Results back - Help please - updated 20 April

[Jefner]

After feeling so fatigued and miserable for over a week now I decided to test again (with Blue Horizon as usual) especially when I saw that my T3 with the previous NHS test was relatively high in the range for me, which it never has been before and have always been on the same T3 dose. With Blue Horizon it's always been very low in the range (see bio).

I had a spare kit but unfortunately it was out of date so BH sent me a free one but I didn't realise it wasn't the full panel with B12 etc., so I am a bit annoyed with myself that I didnt check. Not sure whether to redo it again tbh.

Damn cortisol is still so high in the mornings and it feels like it always has been since around 2018 when the anxiety came back with a vengeance and won't go away.

What do you make of my latest results please? My GP is coming to see me tomorrow and I would appreciate feedback from you guys so I can discuss with her.

My dose is 125 Levo, 10 T3 (split dose). My T4 looks a little high and again my TSH is on the low side which I looked up and it said "A low level of TSH and high levels of T3 and/or T4 usually means you have an overactive thyroid". Although my T3 isn't high my TSH is very low and T4 on the higher side in the range", and last 3 tests show that my TSH is very low! Could indicate that I have gone hyper as I seem to have some of the symptoms, although I thought it would only be an over range T3 that would mean you are hyper?

. Don't understand either why my B12 is always so high either. I just don't know what to do anymore to feel better

** April 2023 **

Magnesium 0.90 (0.66 - 0.99 mmol/L)

Cortisol (Random) H 534.0 (6am - 10am 166 - 507 nmol/L)

TSH L 0.03 (0.27 - 4.20 mU/L New range & unit)

T4 Total 124.0 66 - 181 nmol/L

Free T4 21.8 (12.0 - 22.0 pmol/L)

Free T3 4.46 (3.1 - 6.8 pmol/L New range)

Anti-Thyroidperoxidase abs H 41 <34 IU/mL New units

Anti-Thyroglobulin Abs 52 <115 IU/mL New units

--------------------------------------------------------

**Dec 2022** - NHS blood test

T4 18.9 (11.50-20.70)

T3 5.6 (3.50-6.50)

TSH 0.04 (0.55-4.78)

B12 912 (211-911)

Folate >24 (>5.40)

Ferritin 76 (10-291)

Serum cortisol 9am 602 (145-619)

-----------------------------------------------------------

**Sept 2022 ** - Blue Horizon

CRP 0.52 <5.0 mg/L

Ferritin 101.0 (13 - 150 ug/L

Magnesium 0.91 (0.66 - 0.99 mmol/L

Cortisol (Random) 235.0 6am - 10am 166 - 507 nmol/L New range

TSH L 0.04 (0.27 - 4.20 mU/L New range & unit)

T4 Total 124.0 66 - 181 nmol/L

Free T4 18.3 (12.0 - 22.0 pmol/L)

Free T3 3.89 (3.1 - 6.8 pmol/L New range

Anti-Thyroidperoxidase abs H 48 <34 IU/mL New units

Anti-Thyroglobulin Abs 56 <115 IU/mL New units

Vitamin D (25 OH) 60 Optimal 75-200 nmol/L

Vitamin B12 H 704 (145 - 569 pmol/L)

Serum Folate 35.20 (8.83 - 60.8 nmol/L)

THURS 20TH

I AM ABSOLUTELY FUMING. MY GP WAS DUE TO VISIT ME BETWEEN MIDDAY AND 1PM TODAY (20TH). AT MIDDAY I RECEIVED A MESSAGE THAT SHE WASN'T COMING DUE TO CHANGE IN ROTA.

I EMAILED HER WEEKS AGO FOR AN APPOINTMENT AND WAS IGNORED BUT AS SOON AS MY THERAPIST TRIED TO PHONE HER, BOOM...SUDDENLY AN APPOINTMENT CAME THROUGH FOR TODAY

I HAVE MESSAGED HER BACK AND SAID I AM NOT HAPPY AND THAT I AM DOING REALLY BADLY AND NEED HER HELP.

I HAVE TO WAIT UNTIL MONDAY NOW

[GlowCoach Administrator]

Are you absolutely certain you used the same dose time spacing before the higher and lower FT3 result tests? A few hours can make a big difference.

Free T4 (fT4) 21.8 pmol/L (12 - 22) 98.0%

Free T3 (fT3) 4.46 pmol/L (3.1 - 6.8) 36.8%

Your FT4 is on the high side for someone on combination therapy and your FT3 low. You really need a bit less levo and a small amount more T3 but only change one thing at a time.

A low TSH is to be expected on anything that contains T3. Thats just how it is and nothing to be concerned about.

[Jefner in reply to GlowCoach]

absolutely certain I tested exactly in the same way yes for the December test too. I remember her coming early to take bloods around 8'ish and I remember taking a small t3 dose around 8-10hrs the night before although my T4 in December would have been taken very late morning instead of early as I had changing my sleeping patterns last year because of the building works next door.

. Am wondering if the higher FT4 is the reason why I have added anxiety symptoms like hand tremors when I reach for my meds in the morning. I have been on exactly the same dose since around 2018.

I did go over range on my T3 when I upped it by 5mcg and lowered T4 to 75mcg back in 2016 when I started trialing it.

Maybe I should start my lowering my T4 to 100mcg and retest in around 6 weeks?

[GlowCoach Administrator in reply to Jefner]

Usually when we add some T3 we reduce levo by a small amount, around 25mcgs. So of you have never done that then perhaps it is time to do so. Retest in 6-8 weeks.

Long term you will then be able to add perhaps another 5mcgs T3, which I think will help your hand tremors that are likely due to your lower level of FT3.

[Jefner in reply to GlowCoach]

I did exactly that back in 2016. If you check my results in my profile, I dropped T4 a bit and added an extra 5mcg of T3 and went over range. T3 came back in the 9's although I only left a couple of weeks before retesting on that dose because I was so obsessed and overwhelmed at that time. I have my GP coming tomorrow and not sure what to suggest to her. Also have to discuss whether to stay on my small dose hrt, increase the patch dose or come off it. That's another long painful story too going private to get help with that. Also possibly increasing my anti depressant.

Before all this shit I can say I was never sensitive to anything in the way of meds or foods, but with now having Hashi's, I was very intolerant to TEVA brand like many and then a few months ago Mercury Pharma T3 made me feel so ill, so back to Morningside. Maybe Morningside doesn't really agree with me either or maybe I need to go on NDT which many seem to find better. I just don't know anymore, I am at a total loss. Maybe none of the brands I am on suit me although surely after being on them this long the side effects would have worn off.

When I saw the last Endo Dr Wass in December, that someone on here recommended, he just said my December results were normal so I saw no point in spending good money consulting with him again. Although someone did say that he recommends Thybon Henning T3 because he says his patients tolerate it better. Maybe I should try a different T3 because I find it too stimulating even in small doses so how am I going to be increasing it

[GlowCoach Administrator in reply to Jefner]

I dropped T4 a bit and added an extra 5mcg of T3 and went over range. T3 came back in the 9's although I only left a couple of weeks before retesting on that dose

OK, so the reason it looked a little high was due to testing too early. If you leave the correct time of 6-8 weeks that should not be an issue and I think you will be fine. It takes that long for everything to settle down and see the real stable dose levels.

Good luck with the GP tomorrow.

[Jefner in reply to GlowCoach]

so ideally, what direction would be better to take? Drop T4 for a while and then retest, or just add another 5mcg now whilst still taking 125mg T4?

I hate the T3 tbh, i find it too stimulating for me even at a 5mcg dose. when I took my dose at midnight before my test the other night, an hour later I had uncomfortable palps and had to take a bit more Diazepam to sleep

[GlowCoach Administrator in reply to Jefner]

You need to drop T4 first for 6-8 weeks, then retest. After that you will really need the extra T3 and because you will leave 6-8 weeks after adjusting the dose you won't get that false high.

The palps you get are likely due to your low FT3. You need to get that to around 70% of its range. Get your FT3 up and you will sleep so much better.

[Jefner in reply to GlowCoach]

oh I have no issues in sleeping, it's just waking up which feels like hell

[GlowCoach Administrator in reply to Jefner]

Low FT3.

[Jefner in reply to GlowCoach]

am terrified of making any changes and making things worse like I usually do. Would it not be better to attend to my T3 levels first as that seems to be the issue rather than work on T4 first because that won't level up my T3. I don't think I have the strength to wait for another 6 odd weeks before I even adjust my T3.

[GlowCoach Administrator in reply to Jefner]

Ideally you would do as I have suggested above.

Up to you if you want to drop Levo 25mcgs for a week then add the 5mcgs T3.

[Jefner in reply to GlowCoach]

just terrified that I will get even more hypo by dropping T4 for several weeks and I am struggling so badly as it is

[GlowCoach Administrator in reply to Jefner]

I'm sorry you're struggling.

It's really difficult to now what to do but it's up to you.

[Jefner in reply to GlowCoach]

I know it's awful isn't it when you just can't get things right just to feel better, even just feeling a tiny bit better would make a difference to me. think I will adjust my T4 from tomorrow morning for a week or so and then add 5mcg T3. How long a gap should I leave between doses ideally? another issue I have is that I have to keep my blood sugar levels balanced cus of my adrenals/cortisol so need to nibble on some protein every couple of hours or so between meals

You have been so helpful, thank you so much xx

[GlowCoach Administrator in reply to Jefner]

I think that getting a bit better is just around the corner for you. It won't happen overnight but gradually things won't seem so bad.

For 3 doses of T3 take on waking, late afternoon and bed time.

It's not quite so important as levo leaving large spaces before or after food. They used to tell people to take it with food to slow it down.

I'm glad you have the GP coming round in the morning. Do tell her how you are feeling and I hope she is lovely and helpful.

You're welcome and stay strong.

[Jefner in reply to GlowCoach]

she isn't helpful unfortunately, she doesn't give a flying eff about me as we were to meet last year about sorting my hrt and AD out and never got back to me and when I emailed her about a home visit to discuss all again, I never heard back from her. Funnily enough when my therapist put a call in to speak to her...ping....went my phone and I got an appointment which is for tomorrow lol

Wanted to get advice off her first before I see her so I am armed with ammunition so to speak lol

[Buddy195 Administrator]

You’ve had great advice from GlowCoach but I just wanted to add an additional ‘hang in there’ support message. I have been very low in the past when my thyroid medication has not been optimal and felt extremely anxious and desperate. Things did improve BUT for some of us, it’s important to think ‘tortoise instead of hare’, as improvement is slow and over a long period of time. Sending you very best wishes Jefner. Keep posting whenever you need advice or support; we are here to help! 🦋

[Jefner in reply to Buddy195]

thank you I appreciate the support it's a very lonely road

[waveylines]

Like Buddy I want to add a message if support. I well remember how low I felt when my thyroid meds were not sorted. It took me several years to find the right type of meds and the right dose. Slowly slowly you will win in the end at finding that optimum dose and combination. Changing slowly though frustrating is really the fastest way to get it right in the long run.Hope your GP is kind to you & doesn't give you grief! Hugs Xx

[Jefner in reply to waveylines]

thank you I appreciate the support it's a very lonely road

[Fefe09]

just wanted to let you know your not alone. I stay in bed about 15 to 20 hours a day and I’m to the point where I just want to give up. I have had hypo for over 30 years and did have Graves’ disease back in 2004 when I went on a crash diet. I have never felt good and I have been on Levo my whole life. These doctors here are awful and I feel like they don’t care. I’ve been having other problems like fatty liver and stomach issue where I’m nauseous just about everyday. I have lost so much time of my life due to my illness and I’m so depressed. I pray you get the help you need . God Bless.

[Jefner in reply to Fefe09]

i pray that you feel better soon too, thank you for your kind comments

[radd]

Jefner,

FT3 level is good. You certainly don’t need any more and especially not if you are already anxious and saying you’re finding T3 difficult to tolerate. 

FT4 level is high for someone on combo meds. After a certain level (individual to us all) T4 can at best reduce its effectiveness and at worst start working against us in all manner of ways. I would drop Levo by 25mcg which could actually encourage better usage and more conversion. (This scenario happened to me and I ended up having to reduce T3 meds also!)

If you are supplementing Vit B12 you need to reduce or stop for a while as levels should match that of folate. Are you supplementing Vit D coz yours is low? Are you g/f coz thyroid antibodies are raised?

Have you got enough iron? Low iron can make any thyroid meds diffficult to tolerate. Also that high cortisol will be driving anxiety. Are you taking any adaptogens to try reducing? I love Ashwaganda, others have mentioned Holy Basil or Rhodiola. These are powerful and can be very effective in reducing anxiety and helping thyroid meds work better.

Lastly, I found T3 harsh as well. I think adrenal state dictates a large part of our tolerance of T3. Have you tried splitting the daily dose into three? The other option is NDT which I found a much smoother ride and can dose once a day and I have no anxiety now.

[Smorzando in reply to radd]

Radd,

This is somewhat confusing to me - you say the OP's FT3 level is good and she "certainly doesn't need any more" - but it's 36% of the range, which seems on the low side to me?

I had similar results to these at my last test (Ft4 90%, FT3 40%) - that's why I'm asking 🙂

[radd in reply to Smorzando]

Smorzando,

Yes, I expected some feedback 😁.

O/P has been unwell for a considerable length of time and previous labs show unstable numbers. T3 can be terribly difficult to tolerate with high cortisol and if not being utilised properly can drive cortisol still higher, ie they drive each other.  

Many on combo meds need T3 levels higher that T4. O/P is taking too much T4 which risks detrimental effects on her T3 levels by metabolising into inactive metabolites. This is a safety mechanism to stop us going hyper and the body doesn’t discriminate between either hormone, eg if its reducing T4 into RT3, it will be reducing T3 into inactive T2 also. 

thyroidpatients.ca/2019/11/...

There is also something called ubiquitination that means as T4 rises, its effectiveness in conversion to T3 reduces, eg the more T4 the less T3. Therefore, if we are T4 overmedicated, by reducing we can gain more T3 by better conversion and reducing the amount metabolised into inactive.  

thyroidpatients.ca/2018/12/...

This can be tricky to understand but basically we all have a best T4:T3 ratio that if not met can make meds not only difficult to tolerate but work against us. If meds are not working effectively, more is not always better and given the O/P's previous high numbers on exact same med doses and her anxiety levels, I think it foolhardy to increase any meds at this stage. And I think reducing Levo could encourage better T3 levels naturally.

If this were me I would reduce Levo by 25mcg, wait six weeks and retest.

[Smorzando in reply to radd]

Thank you for that very considered and helpful response! I found it very interesting - and very relevant to my own situation (again, apologies to the OP for bumping in on this post). I have found previously that reducing my T4 dose actually increased my FT3, so what you are saying about "ubiquitination" makes sense.

Since my last post I have reduced my T4 dose and am due to retest in a few days. I am finding it incredibly difficult to balance T4/T3 and find a dose that suits me. If you don't mind, may I tag you in my next post with updated results, to see if you could offer any thoughts? 🙂

[radd in reply to Smorzando]

Smorzando,

Yes, you can tag me but I strongly recommend you read more of Tania Smith blogs (I gave two links above) as they give great understanding that it is not only about the levels of thyroid hormones but how they interact with each other and other numerous factors.

Some of her blogs are sciencey but don't let that put you off, just try another one as they are all interrelated anyway.

[Jefner in reply to radd]

my FT3 level is still too low in the range and always has been on pretty much every test I have done with Blue Horizon and yet with my NHS blood panel in December which showed my T3 at the highest it's ever been and I have been on the same dose for years. So something is wrong with ONE of the labs.

As regards the T3 not helping my anxiety because of my high morning cortisol levels I agree with that. I two dose a day and I am thinking of moving my early morning dose to lunchtime to see if that makes any difference in my morning anxiety. Has to be worth a try.

I have been on the same dose of both Levo and T3 for a few years now and my labs have never been consistent, probably due to the gut issues I have and the constant anxiety.

My serum cortisol was a better better level back in my September test, not that I felt any different as regards the anxiety. I tried Holy Basil a few years ago but made no difference and Ashwaghanda is out of the question as it interacts with my AD.

I don't separately supplement with B1, I take a B complex which my former FD recommended. Even before that my B12 has always been high and I have the mthfr gene.

My D levels back in December were 188 (.49.00). Have been gluten free since 2016 which instantly decreased my very high antibodies. They are now at the lowest the last two years that they have ever been.

Are you saying you had a lot of anxiety when you were on Levo and T3 before you switched to NDT?