO2 test but I'm sure I would be positive, with my t4 top of the range etc....the support on this forum is wonderful! Really helpful to hear your and others journey to health .Thank you.

[SlowDragon Administrator]

as you have Hashimoto’s

Are you on strictly gluten free diet and/or dairy free diet …..or tried these

Which brand of levothyroxine are you currently taking

[Sorchameadhbh in reply to SlowDragon]

levo is Mercury Pharma and whilst my diet is very low gluten it is not strictly gluten free. As I love cheese and don’t have digestive issues it’s hard to motivate myself to go gluten/dairy free… would doing so aid t4/t3 conversion ?

[SlowDragon Administrator in reply to Sorchameadhbh]

perhaps initially try splitting dose levothyroxine….half waking and half at bedtime

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

Or if normally splitting your levothyroxine, take whole daily dose 24 hours before test 

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Splitting dose levothyroxine and/or gluten free diet significantly improved conversion for this member

See my reply right at bottom of thread 

healthunlocked.com/thyroidu...

See Tattbogle’s reply in this post re splitting levothyroxine dose 

healthunlocked.com/thyroidu...

[Sorchameadhbh in reply to SlowDragon]

I didn’t realise splitting dose or going gluten free could make such a significant difference to conversion… thanks for this info SLowdragon… I’ll cancel the endo , save my pennies for now! And split levo tonight.. then I’ll be ready in a week to go strictly gluten free and we’ll see in 8 weeks time!

[SlowDragon Administrator in reply to Sorchameadhbh]

or you could do 8 weeks splitting dose levothyroxine first …..then test

Then trial strictly gluten free diet after that

[Sorchameadhbh in reply to SlowDragon]

I guess there’s no quick fix, not with Hashi’s ! Thank you

[SlowDragon Administrator in reply to Sorchameadhbh]

generally the best way forward is …..one change at a time and then wait 6-8 weeks minimum to assess

[Sorchameadhbh in reply to SlowDragon]

Yes, will do.