New Hospital appointment on Wednesday. - Thyroid UK

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New Hospital appointment on Wednesday.

Otto11 profile image
40 Replies

Hi I have posted on here several times in the past year & have had marvellous help & information from you all. I cant remember when I last posted & still having problems finding my previous posts so apologise if I'm repeating myself. I was discharged from Endocrinology a year ago after 2 increases in Thyroxine when things were still not satisfactory in my opinion. I asked my GP in July if I should write to the Endocrinologist & she said it wouldn't hurt but not to mention she said so. I wrote but had no response then a secretary rang to tell me he had retired at the end of last year & I would now need to be re-referred. My GP did a TSH test in August which has now gone down to 0.18 (0.27-4.2) she then rang to tell me it was now too low & to reduce my Thyroxine to 100mcgs one day & 125mcgs the next. She also said she would re-refer me to Endocrinology. That was unexpected. My appointment has arrived for Wednesday this week so very little time to prepare. My problem is my hubby sat down with the conversion calculator this afternoon & is telling me all my results are perfect!! He dosn't understand anything about thyroids & wont listen to what I have learnt telling me I will make a fool of myself. Im not sure I now want him to go with me to my appointment. He is telling me that my levels are within range so all is ok!!! He is not understanding the conversion percentages through range.

These are my latest results done privately ( since my GP did my TSH only in August) in September

TSH 0.14 (0.27-4.2)

T3 4.13 ( 3.1-6.8)

T4 22.2 (11.22)

I work this out that my T3 is only 27.84% through range. Hubby is telling me that as my T3 is 4.13 then it is above the cut off of 3.1 so is good. He is really annoying me. & I know he will contradict me in my appointment. Should I leave him behind or am I wrong? Help please.

My previous test results done at the hospital were last November which were

TSH 0.57 (0.27-4.2)

T3 3.7 (3.1-6.8)

T4 22 (11-22)

Thanks in advance

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Otto11 profile image
Otto11
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40 Replies
greygoose profile image
greygoose

Leave him at home! He talks like a doctor. lol No conception of conversion and all that, no idea what ranges are all about. Try to explain to him that the ranges are far too wide to be good all the way through, and that a result of 3.2 for FT3 will not make you feel the same as a result of 6.7, even though they are both in-range. What's more, you cannot take one result and look at it in isolation - although that's exactly what doctors do - you have to look at them in conjunction to each other. Doubtless someone - can't remember who - will come along with her shoe-size analogie. And, if all else fails, give him this article to read (you could try giving it to your doctor, too):

The normal range: it is not normal and it is not a range

ncbi.nlm.nih.gov/pmc/articl...

It's bad enough having to deal with doctors, without having husbands weighing in on their side! (And I speak from experience, here!)

But seriously, your FT3 is much too low, and you are a poor converter.

Otto11 profile image
Otto11 in reply to greygoose

Thanks for your help. I have tried to read the info on the link but my brain wont take it in! Will try again before my appointment. Still in 2 minds re hubby 🤷‍♀️

greygoose profile image
greygoose in reply to Otto11

Did you give hubby the article to read? It's him that needs convincing. :)

DippyDame profile image
DippyDame

Your FT3 is too low!

Your husband doesn't understand how thyroid labs are analysed! If he persists in voicing his opinion re your results he won't be helping you I'm afraid....your results are not good as he insist!!

We aim to have both Frees roughly approaching 75% through their respective ranges.

Being anywhere within the ref range is not good enough! Our result must be at a point within the range where we feel well We are all different so this will vary....but at 27.84% you can expect to feel under par.

Your T4 to T3 conversion is poor so action is needed.

First you need to optimise vitD, vit B12, folate and ferritin to support conversion.

Based on those labs the endo should recognise your low FT3 and offer a trial of T3 on the basis of poor conversion.

Good luck

Otto11 profile image
Otto11 in reply to DippyDame

Thanks. this has gone on way too long. Keeping my fingers crossed this new Endo listens x

Fruitandnutcase profile image
Fruitandnutcase

Good heavens like the others say - I would definitely NOT take him in to see the doctor with you.

It reminds me of when my new washing machine broke down. I was told by the manufacturer that I could have it replaced by JL. The smiley manager was not so smiley when he realised I wasn’t a ‘sale’ after all - he even phoned up to check that I was telling the truth! Cheek of him! Then he tried to give me a machine that cost less than I had paid for the one I had.

OK his choice did the same things and I could see what h was getting at but it wasn’t what I wanted because that point it cost a couple of hundred pounds less.

I stuck to my guns in spite of my husband agreeing with the man and trying to explain it all to me, like I was dim not to realise what the man was telling me!

My mantra was ‘I paid £600 - the machine you want me to take in exchange costs £450 - I want a machine that costs £600. The guy even offered to get me the same machine - like I said to him why would I want one that has an inbuilt problem? In the end he said ‘well choose the one you want’ and walked off! That was what I did but boy could I have done without my husband agreeing with the salesman.

So, you at least know what your husband is going to be like before you get there so don’t let him near the consultant, believe me the outcome would not be good. The very best of luck to you. Great that your appointment has come round so quickly.

Otto11 profile image
Otto11 in reply to Fruitandnutcase

Thanks & well done for getting the better deal as you should. I have spent so long reading up things im exhausted with it but really don't want him messing things up. I actually rang to see where I was on the waiting list so I knew what to expect & after going off for a few minutes she said could I come on Wednesday! I am rather shocked tbh but wasnt about to say no.

Fruitandnutcase profile image
Fruitandnutcase in reply to Otto11

Gosh, in this day and age that must have been a shock but a good one. I hope your appointment goes well. I think it’s a good idea to leave your other half outside.

My first ever endo visit I came out and said that I had a feeling that had I taken my husband in with me I imagine he would have ignored me and spoken to my husband instead. You know when you get that feeling?

So good luck tomorrow

Otto11 profile image
Otto11 in reply to Fruitandnutcase

Thanks. Yes i've had this before with older generation consultants. I think this is a new Dr so I may know more than him!! I'm not holding out too much hope but 🤞

Lalatoot profile image
Lalatoot

I don't know what size your husband is but go and buy him a jumper or a pair of trousers of normal size but too small for him. When he can't get into them tell him they should be a perfect fit because they are within the normal range of sizes. Think men's trousers start at 32 inch waist these days so they should be just right for him

greygoose I've ditched the shoes and now cite a clothes rack of normal sizes where every size should fit you.

greygoose profile image
greygoose in reply to Lalatoot

Any particular reason for that? I like the shoe one. lol Main trouble with clothes' sizes is that they are inconsistant, and a size 12 from one manufacturer would be a size 14 from another. Shoes tend to be much the same wherever you buy them.

Lalatoot profile image
Lalatoot in reply to greygoose

Thought folks might be getting bored of me and my shoes. Back to shoes it is!

greygoose profile image
greygoose in reply to Lalatoot

🤣🤣🤣

Milkyway88 profile image
Milkyway88 in reply to Lalatoot

I might use this at my GP. What is the shoe analogy then?

Lalatoot profile image
Lalatoot in reply to Milkyway88

Similar to clothes. Imagine a row of normal sized shoes. Ladies 3 to 8. Let's call that the normal range for shoes. The GP would hand you a pair of size 4s and say there you are that's a normal pair you'll be fine with them. But they'd really hurt your feet and you'd hobble because you really take a normal size 7. It's the same for thyroid ranges. The GP would say normal and fine for an ft4 of 12 range 10 to 22 but in reality you feel rubbish because your ft4 should be 18 to be optimal for you.

Otto11 profile image
Otto11 in reply to Lalatoot

Ha Ha 😀 Love it. You are so right though. What a good way of explaining it. Thank you.

SlowDragon profile image
SlowDragonAdministrator

Was latest test done early morning, ideally before 9am, only drinking water between waking and test

Do you always get same brand levothyroxine at each prescription

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you taking

FT4: 22.2 pmol/l (Range 12 - 22)

Ft4 102.00% through range

FT3: 4.13 pmol/l (Range 3.1 - 6.8)

Ft3 only 27.84% through range

Most people when adequately treated will have Ft3 at least 60% through range

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we need GOOD vitamin levels

Otto11 profile image
Otto11 in reply to SlowDragon

Thanks. Yes bloods done according to protocols. Last vitamins bloods were in May. Folate 13.1 ( >3.9). Ferittin 96 (30-260). Vit D 94 (>51). B12 579 ( just prior to injection). Currently get same brands.

SlowDragon profile image
SlowDragonAdministrator in reply to Otto11

What’s the top of the range on folate….20 or 60

Do you know if you have high TPO or high TG antibodies?

Are you on gluten free or dairy free diet

Do you take levothyroxine on empty stomach, then only water for at least an hour after and no other medications or supplements within 2 hours

Otto11 profile image
Otto11 in reply to SlowDragon

Hi thanks for your help. Im not sure on the folate level my notes say above 3.9 I will check it out. My TG antibodies were 131 (0-115) last year. TPO negative if I remember correctly. I take my Thyroxine at night. The endo I saw last year advised it. I'm not gluten or dairy free.

SlowDragon profile image
SlowDragonAdministrator in reply to Otto11

so high TG antibodies confirms cause is autoimmune

Always worth trying gluten free first

Then in few months trying dairy free

Otto11 profile image
Otto11 in reply to SlowDragon

Thanks. I asked the previous consultant if it was Hashimoto's & he said no. I have lots of other Auto immune conditions so guess par for the course. I love bread so much but I will try to cut back for sure. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Otto11

U.K. medics rarely refer to autoimmune thyroid disease as Hashimoto’s

Technically Hashimoto’s is only if you have a goitre

Autoimmune disease without goitre is Ord’s thyroiditis

No point cutting back on gluten……it needs to be strictly gluten free to be effective

Otto11 profile image
Otto11 in reply to SlowDragon

Thanks. Its all so complicated.

pennyannie profile image
pennyannie

If you press the icon top right facing you on this page saying - More -

then press Update Profile

and go to Your Profile Page

you should then find your previous questions and the answers received under your posts.

Hope that helps - and agree - your T3 is in the range but not at a high enough level to restore your health and well being.

We generally feel best when on T4 only when the T4 is in the top quadrant of its range -

the accepted conversion ratio of T4 into T3 is said to be 1 / 3.50 - 4.50 - T3/T4 -

and we generally feel best when we come in this ratio at 4 or under -

so if I divide your T4 by your T3 I'm getting your conversion coming in at around 5 37 -

so very wide of the centre and showing very poor conversion of the T4 - Levothyroxine.

Conversion can be compromised by non optimal levels of core strength vitamins and minerals, any physiological stress ( emotional or physical ) inflammation, antibodies, depression, dieting and ageing.

The logical solution is to reduce down your T4 dose and add in a little T3 - Lithyronine -thereby rebalancing your T3/T4 thyroidal hormones - increasing T3 and reducing T4.

T3 is not routinely prescribed and it is a post code lottery and NHS financial restraints tend to trump some peoples medical need.

Good luck with or without your husbandin tow,

P.S. I've just come back on and notice the format of this page has changed - so now to find your old posts and all your replies you need to go into Profile - top right of this screen and this takes you directly to where you find everything you have written previously.

Otto11 profile image
Otto11 in reply to pennyannie

Bless you I will try this. I'm never sure whether to start a new question or to add it somehow to previous questions. I really must try to do my profile as it will make things easier. Can I ask a question ? Would it be better to measure percentages through range or conversion rates? Should I mention them at all in the appointment? Thank you so much for your help .

pennyannie profile image
pennyannie in reply to Otto11

Well - why not do both :

Using the ratio - your conversion of T4 into T3 is coming in at 5.37 and very wide of the centre.

In percentage terms yourT4 is just over range at 102% with a T3 at just at 27.8% :

Generally speaking we need a T4 up in/towards the top quadrant of the range at around

80% with a T3 tracking behind the T4 by some 10/15% at around 65% :

Reducing your T4 will likely negatively impact your T3 reading :

I tried explaining both the conversion ratio and the percentages to my NHS endo back in 2018 but I didn't succceed in getting any help and I'm afraid in my area of the country hospital financial restrictions were deemed more important than patient health and well being.

I now self medicate and am much improved.

Now - here's another ' trick ' - if you press on the icon alongside my name - or anybody's name - you will be taken to their Profile page - where you can read all they have ever posted and replied to on this forum.

Otto11 profile image
Otto11 in reply to pennyannie

Thank you so much for your time & explaining things. I am understanding things a lot more. I didnt give it a thought when my GP asked me to reduce my T4 that it would impact on my T3 but of course it will. That said I cant increase my T4 as already too low. I think i've got it at last. You're a star.

pennyannie profile image
pennyannie in reply to Otto11

Try not to get too stressed by it all -

Irrespective of what you say or do - if the endo knows their stuff and is able to function unhindered by hospital financial constrants you will get the help and support you need.

Keep us in the loop -

Otto11 profile image
Otto11 in reply to pennyannie

Will do x

pennyannie profile image
pennyannie in reply to Otto11

Always start a new question as then it gets full coverage by all forum members reading the forum.

Adding to an ' old ' post - even just 24 hours later - maybe missed unless you actually reply to a named person and make sure their name comes up when you reply as then they get notified they have a messag waiting.

Otto11 profile image
Otto11 in reply to pennyannie

Thanks again I did wonder about that. I just didn't want you wonderful experts having to repeat things on my behalf. You must spend hours looking after others. God bless you x

Otto11 profile image
Otto11 in reply to pennyannie

Just tried it. Yay! It works! I've no idea why that hasn't happened in the past 🤷‍♀️ Great though ( it will save me a lot of paper! )

pennyannie profile image
pennyannie in reply to Otto11

I've just been reading your back story and understand you had a partial thyroidectomy some years ago:

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more potent / powerful than T4 :

So it seems logical to me, since you haven't the fully function of your thyroid -

and struggling with only half the gland -

you will have lost some percentage of both T3 and T4 production and having been running on half a thyroid for such a long time will have lefyou t totally exhausted.

Some people can get by on T4 only.

Some people find that after some time T4 seems to not work as well as it once did and find their health improved by adding back in a little T3 - to replace that little bit lost when they lost their thyroid.

Some people can't toleate T4 and need to take T3 only - Liothyronine.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the human gland and derived from pig thyroids, dried and ground down into tablets and referred to as grains.

NDT was the orinal successful treatment for hypothyroidism for over 100 years before Big Pharma launched their T3 and T4 synthethic options in the middle of the last century and then went about gaining market share by fair means or foul.

Up until around 2000 - all these treatment options were availablr from your doctor, if T4 didn't totally restore your health - now sadly, your doctor only has T4 and anti depressants - and you need a referral to be assessed if you need more than T4 monotherapy.

Otto11 profile image
Otto11 in reply to pennyannie

Thanks a lot. There's still a lot more for me to learn. It may be that the hospital still refuse me on cost alone. I will print this out so I can read it properly to understand it fully. I have Epilepsy which affects my memory terribly & consequently have notes everywhere. Thanks again for all your time, its so much appreciated.

pennyannie profile image
pennyannie in reply to Otto11

Maybe let ' Hubby ' read it as he is the second string to your bow with this forum being the first - and just see if it makes sense to him and then ready for round 2 at the next registrar appointment. ?

Brightness14 profile image
Brightness14

I am on my third husband and this time it's perfect, he's always helpful but doesn't interfere. Good luck with your appointment. Your FT3 looks much to low to feel well.

Otto11 profile image
Otto11 in reply to Brightness14

Thank you 3rd time lucky!!

Ebx_design profile image
Ebx_design

Oh my gosh. We all want support when we can get it - that is understandable. But in this case, your body, your choice. Leave him home? Focus on sharing details on your symptoms with your endo, - write a list beforehand and take it in with you. Plus your labs aren't great, high T4 (do you have the jitters??) and low T3. Far from ideal.

All the best for your appointment.

Otto11 profile image
Otto11

Thanks. I have had periods of the jitters & been several times to the GP who had no ideas really. did normal FBC LFT's & said all ok. end of. why does no one ever listen? Appointment seemed to go quite well. See update today.

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