Results from Endo appt, Opinions appreciated pl... - Thyroid UK

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Results from Endo appt, Opinions appreciated please re T3/T4 trial.. and Happy New Year!!

jamjar67 profile image
11 Replies

I was referred to see an Endo on the NHS who is very nice and says he has not ruled me out for T3/T4 trial, My levo dose was increased from 100/75 on alternate days to 100mg per day.

I def noticed improvement to my 'head/balance' issue and the weird feeling in my arms and reduced ringing in my ears although all these symptoms have not cleared completely, also improvement to my energy level - I explained it to him like I had gone from 3rd gear into 4th gear but still don't feel like I'm in 5th gear yet.

I still feel like my cortisol is a bit off ( as I still wake at approx. 4am )

My plantar fasciitis has disappeared again

My dry mouth has got much better

My heart isn't fluctuating like it was, only the very odd time

Brain fog has improved

I have pain in my hip and shoulders ( but this might be still from games night at Xmas!!)

My Vit D has improved with high supplementation

The biggy is my T3 which I can absolutely say now has made a big difference to how I feel - but do you think trialling T4/T3 might eliminate my last lingering symptoms - is it worth me pushing for it at my next appt with these results?

I'm def still not completely right but don't know how good I should expect to be....

He did feel my thyroid and tell me I had no palpable thyroid left and that I had likely had this a long time before diagnosis ( I did reply that I knew something was wrong for a few years before diagnosis, that I felt the chemistry of my body change) Although for once I feel no satisfaction at being right!!!

My results from the hospital are as follows ( this was from Dec and I am due back in the beg of Mar)

Bloods taken as per following advice regularly given on this site.

Dec 2nd bloods taken in the hospital on Levo dose of 100mg daily

Free T3 5.3 pmol/L 3.8 - 6.8

FT4 14 pmol/L 7.5 - 21.1

TSH 0.07 miu/L 0.34 - 5.6

Vit D 136 nmol/L 60 -150

Cortisol 233 nmol/L 185 - 624 (9am blood cortisol)

The Endo has kept me on 100mg and said he would expect my symptoms to keep improving but I think this is as good as its going to get so will at this stage I feel I will always wonder if that little extra T3 might just make the difference to feeling ok to feeling 'normal'...

My previous Medichecks results for comparison

18/9/19

Levo 100/75 alternate days

TSH 0.587 (0,27 - 4.2)

FT3 3.63 (3.1 - 6.8)

FT4 17 (12-22)

RT3 15

FT3:RT3 15.76

Active B12 >300 (37.5 - 188) due to supplementing with high strength B12

Folate 12.94 (3.89 -26.8)

Vit D 56.6 (50 - 175)

Ferritin 59.9 (13 - 150)

Many Thanks

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jamjar67
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11 Replies
SeasideSusie profile image
SeasideSusieRemembering

jamjar67

Dec 2nd bloods taken in the hospital on Levo dose of 100mg daily

Free T3 5.3 pmol/L 3.8 - 6.8

FT4 14 pmol/L 7.5 - 21.1

TSH 0.07 miu/L 0.34 - 5.6

How long had you been on 100mcg daily when those tests were done?

When did you take your last dose of Levo before the test?

Your FT4 was 48% through range and your FT3 was 50% through it's range so conversion of T4 to T3 is very good and doesn't suggest the need for T3 in addition to Levo. What it does suggest is an increase in Levo to try and get both FT4 and FT3 into the upper part of their ranges.

From your Medichecks test, your Active B12 was much higher than it needs to be, have you stopped the B12 supplement? Were you also taking a B Complex to balance all the B vitamins. Folate not too bad (recommended is at least half way through range) so you could do with a good B Complex but no B12 supplement now. Ferritin is on the low side which can be helped by eating liver, liver pate, black pudding and other iron rich foods regularly.

Your Vit D is now much improved.

Can't help with cortisol I'm afraid.

jamjar67 profile image
jamjar67 in reply to SeasideSusie

I upped my dose to 100mg on the 7th Oct and my bloods were done at 9am on 2nd Dec, I took my Levo after bloods were done.

I was actually surprised how my FT3 had risen so much going off my previous results, I had been taking a lot of vit D and iron tablets, eating beef and chickens liver, but I certainly noticed a difference in myself and said to the Endo that I believed my T3 had gone up because I could feel noticeable change.

On his notes he wrote to my GP that it wouldn’t be possible to raise my dose because my TSH was 0.07 ?

It’s also odd how my T4 has come down.

I did stop with the B12 and have just been taking B6.

My Medichecks results painted a different story and I was quite amazed how such a little increase could have such drastic results, I will speak with him about a dose increase when I see him next and take the Dr Toft interview with me where he says it’s ok for TSH to be suppressed once T3 is not over range.

Thanks 🙏

greygoose profile image
greygoose

Your results are strange. Why did your FT4 go down by so much and your FT3 rise between September and December? There's a huge difference in your FT3. And, at the moment, judging by December's results, you convert extremely well, you don't need T3 at all, just another increase in levo.

I think your endo is a little over-optimistic about your symptoms continuing to improve - don't know where they get that idea. I think that your blood test in January will say you need another increase in dose. But, that's just my opinion. :)

jamjar67 profile image
jamjar67 in reply to greygoose

I have no idea why my FT4 went down and FT3 went up so much - unless it was to do with my raised Vit D and lots of iron 🤔 TBH if another dose increase will do the trick that would be so much better than having to think about more tablets... it will be interesting to see what happens at my next appt - which I’ve just received another letter saying the appt is now moved to beg March.... Also I’m not seeing the top guy anymore so I guess they feel I’m on the correct dose! ..... Let’s see what March brings... anyway good news that my body seems to be converting well... long may it continue!!! 🙏

I feel that I’m not where I need to be yet..

Thanks for your thoughts :-)

greygoose profile image
greygoose in reply to jamjar67

Optimising your iron and vit D might have improved your conversion a little, but, not to that extent. You weren't taking any biotin at the time of the blood draw, were you?

jamjar67 profile image
jamjar67 in reply to greygoose

I had been taking B6 but stopped a couple of days before..., also collagen..., dont know if that would affect?.... I’m going to make sure I stop everything for a week prior for my next test, obvs not levo - do you think biotin could have given me odd results?

greygoose profile image
greygoose in reply to jamjar67

B6 is not biotin. It wouldn't affect the results, I don't think. Nor would collagen.

Biotin can give skewed results if biotin is used in the analysis. Trouble is, we don't always know if it's used, so best to stop biotin a week before. Nor do we know which test it will affect, nor if it will be higher or lower. It's all a bit haphazard, really.

jamjar67 profile image
jamjar67 in reply to greygoose

Just checked my B6 complex and def no biotin so I don’t think I take anything with biotin in.... At the same time as this blood draw they also tested my liver, potassium etc.... but my blood was haemolyzed so the results were not reliable....I wonder if the same happened with the thyroid blood, 🤔 perhaps that skewed the results?

greygoose profile image
greygoose in reply to jamjar67

Could be. But I don't know anything about that.

SlowDragon profile image
SlowDragonAdministrator

Impressive improvement....suggest you retest via Medichecks in a further 6-8 weeks

As you have Hashimoto's....Are you on strictly gluten free diet?

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

jamjar67 profile image
jamjar67

I have been gluten free since my diagnosis in Oct 18, I did ask if I should eat some gluten and have a test but he said that wasn’t necessary as antibodies stay in your system for a long time, I did have the blood taken for the test but the test failed so I’m having it again before my next appt... he told me to remain gf as he doesn’t want to change more than one thing at a time do he knows what’s working.

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