Help: Hi everyone. I have recently increased my... - Thyroid UK

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DoeStewart
DoeStewart

Hi everyone. I have recently increased my levothyroxine to 100mg each day, this was done with much discussion with my GP who wanted me to remain on 100mg every other day with 75mg the days in between. As with most others on this site, the GP is only interested in TSH and T4 and these are the only tests performed.

Blood test results April 2018 on old dose of Levo

TSH 0.43 ( 0.30 to 5.50)

T4 19.7 ( 11.5 to 22.7)

Bloods 29th June 2018 on 100mg each day

TSH 0.27 ( 0.3 to 5.50 )

T4 21.1( 11.5 to 22.7)

My GP has requested to see me as new TSH is below the range. I had 7/8ths thyroid removed 30 years ago and GP at my last appointment we as totally unaware of this fact. Can someone inform me as to which tests I need privately to give me a full picture. I only received the increase in my levothyroxine as I had been feeling unwell and hair falling out in huge amounts. The hair loss has slowed down but I do not want my medication lowered again. Any advice would be most welcome.

59 Replies
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TSH and T4 are fine where they are providing your T3 isn't over range, if you feel well you don't need to reduce dose but you do need T3 tested.

DoeStewart
DoeStewart
in reply to bantam12

Thank you for reply. I will need T3 tested privately - GP practice won't do it. Any other tests recommended?

medichecks.com/thyroid-func...

medichecks.com/thyroid-func...

The most important thing to test is your fT4 and fT3. The above two links both cover a lot of useful other tests, including nutrients that are critical for thyroid function.

It will be interesting to see what your fT3 level is. Levothyroxine is just T4 which is a 'storage' hormone, and needs to be converted to T3, the active thyroid hormone, in the body. It may be that you're not converting very well. If you're not converting it very well (which it sounds like you aren't) then it converts instead to Reverse T3.

DoeStewart
DoeStewart
in reply to ShinyB

Thank you for that info, I will look at the links you have posted. I have wondered about T3 but it's never been tested in the 30 years since my operation.

NickP1
NickP1
in reply to DoeStewart

You really need to know your T3 levels, more so than anything else...

DoeStewart
DoeStewart
in reply to NickP1

Yes it seems to be so very important. It beggars belief that NHS doesn't want to test it??.

NickP1
NickP1
in reply to DoeStewart

Cost

DoeStewart
DoeStewart
in reply to NickP1

Oh of course 'cost' - I take it not so much the cost of the blood test but more the cost if the patient needs T3 treatment?

ShinyB
ShinyB
in reply to DoeStewart

And the cost to their egos.... It's not just the NHS, it's all over the world, that there is this medical belief that if your TSH is ok, then you're fine and that supplementing T4 only will benefit all. There is lots of research showing this isn't the case.

If your doctor will refer to an endocrinologist, they can test fT4 and fT3. Might be worth a try. But you'd still have a fight on your hands to get T3 prescribed.

Such a bad state of affairs :(

DoeStewart
DoeStewart
in reply to ShinyB

Very bad state of affairs. The other problem of course is that most endocrinologist are diabetic specialists and not thyroid. My first ever appointment with an Endo was when my thyroid was hyper,.I attended his diabetic clinic !!

ShinyB
ShinyB
in reply to DoeStewart

Yup!!

DoeStewart
DoeStewart
in reply to ShinyB

That's what we're up against.

ShinyB
ShinyB
in reply to DoeStewart

I've long given up my naive belief that doctors know best........

DoeStewart
DoeStewart
in reply to ShinyB

I've come round to same belief myself..

ShinyB
ShinyB
in reply to DoeStewart

Dear me, I've just read your profile. That's awful!

ShinyB
ShinyB
in reply to ShinyB

What you're going through, I mean. Just in case you think I was criticising your profile ;-)

DoeStewart
DoeStewart
in reply to ShinyB

Haha - understood completely.

DoeStewart
DoeStewart
in reply to ShinyB

Yes, not a good read I'm afraid. Been fobbed off quite a bit over the years.

ShinyB
ShinyB
in reply to DoeStewart

Same here. And still being fobbed off. Finally took decision to self medicate with the support and help of people on this forum. I've also just booked to see Dr Peatfield, who is a real thyroid specialist - he's in his 80s, and possibly one of the last really informed specialists in the UK.

DoeStewart
DoeStewart
in reply to ShinyB

Wow how lucky are you getting to see someone who knows what they're talking about - that will be a revelation. I may end up down the self medication road myself but I don't care any more what Docs think, I need to feel like me and not some faded copy of myself.

ShinyB
ShinyB
in reply to DoeStewart

He's in Sussex. You don't need a referral to see him. He's a retired GP. He can't prescribe now, but he really knows his stuff. He looks at signs and symptoms, rather than blood tests which just don't always reveal what's going on. I'm really excited about going to see him :D He wrote this book, " Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it".

I really identify with that last statement. We need to get our health and our lives back, eh?

DoeStewart
DoeStewart
in reply to ShinyB

Yes the book titles really show the problems we all have, I must read up on his books. I wish he was nearer, I live in Merseyside so a fair way away for me. I wish there was someone nearer to go to. I hope your appointment gives you answers, be interested to know how it goes.

ShinyB
ShinyB
in reply to DoeStewart

My parents are from Merseyside :) He used to travel further afield and hold clinics in different areas of the country, but he now just works from Crawley. He can't drive any more. I will post about how it goes :)

DoeStewart
DoeStewart
in reply to ShinyB

I wish someone would chauffeur him round 😊. Small world ShinyB, I live in Wallasey, across the water from Liverpool. Would be lovely to hear how you get on - good luck

jgelliss
jgelliss
in reply to ShinyB

ShinyB

Keep us posted after your appointment . It should be very interesting and very informative . I think you won't be disappointed .

ShinyB
ShinyB
in reply to jgelliss

I'm really excited about seeing him! Will post about how it goes. Thank you :)

jgelliss
jgelliss
in reply to ShinyB

I'm very excited for you too . Wishing you Much Success .

ShinyB
ShinyB
in reply to jgelliss

That made me smile :D Thank you!

My local hospital, with attached medical school, has 10 Endo’s all appear to be diabetic specialists- what hope is there for the next generation of doctors?!!

ShinyB
ShinyB
in reply to DoeStewart

Ditto here in 50 years! I only found out my fT3 was too low when I paid for a medichecks private test last year. At a minimum, get your fT4 and fT3 tested at the same time as this will give you a good picture of whether you are converting the T4 in levothyroxine to T3. Best of luck to you :)

DoeStewart
DoeStewart
in reply to ShinyB

Thank you ShinyB - I will follow your advice.

marigold22
marigold22
in reply to ShinyB

Apologies for butting in here ShinyB . I have always been under the impression that if someone is only taking T4 (Levo) & aren't converting very well, then it converts instead to Reverse T4. Have I been incorrect?

ShinyB
ShinyB
in reply to marigold22

Hi marigold :) My understanding is if you don't convert T4 to T3 very well, than it converts instead to Reverse T3. Apparently this can also occur if you're taking NDT which has a fair bit of T4 in it. So same understanding as you, I think! x

As they have not tested your free t3, you can suggest that this will tell the whole story. Free t4 is the inactive hormone and has to be converted to t3 in the body. The tsh is a pituitary hormone and will have lowered because of your increased levothyroxine. The most important thing is your health and how you feel. With 7/8 of your thyroid removed, you are dependent on thyroid hormone supplementation and your GP needs to focus on your thyroid health, rather than tsh, which is a reference range for healthy people who have a well functioning thyroid. If the GP is unwilling to test t3, you may need to get the test privately through eg Medichecks.

Below the range is not unusual in treatment of hypothyroidism. As long as it is not suppressed, it can be the place where most people feel better.

DoeStewart
DoeStewart
in reply to Wildbird

Thank you Wildbird- when I remind GP's that I have had 7/8ths thyroid removed they frantically start searching on my notes? Not that it would make any difference as none of the Docs appear to have a clue about thyroid help.

In that case, it wouldn’t be unreasonable for you to request a referral to an endocrinologist who DOES know about the absence of nearly all of your thyroid. You deserve and need to be treated properly and 75mcg could never have been adequate replacement for you.

DoeStewart
DoeStewart
in reply to Wildbird

No your right 75mg never felt ok to me. At one point I was on 175mg per day, stayed on this for about 9 or 10 years. I have no idea what happened to make them reduce dose down so much, I'm afraid I have no blood results for this period of time, I naively relied on medical profession to know what they were doing? I have only very recently started to request blood results and keeping a note of them.

Wildbird
Wildbird
in reply to DoeStewart

And tracking your results is what you need to keep doing I’m afraid. Unfortunately many GP’s seem to have very little idea of how to treat thyroid problems effectively. One GP that I saw actually believed that the reference range in tsh for a treated person was 10! I discovered that the labs had being flagging up that I was under replaced for three years, he had been telling me that my results were normal. We have to look out for ourselves and learn what we can, so forewarned is forearmed.

DoeStewart
DoeStewart
in reply to Wildbird

Yes I agree and that's what I'm planning to do, if Docs won't help me then I'll help myself. I have found that the Doctor just ignores me when I try to tell her the issues with your health when hypothyroid - goes straight back to TSH is fine or your over medicated !!

Wildbird
Wildbird
in reply to DoeStewart

I take a printout of my results and then list the symptoms that I still have. I find that GPs respond better to the written word. They are surprised that we know anything I guess, it’s a case of having too or becoming very unwell.

DoeStewart
DoeStewart
in reply to Wildbird

Good point Wildbird. I think sometimes the medical profession feel threatened when the patient knows more about their illness than they do? Most of them don't know how to treat us, not that interested in symptoms ( try to pin them on something other than thyroid) and back in a circle to TSH !!!!

Wildbird
Wildbird
in reply to DoeStewart

It still shocks me that thyroid problems are treated in primary care by doctors who only had a tiny amount of training. As endocrinologists don’t deal with hypothyroidism on a regular basis, they can’t learn much about it either, so it’s a circle of ignorance. It’s not good enough for us, so we will keep raising awareness until they listen 👂

DoeStewart
DoeStewart
in reply to Wildbird

That's it exactly Wildbird - we need medics who are fully trained in problems with thyroid - not a Jack of all trades

DeeD123
DeeD123
in reply to DoeStewart

I hope your aware that you can ask for copies of all your blood tests now with no payment. If I were you I would do just that. If they see your looking back they will be more careful of treatment in the future. They legally have to give them to you.x

Hidden
Hidden

Hi it’s only ever so slightly lower and that could be due to time of the test, TSH higher early in the day. I would argue the GP look at symptoms and if you can delay them for another 6 to 12 weeks and record how you feel in a diary. See if you can show you are better. If you want to do a private test there is medichecks, Blue horizon and a couple of others. Unfortunately most GPs won’t accept them. But I find you have to take control of thyroid health because GPs won’t..

Good luck x

DoeStewart
DoeStewart
in reply to Hidden

That's a good idea, I will suggest that to my GP. It seems ridiculous the Doctors not taking any notice of private test results - why is this? I would still have private testing done for my own records as if my T3 needs improvement then chances are I would be sourcing this myself anyway.

HiddenThis reply has been deleted
DoeStewart
DoeStewart
in reply to Hidden

Thank you for that, yes I shall definately get some private testing done.

SlowDragon
SlowDragonAdministrator

You need to also test vitamin D, folate, B12 and ferritin too

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Thank you slow Dragon. Do I still need TPO and TG antibodies testing if I have had 7/8ths of thyroid removed?

SlowDragon
SlowDragonAdministrator
in reply to DoeStewart

Probably not, but they get tested as part of the thyroid bundle

Also .....you never know, some have had a surprise and found they do still have high antibodies

Thanks Slow Dragon- I may as well get the lot tested then

SlowDragon
SlowDragonAdministrator
in reply to DoeStewart

Make sure to do test as early as possible in morning and fasting and do not take Levo in 24 hours prior to test. Delay and take immediately after

If taking any iron supplements stop these week before.

Vitamin B complex stop 3-5 days before

Extremely common to have low vitamin levels when not on high enough dose of Levothyroxine

Thank you so much for all your help and advice, all replies have been greatly appreciated. Once I have results of private tests I will post on here.

I always have a Blue Horizon test (thyroid plus 11) this test gives you all of the information

you will need. Post the results on here and the ranges for help.

Don't forget to take the test first thing on an empty stomach if taking Levo leave this off

for 24 hours prior to the test.

I take this test only once every year it gives a clear indication of everything to keep me feeling well.

That's a good tip, once a year check up on everything not just TSH and T4 at Docs. I've just been looking at Medichecks thyroid ultra plus vits- I take it this is suitable too?

I don't know about Medichecks the thyroid plus eleven does TSH, T4 FT3 both antibody tests B12, Folate, Ferritin and Vitamin D plus two others sorry I have forgotten I would look it up but I have the removal lorry and men moving us back to the UK.

Oh Bunnyjean please don't worry, think you have enough going on. Where are you moving from? I will look up the blood tests you have recommended.

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