Today I followed the advice from you guys and went for blood work. I didnt take medication 24 hours prior to it and early in the morning

[Monasingh]

Waiting for my results and will post here soon. Doctor mentioned about changing my meds to Armor meds. Let's see what happens because my symptoms are terrible...weight gain hair loss depression and much more. I am on 125mcg levo and 10mcg T3.

[SeasideSusie Remembering]

Did you leave off your Levo for 24 hours but your T3 for only 8-12 hours?

In your previous post you said

"also took my medicine 125mcg levothyroxine before the blood work."

If you'd mentioned that you also took T3 then you would have been advised that the time gap between T3 and blood draw was different from that for Levo and blood draw.

If you left 24 hours between last dose of T3 and blood draw then your FT3 result will show as a false low.

[Hidden in reply to SeasideSusie]

I take a small amount of T3 (10mcgs) along with my Levothyroxine and have always left off my meds for 24 hours before a blood test.The phlebotomist always asks how long since I last took my meds before doing a blood test and no one has ever told me to only leave it 8-12 hours for T3. This is the first time I have read this.

However, I will check it out with my Endo next time I see him.

[SeasideSusie Remembering in reply to Hidden]

However, I will check it out with my Endo next time I see him.

Don't expect any medical professional to know anything about the time gap between taking replacement hormone and blood draw for tests. They will say you don't need to leave it off at all because it doesn't make any difference. They have very little training/knowledge of anything to do with thyroid.

The reason for the time gap, as you probably know already as you leave your replacement hormone off for 24 hours, is so that you don't measure the hormone just taken - this will give a false high result. Similarly, if you leave it too long there will be a false low result.

Levo has a half life of 7 days so it hangs around in the blood for a long time.

T3 has a half life of 24 hours, so if you leave a gap of 24 hours between last dose of T3 and blood draw then you aren't getting a result for the normal amount of circulating hormone. Hence the advice to leave 8-12 hours for T3.

[Hidden in reply to SeasideSusie]

I resent your assumption that none of our medical profession have any knowledge regarding the timing of our thyroid medication.You should not be making broad assumptions about people you don't know.

I will continue to have confidence in my Endocrinologist,who has been advising me for 5years or so.

[SeasideSusie Remembering in reply to Hidden]

You may resent my assumption, but if you've been reading posts on the forum and responding as long as I have then you'll know that the majority of doctors don't know much about thyroid. You may be lucky to have an endocrinologist who is actually a thyroid specialist, they are very rare, the majority of endos are diabetes specialists and many of them don't know enough to treat people properly.

Have you seen any of the posts where members have been put on Carbimazole for Graves disease, and the endos haven't even tested any antibodies to confirm this? Quite a few of those recently. And when these members have managed to get the correct tests done, once they've been given the correct information here, it turns out they have Hashi's and not Graves after all, so totally the wrong diagnosis and totally the wrong medication. That's just the tip of the iceberg.

And it's been mentioned many times here, by members who have relatives who have been through medical school, that the time spent on thyroid during their training is half a day.

So if you have a good endo then I am genuinely pleased for you. My experience of an endo was horrific, insisting that only TSH being in range mattered and besides being rude and a bully he made me extremely ill, I had to give up working in my own business and I needed looking after for 2 years, all I could manage was to crawl out of bed to the sofa. I have only progressed by what I have learned on this forum and helping myself.

[Hidden in reply to SeasideSusie]

I am truly sorry for people's bad experiences .I too have been a member here for many years before being sent to see my Endo......he was trained in Karachi.!!

I do not study posts on Graves' disease.I know nothing about it and could therefore not make any contribution that would be of use to anyone.

I have been diagnosed with primary hypothyroidism since 2002.

Thankfully,soon to be 78 years old I am grateful for all the help I receive in keeping as well as possible .

Best wishes.M

[LindaC in reply to Hidden]

You are indeed LUCKY, since current thinking seems to be to take away even Levo from those over 65, let alone prescribe T3 - you are very fortunate in this climate. Take care and be well xox

[Hidden in reply to LindaC]

PS apologies to you Linda for overlooking things said in this reply.However,I thought I had previously understood here that if an Endo had prescribed T3 for a patient,( mine was prescribed 5 yrs ago) it was not allowed to be taken away.My own Endo continues to prescribe my 10mcgs but has said that if I needed more I would have to source it myself.

If my meds were taken away then I may as well go down to the Coop funeral shop and book in.!!

Thank you very much for your good wishes and I send all good wishes to you too.

[LindaC in reply to Hidden]

And to you also Marfit - I'd further responded below without seeing this post from you. The NHS paid for Armour Thyroid for me over several years but I've always sourced my T3 via the source given to me by Dr P.

Yes, me too, I'd be booking my own without T3 - very best to you xox 🌹🌹🌹

[Jodiedebs55 in reply to SeasideSusie]

I second that seaside susie , that's absolutely correct , my endocrinologist told me T3 wasn't necessary and it's the T4 that matters and offered me prozac and a session with a psychiatrist, I'd say possibly 90% don't have any knowledge of the thyroid and that's a fact given the posts iv seen on here , the advice on here is the best advice iv had in 10 years , and anyone that disagrees is a bafoon . End of..

[shaws Administrator in reply to Jodiedebs55]

Is it not surprising that Endocrinologists seem to be unaware that there is Active or Inactive thyroid hormones?

The endocrinologists and apparently their organisations seem to never read or absorb Research about the thyroid gland and what replacements give sufferers the best possible outcome. There has been a number of positive researchers who have proven that a T4/T3 works for many who don't improve on levothyroxine. Many members recovered on NDT which used to be the only replacement prescribed at one time. Now withdrawn along with T3 - patients

forced to source their own if they want a healthier life.

At one time we used to be prescribed NDT - which was withdrawn due to False Statements made by the UK Associations. Dr Lowe send them a Rebuttal and despite three yearly requests for a response they never did respond to him and Dr L died three years later through an accident.

He was not afraid of the Associations who bullied many medical personnel if they didn't follow the guidelines but he did like the truth to be stated.

He also resigned his membership so that he could be independent as did Dr Peatfield as they were more concerned about relieving disabling symptoms rather than a TSH result.

Dr P himself - having hypothyroidism - and studied at the Broda Barnes Institute (I believe) as he himself is hypo. Dr Skinner was the same - compassionate and caring and - for that very important quality - appeared before the GMC a number of times. It was none of his patients who complained and 10,000 testimonials were sent to the GMC saying he saved their lives. It must have been a huge strain to appear before the GMC more than once due to complaints -.....by whom.

Dr P passed on his knowledge to his patients and if you read 'Tears Behind Closed Doors' by Diana Holmes I think it should be read by every single endocrinologist and doctors in this country.

Dr P could diagnose a patient as they entered his surgery as he was of the 'old school' who knew all of the clinical symptoms - before blood tests and levo were invented which has made lots of money for Big Pharma.

Then they withdrew T3 from patients who had recovered on it - either on a T4/T3 combination of T3 alone who were then forced to source their own if they had the werewithal to pay - if not they went back to suffering.

[FancyPants54 in reply to SeasideSusie]

I value every message of help and support you have ever given me SeasideSusie . You and greygoose , shaws and SlowDragon have helped me more than any medical professional has in the past decade.

[LindaC in reply to Hidden]

I would advance that many GPs have little clue and if you believe that endos do... you've hit a gold mine in yours. Good for you! Many on here will be happy that you receive good treatment which you can trust.

BUT, please consider that you cannot take YOUR, highly individual experience, and turn that into resentment in defence of that which too many have experienced to be a cruel, capricious, condescendingly arrogant species. Wow! I truly hope that you never have cause to feel this way; not everyone receives a good level of care.

Most hypothyroid_ees that I've spoken to either stay away from endos or have tales that would make your hair stand on end. I have never ONCE been informed or asked by a GP or an endo about what has been taken/when! Then, when results come back, looking strange [esp. T3], the patient gets 'blamed' for x, y, z.

[Hidden in reply to LindaC]

I can only speak as I find.I sympathise greatly with people who are having bad experiences when it comes to their thyroid care and there are very many,which is the reason that we all need this forum,However,I have to state that it is not ALL bad and unfair to give people the impression that it is.

My Endo was recommended to me here on this forum,by another member who had seen him and when I approached my GP he said straightway that he knew of him as he had attended one of his conferences and made an appointment for me

to see him.

On my first visit ( NHS hospital) he asked me if I would like to try a small amount of T3 as he believed that it might help me.

Also when I first saw him he asked me which Thyroid forum I belonged to?

When I said Thyroid UK he said "GOOD".......stay with them.

As you can see,I am not willing to give members the impression that all endos are useless .....it's not right to do so.There are two sides to every coin.

If that's what we are reduced to I'd rather unsubscribe .

[LindaC in reply to Hidden]

Again, great to hear that you have such a one-off endo! Excellent. Many can't find someone like that endo even privately

It seems that your initial comment: "I resent your assumption that none of our medical profession have any knowledge regarding the timing of our thyroid medication. Similarly, and on your own criteria, why are you making "broad assumptions about people you don't know"? That is somewhat unhelpful for a sizeable amount of people receiving cr*p or no care.

PEOPLE ARE HAPPY WHEN THEY HEAR THAT SOMEONE, SOMEWHERE, IS RECEIVING GOOD TREATMENT... GIVES US ALL HOPE Kind of begs the Q, what do you have to resent?

You further say: "However,I have to state that it is not ALL bad and unfair to give people the impression that it is". Many on here don't need to be given any impression - we know first hand. There is NO ALL in anything and defending endos on that basis, where you must surely know how badly some have been and still are being treated was... You seem to be making huge assumptions about people you don't know, i.e. endos who do not conduct themselves as does yours. Defending a whole profession on the basis of your one instance... you could have reasonably expected someone to say something.

Take care, look after yourself and be well... from someone who has been treated abysmally yet is not resentful.

[FancyPants54 in reply to Hidden]

But he's not that good is he because you are still suffering a lot of symptoms and he's told you that you can't have more T3, which you probably need because 10mcg is very little, unless you source it yourself! So no. He's not very good. Perhaps more clued up than others, certainly than the one I recently saw who was less than useless, but he's not made you well.

Personally I think you were very rude above to SeasideSusie who gives out extremely helpful and kind advice to all who need it. Endocrinologists are often aloof and unhelpful. I paid to see a top one a few years ago. I left his expensive clinic and walked the streets of London back to the station in tears.

[SlowDragon Administrator in reply to Hidden]

Most endocrinologists seem to advise testing 2-3 hours after taking T3, which would obviously be disastrous

My own endo advises 12 hours for T3 and 24 hours Levo

[Monasingh in reply to SeasideSusie]

I took both 24 hours prior to the blood work 😒😒😒

[Stourie]

I'm on t3 only and always leave 24 hours from last dose till my blood test. Jo xx

[Hidden in reply to Stourie]

Thank you to both you Stourie and Monasingh for your replies to me.🌸🌸

My own first reply to Seaside Susie was purely to state that I will check with my own Endo with regard to the gap needed between taking meds and having a blood test,because when the phlebotomist asks when I last took my T4/T3 I 've always said 24hours and no one has ever intimated that it should only be 12 hours for T3. It is therefore something I need to check out for myself.

I am well aware of all the good information that Seaside Susie gives to us,for which I am as thankful for as everybody else,however,I can't support all endos being useless where hypothyroidism is concerned.I have not asked for comments regarding my own treatment and therefore shall ignore those that were made.