Follow up on Referral Letter

[Gingernut44]

As promised by my Doctor, I picked up my copy referral letter this morning. He had included my biochemistry. Now, something I didn't know, he had listened to me regarding only testing TSH levels (I took him a copy of Dr Tofts article in Pulse Magazine and also a copy of Diogenes "Time for a reassessment of the treatment of hypothyroidism") so, give him credit for this, he requested the Doctors Lab to also include the FT3 test on my next bloods and sent them a copy of both the above articles. Here's the crux, he (my Doctor) received a reply from the Consultant Chemical Pathologist and Metabolic Medicine, a copy of which he included with my referral. Now I'm glad I read this after my blood test as my blood was boiling after. I've typed out the letter below as it is quite difficult to add as a photo because the font used is so small, so here goes:

...…………………. Thank you for your letter regarding this 74 year old lady on thyroxine replacement. As you mention in your letter she had hyperthyroidism which was treated with radioactive iodine in March 2018.

The simple answer to your question is of course she can have her free thyroid hormone markers checked. However, I would say that there is no point in doing both T3 and T4 as there is no reason to suggest that she has a problem with converting between T4 and T3. I would only do this if she had an inappropriate TSH with normal T4 and was taking some medication that potentially could interfere with the conversion such as Amiodarone. However it is perfectly reasonable in her situation to request a Free T4, however I would bring your attention to the fact that in February 2019 this was done. Her TSH at the time was raised at 7.51 but her free T4 was 15.5. This suggests that she is taking adequate replacement but possibly suggests erratic compliance.

****** How dare she, that was the blood test I had after my Doctor had temporarily stopped my Levo for six weeks but she would not know that ****** grrr

She goes on to say ….. I would suggest on her next blood test repeating both the TSH and the Free T4 and this should be adequate enough to give us enough a full picture.

In regards to the articles that you mentioned by Dr John Midgley, I think we need to be slightly wary of changing clinical practice based on what is essentially an opinion. NICE is about to release extensive guidelines on thyroid function testing and this will be a much more full and evidence based review. There obviously are many people who are now asking for both Free T4 and T3 and also arguing that they need T3 replacement and hopefully this NICE guidance will help us navigate these questions.

However in this lady's case I would merely do a Free T4 on the next bloods and if this is reassuring then I think from here on in she should just use TSH.

Yours sincerely

Her Name ...Consultant Chemical Pathologist and Metabolic Medicine ...................

This is the sort of arrogant person we have to deal with - she thinks she knows better than my own Doctor and she doesn't know anything about me or my symptoms. Her opinion of the NICE "extensive Guidelines and full evidence based review" is really worrying.

Edited to alert diogenes

diogenes : What do you think of her view on your new paper?

[jimh111]

This is so annoying and I find it difficult not to make a generalised comment about 'chemical pathologists' / 'biochemists' or whatever they call themselves, except I know some are excellent. Firstly, it's none of their business they are not aware of the patient and not clinicians. Secondly, The Doctor's Laboratory charges 92p to run an fT3 assay ibshypo.com/index.php/cost-... . The cost of writing this misleading letter is way beyond the cost of a score of fT3 assays. This person shouldn't interfere and clearly has too much time on their hands.

'Her TSH at the time was raised at 7.51 but her free T4 was 15.5. This suggests that she is taking adequate replacement but possibly suggests erratic compliance.' This suggests the replacement is not quite adequate, TSH is too high. 'Erratic compliance' of levothyroxine would not cause TSH to rise whilst fT4 was normal. Erratic compliance of liothyronine might do this but in my experience the last thing we patients do is skip hormone doses, we usually want more!

'There obviously are many people who are now asking for both Free T4 and T3 and also arguing that they need T3 replacement and hopefully this NICE guidance will help us navigate these questions.' Nasty piece of work, they obviously want to stop patients having liothyronine, they have no apparent knowledge of hypothyroidism and are sticking their nose in.

My initial reaction is to make a formal complaint about this person but as your doctor is very reasonable and gave you a copy of this letter I would resist. It's more important to support your doctor than sort out this toe-rag.

[Gingernut44 in reply to jimh111]

Hi jimh111, I totally agree, my Doctor was obviously taking in what I had said after he had made the mistake of withdrawing my Levo for six weeks and making me really hypo. I sincerely hope this hasn't put the mockers on my burgeoning relationship with him regarding my hypo condition.

[SlowDragon Administrator]

NICE proposed new guidelines state ....TSH testing is essentially all that is required

nice.org.uk/guidance/indeve...

To get full testing you will very likely need to do so privately

After being hyperthyroid TSH is unreliable and often stays suppressed despite low FT3 and/or low FT4

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common.

Low B12 very common as we age, but especially if hypothyroid

Vitamins need to be optimal

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Research showing 20% Patients with no thyroid function can not regain full health on just Levothyroxine

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

Indepth research into T3/NDT - very positive

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

[Gingernut44 in reply to SlowDragon]

Hi SD, I know all the necessary steps to take regarding timing of blood tests and nutrients etc since reading lots of posts on this forum, especially yours, regarding all necessary tests, that's why I got the nurse to do my Medichecks Ultravit bloods this morning (luckily without charge as she already had the needle in my arm for my other bloods !) - what I need is someone superior to myself to tell that idiot Pathologist, she obviously thinks she knows more than Dr Toft and Dr Midgley. I would love to send her a letter but don't want to stir things between her and my GP at the moment. I'm definitely taking this letter with me to my Private Endo appointment on Thursday evening and see what he thinks about it.

[shaws]

If you didn't have a blood pressure problem before you read this letter, I am positive you would have afterwards.

This is a typical response to 'keep things tidy' and a blatant statement which the majority believe, i.e. that levo alone is perfect. God Forbid as they may as well give me nothing at all as I was far more unwell before I diagnosed myself as by then my TSH was 100. Not one professional could diagnose me through clinical symptoms (I didn't have a blood test either), which was the way we were diagnosed before the introduction of the stupid TSH plus levothyroxine fiasco for many people.

If you want to address another person onto your post you have to put an @ sign before their name and after the first few characters a choice is given, i.e.

diogenes

[Gingernut44 in reply to shaws]

Thanks Shaws, I was wondering how to do that. I will edit my post so that Diogenes is alerted to it. I must admit, I was absolutely fuming, especially as I was running down my Doctor for being so stupid, I think he was trying to make amends for his mistake re taking me off Levo. I really hope this hasn't caused him to regress.

[shaws in reply to Gingernut44]

I've alerted diogenes as his name (above) has turned blue

[Gingernut44 in reply to shaws]

Thanks Shaws - I hope he's sitting down when reading it. Perhaps he could give that woman a kick up the proverbial.

[shaws]

I am quite sure that many of the professionals (medical) have hypothyroidism as they cannot think straight and do not know the difference between T3 and Free T3. No wonder we get so exasperated as they are supposed to be the knowledgeable people we consult, instead we find we have to search the internet to get some semblance of of truth and experience. I would like them all to be dismissed or to treat people who don't have hypothyroidism. They are after all being paid by the NHS and it is us, the patients, who have to take the brunt of these unknowledgeable 'specialists'. I doubt they know that the body should contain T3 or that it is needed by the body to function normally, i.e. and that the brain and heart need the most.

[Gingernut44]

Not that I would normally wish ill on anyone but I would really love that women to become hypothyroid and suffer the ongoing symptoms that I have considering I'm supposed to be "adequately medicated", she may then change her mind.

[MissGrace]

And I wish they’d just be honest - ‘don’t test FT3 because it might show an issue and then the plebs will be pushing to be prescribed it and it’s too expensive.’ All these ‘people arguing for T3’ need to be silenced.

And I love the paradox we have seen on this site quoted from medics before ‘there is no need to test T3 as there is nothing to suggest there is a conversion problem’ - how the hell can they know until they test it??? If you are still symptomatic then it is an avenue that needs due consideration.

I have to laugh, because otherwise I would cry, or my head would explode. 🤸🏿‍♀️🥛

[shaws in reply to MissGrace]

I'm sure our blood pressure goes haywire when we read the 'experts' explanations.

[Gingernut44]

You've hit the nail on the head- they must think we're all stupid

[silverfox7]

By virtue of taking Thyroid meds it shows we already have had a problem so why can't they realise they still need to find out what that was and test everything they can to they do and then make sure the right pathway is followed and the correct testing done each time. I'm not sure where they think the magic wand comes into it!

[Gingernut44 in reply to silverfox7]

Hi Silverfox, because if they did all the necessary tests, we would want to be "medicated" properly and that is not their intention

[silverfox7]

Wishful thinking!