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Thyroid UK

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HelenR23 profile image
29 Replies

Results

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HelenR23 profile image
HelenR23
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29 Replies
SlowDragon profile image
SlowDragonAdministrator

I removed the image as it showed you name and DOB

Was also out of focus

Can you hide personal details and reattach image

HelenR23 profile image
HelenR23 in reply toSlowDragon

is this better

Results of test
helvella profile image
helvellaAdministrator in reply toHelenR23

It is very difficult to read.

Can you take the picture again - but closer up? If the printed area filled the frame it would be fine.

HelenR23 profile image
HelenR23 in reply tohelvella

My phone camera is rubbish but if the picture is enlarged it can be viewed. I will try again.

HelenR23 profile image
HelenR23 in reply tohelvella

Any better

Any better
pennyannie profile image
pennyannie in reply toHelenR23

Yes - thank you :

pennyannie profile image
pennyannie in reply topennyannie

OK - so have you worked out your T3/T4 conversion ratio as detailed previously and what is your result ?

I'm getting your result at 5 so outside the suggested ratio of 1 / 3.50 - 4.50 - T3/T4 as we tend to feel at our best when we come in this little ratio at around 4 or under.

Your T4 is over range at around 124% whilst your T3 is at just under 50% and we generally need both these vital hormones up in the top quadrant on the ranges to hormonal balance and ones health and well being restored.

Since you have not a thyroid the logical solution is to drop a little T4 and add in a little T3 - Liothyronine - to manually rebalance your thyroid hormones as you have lost your own T3 thyroid production, and though just guess estimated at around 10 mcg - T3 is said to be around 4 times more powerful than T4.

You will need to referral to an endocrinologist as currently your NHS doctor can only prescribe T4 and anti depressants, and possibly other add ones rather than being able to deal with the most immediate concern - one of poor T4 thyroid conversion.

Ferritin looks high - were you supplementing - if so, stop and might be worth checking out with a full iron panel to ensure nothing else ' looks ' out of range.

I have found I feel at my best with a ferritin of around 100: folate at around 20 : B12 75 ++ ( serum B12 500++ ) and vitamin D at around 100.

So it's not that T4 isn't working for you and you would do better on liquid T4 - it's simply the need to replace both vital hormons that were lost when you lost your own thyroid hormone production.

HelenR23 profile image
HelenR23 in reply topennyannie

Ok thankyou. Previous tests show I can't convert properly. I've contacted a private consultant on the mainland who is going to look at my results. My iron panel was all ok except ferritin. I am not on B vits as yet but I did have oral spray of B12 but ionly had it twice and not before my tests. Not sure why ferratin is high but Slow Dragon said it could be age as I've gone through menopause. I just wish this constant anxiety would ease, it's really so bad. Maybe it will ease when I get thyroid levels sorted.

pennyannie profile image
pennyannie in reply toHelenR23

I was in a similar state of anxiousness and when I dropped some T4 and added someT3 - it felt like my brain and cognitive functions had been repaired and I was able to function again - literally ' that light bulb moment ' one reads about - where are you ?

HelenR23 profile image
HelenR23 in reply topennyannie

That's encouraging. I live on the Isle of Wight. Our health care is so limited with only 1 hospital and 1 endo, takes a year to see anyone.

If my anxiety gets relieved a bit I could start to live again. I have to pay the consultant on the mainland and it's done via email and phone but I will hit the credit card again!

Fingers crossed. Thankyou.

pennyannie profile image
pennyannie in reply toHelenR23

I'm in Cornwall - just 1 hospital constantly on red alert - but anyway I was refused both T3 and NDT as my situation became intolerable around 8 years ago so way before the situation we now appear to be facing.

Ok - so this a private consultation- yes - it's all so wrong but here we are :

Did you choose him from the recommended list held at Thyroid UK at head office ?

If you email admin at thyroiduk.org you can have a copy of that held sent to you.

Either way, please leave feedback to help other people looking for help out there as it can be a mine field.

Fingers crossed - keep us in the loop :

HelenR23 profile image
HelenR23 in reply topennyannie

No I found him as I did a Google search. He is Mr James Kirkby-Bott and based at the Spire hospital in Southampton just across the water. He has a good reputation and deals with thyroid surgery and all thyroid matters so I have confidence in him. He is blooming expensive like they all are. The only endo on the Isle of Wight has bad reviews so I didn't want to get referred to him. I'm sorry you've had a battle with NDT and T3. It's so unfair we have to fight to feel better!

pennyannie profile image
pennyannie in reply toHelenR23

You could start a new post asking for feedback on this man ?

Someone may have seen him and can advise how it went for them ?

We are not allowed to openly discuss any person but of you ask for PMs - Private Messages - you may learn whether he is a waste of time or not ?

PM's appear under the ' chat ' icon above - looks like a paper airplane !!

HelenR23 profile image
HelenR23 in reply topennyannie

Ok I will do. Thankyou.

helvella profile image
helvellaAdministrator in reply toHelenR23

Much better! Shame it has rotated but the characters are properly legible. :-)

SlowDragon profile image
SlowDragonAdministrator in reply toHelenR23

Ft4 is over range

FT3: 4.9 pmol/l (Range 3.1 - 6.8)

Ft3 is only 48.65%

Was test done early morning and last dose levothyroxine 24 hours before test

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Vitamin levels

Folate is low

Are you now taking daily vitamin B complex

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

Ferritin

presumably you are post menopause

Higher ferritin levels are quite normal after periods cease

You might ask GP to do full iron panel test for anaemia including ferritin to check if iron levels are ok.. it’s possible to have low iron despite higher ferritin.

But ferritin is only just over range …so likely insignificant

HelenR23 profile image
HelenR23 in reply toSlowDragon

yes I tested at 6am prior to levo which is 100mg. I hadn't taken any vitamins a week prior and haven't started on b compound. I've always taken accord levo. My doctor did a full iron test which was all ok. I have been through menopause a few years ago and no periods for 9 years now. My cholesterol was 6.6 in may but now is 5.1 so slowly reducing through diet. I'm relieved about the ferritin levels if you think it's common after menopause. My Vit D was well within range so was magnesium. B12 on GP test was 279 Ng/L range 180 to 90.0 and folate was 8.5 ug/L range is 4.0 to 20.00 . Hope this makes sense.

SlowDragon profile image
SlowDragonAdministrator in reply toHelenR23

so B12 and folate were low

Both should improve on vitamin B complex …..plus separate B12 as well initially for first few months

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

High cholesterol is frequently linked to low Ft3 levels and as vitamin levels improve and conversion of Ft4 to Ft3 improves….likely to see Ft3 levels increase …cholesterol should reduce further

Gluten free diet likely to help improve how you feel too

HelenR23 profile image
HelenR23 in reply toSlowDragon

Thankyou, it might help my anxiety to have everything sorted. My Vit B complex is due in post and I will continue with Vit C and Methylated B12. I'm sending my thyroid results to a consultant on the mainland as I spoke to him before and he may see if I can get T3 via my NHS doctor so I can convert properly. I appreciate everyone's help on this. I'm sorry to have badgered you all with messages but I needed a reason as to why I have such a high anxiety level. It's crippling me. Hope I can calm down soon once I'm sorted.

SlowDragon profile image
SlowDragonAdministrator in reply toHelenR23

Did you mean …vitamin D (not vitamin C)

Vitamin C tends to increase iron absorption

Personally I would wait …..get all vitamins optimal and at least 2-3 months minimum on strictly gluten free diet

Then retest thyroid and vitamin levels

Approx how much do you weigh in kilo?

Personally I would improve vitamin levels and go gluten free first ….before considering changing dose levothyroxine

If Ft4 remains over range at next test ….You might possibly need small dose reduction in levothyroxine. Over range Ft4 can make some people anxious.

Eg reducing to 75mcg twice week and 100mcg 5 days

Which brand of levothyroxine are you taking

HelenR23 profile image
HelenR23 in reply toSlowDragon

I weigh 68 kilos. I'm on 100mcg of Accord Levo. I started gluten free two weeks ago. I do take Vit C and Vit D3 and will start VitB complex. I lost 2 stone in weight since anxiety so maybe I should try reducing levo to 75 but that means mixing my brands. I am seeing my normal GP in over a week so I will be armed ready with my results. Will look what brands do 50 and 25mcg levo. My new Levo prescription which starts tomorrow is Mercury Pharma. I haven't taken that one before. Normally it's Accord so a bit apprehensive. My surgery are cutting down and buying cheaper brands. I will keep you updated in a month or so and redo my tests again. Thankyou so much.

Jaydee1507 profile image
Jaydee1507Administrator in reply toHelenR23

Glad to see you're getting some help and in contct with an Endo. I wouldn't be dropping your Levo at this point, wait until you have some T3. Don't want your FT3 dropping any further!

Hope you get what you need.

HelenR23 profile image
HelenR23 in reply toJaydee1507

Thankyou. I am emailing all results to the mainland consultant. I've been hyper anxious now continuosly for 4mnths with no explanation as to why even though I'm on anti depressants just hoping this will help alleviate it.

Jaydee1507 profile image
Jaydee1507Administrator in reply toHelenR23

Is the consultant from the Thyroid UK list? If so you should be fine. I'm sure adding some T3 will help no end.

SlowDragon profile image
SlowDragonAdministrator in reply toHelenR23

so at 68 kilo you are probably on correct dose for your weight

Suggest you stop vitamin C as that might be contributing to increase in ferritin levels

Definitely don’t mix brands of levothyroxine if can avoid it

But…….See how you get on with Mercury Pharma.

Accord is also boxed as Almus via Boots or Northstar via Lloyds.

Accord only make 50mcg and 100mcg tablets

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Both Accord and Mercury Pharma are generally well tolerated

Mercury Pharma also boxed as Eltroxin - both often listed as Advanz the company name in pharmacy directory

Don’t consider reducing dose levothyroxine at moment

HelenR23 profile image
HelenR23 in reply toSlowDragon

Ok I won't reduce just yet. I shall stop Vitamin C but continue with other bits. Now Gluten free so hope that will help. Will email all my results to private endo. I'm hoping I am ok on mercury Pharma and good to know they do 25mcg.

Honestly you have all been amazing. I'm crying with relief but it's a good thing.

SlowDragon profile image
SlowDragonAdministrator in reply toHelenR23

Gluten free diet

Read all ingredients labels carefully - especially sauces and chutney etc.

Watch for cross contamination

Use separate butter, jam, cutting board etc

Gluten free bread - use separate gluten free toaster

Gluten free foods in separate freezer draw etc etc

TiggerMe profile image
TiggerMeAmbassador in reply toHelenR23

Hi Helen, I tend to get anxiety if my estrogen levels drop, have you checked where your levels are post menopause?

Very similar symptoms low sex hormones and low thyroxine 🙄

SlowDragon profile image
SlowDragonAdministrator

As you recently did home test for coeliac and it was positive….likely to see improvement on strictly gluten free diet

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