First NHS Endo blood test feedback... disappointing usual guff 🙄

[TiggerMe]

Sadly not accurate either as the blood test was after 10 weeks on the reduced dose of 600mcg per week levo and 12.5 Tiromel as the prescription for Roma had yet to materialise ( 2 months after initial meeting) and I wanted to get the 'lets lower your levo dose and get your TSH up a bit' nonsense out of the way first 😏

So it takes a 5-6 weeks from test to feedback, to be fair I did miss 2 unexpected calls which I tried to return... expecting emails would be forth coming (I don't have an answerphone, can't bear the jeopardy!) I did emails asking for results, advice and then notifying of my dose increase! Do they really expect you to wait on their every command whilst falling back into oblivion?

Mysteriously my GP did change my Levo script to 100mcg x 6 and 1 x 150mcg during this period which I silently accepted as I assumed it was some internal adjustment that the Endo had instigated 🤷‍♀️🤣

So first threat of 'supervision being dropped'.... go me!! Letter did however included another blood test request

I have responded by acknowledging the importance of FT3/4 results when my seemingly faulty pituitary isn't raising it's game and having never in the past had my TSH in double figures even when FT3/4 were below range and perhaps this needs investigating? Also requesting feedback of cortisol saliva results sent in 6 weeks ago?

Absolutely no signs of thyrotoxicosis, everything still low and slow

Also that I shall be sticking with my current dose regime 750mcg Levo per week and 15mcg Lio and book in for bloods at the end of the month.... might drag that out a bit longer 🙃

This from an Endo on the TUK list...

[SlowDragon Administrator]

0.05 is not technically suppressed according to this

Comment from diogenes in the reply

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

academic.oup.com/jcem/artic...

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.

And this ……Admittedly research was on T4 therapy

ncbi.nlm.nih.gov/labs/pmc/a...

In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

[TiggerMe Ambassador in reply to SlowDragon]

Brilliant thanks SD🤗

I thought with my initial response I'd leave the door open to other explanations and just hold my ground as FT3 & 4 are well within range

These documents will be brilliant if the TSH argument persists... maybe it's just standard spiel that is always incorporated to cover there ar@es?

These documents will go straight into my round 2 file 🔔🔔

I'm guessing the '<' is the issue but if they don't actually have an accurate reading....

[tattybogle in reply to TiggerMe]

yes , the < means that test machine can't measure accurately below 0.05 ...

so you' d have to argue there's no way for him to be sure its' not 0.041 or over ~

and then use that Leese paper above showing "TSH 0.04 - 0.4 (on levo) is no more risky than 'in range' ... (even though they acknowledge some of the subjects may have had over range fT4)

....so why would 'combo' be any more risky than levo only as long as fT / fT3 in range ... etc .

[TiggerMe Ambassador in reply to tattybogle]

It's interesting that MMH goes to 0.01 but NHS and I'm guessing around here it's the same lab only go to 0.05?

I'm going to ignore it and push for other investigations...does low cortisol have any effect on TSH?... and how do they check pituitary function?

....so why would 'combo' be any more risky than levo only as long as fT / fT3 in range ... etc

Good question! I've never had a TSH reading above 7 which surely suggests a faulty gauge? It dropped after adding T3 so how will lowering FT4 bring it back to life?

[tattybogle in reply to TiggerMe]

if it IS same lab ,then that would be an interesting Q to ask . ..I think MMH is Exeter, not 100% sure tho'.

dunno about cortisol / pituitary ~ above my pay grade .

as to whether TSH of only 7 counts as suspicious.... would probably depend how low fT4 /fT3 were at the time . 'a little bit below range' ... or 'bugger all'

[TiggerMe Ambassador in reply to tattybogle]

Yes you are right MMH are based in Royal Devon & Exeter Hospital... don't know if Glouscestershire has its own labs?

2010 before having any idea about thyroid issue TSH 6.2 (0.27 - 4.2) T4 13.2 (12 - 22)

Levo started March 2018 TSH bounced between 0.2 and 5 but no T4 results until

75mcg levo 15-OCT-2019 TSH 5.3 mIU/L ON T4 13.5 pmol/L [10 - 24.5]

Funny looking back I've only ever had 4 x T4 results in 12 years, 2 of those last year!

Edit...

So these latest figures of <0.05 T4 14.5 T3 5.5 how does that tie in as presumably in 2010 I still had some though poor thyroid function yet to be attributed to the fatigue /constipation etc I presented with?

Is there some rough gauge to TSH and T4 levels?

[tattybogle in reply to TiggerMe]

"Is there some rough gauge to TSH and T4 levels?"

the individuals usual/ healthy T4 /TSH levels are 'paired' and move up and down in close relation... but one individual will have a different pairing of 'usual' TSH relative to their 'usual' T4 than another person,

eg. person 4 has lower 'usual' TSH with mid-range T4 ,than person 8 has for similar mid-range T4.

.

[tattybogle in reply to tattybogle]

So . i assume this individuality also applies in thyroid failure .. eg one persons TSH may go to 10 when T4 is only just below range ... whereas another persons may go to 25 .. and someone else's may go to 35 ... ?

[TiggerMe Ambassador in reply to tattybogle]

Thanks goodness for No7's! Or we would be squeezed even more.... I wonder why it is that so many of us only feel well in the higher range? Are the No7's of the world more likely to fail?

[TiggerMe Ambassador in reply to tattybogle]

It was seeing this chart that made me get my daughter checked to see where she falls for later reference.... looks to be ticking over with a TSH between 2-3 full panel to come.... just realised the age range 19-27!! We need a retest for the olds and experienced 🤗

[TiggerMe Ambassador in reply to tattybogle]

Looks like Royal Glos have the facility to test and this interesting snipit from their site

Thanks for making me look 🤗

gloshospitals.nhs.uk/our-se...

My TSH did the classic drop off after adding T3 so why fiddle the T4 dose when FT4 in range?

TSH recovery guidelines

[tattybogle in reply to TiggerMe]

The lab note applies only after Thyrotoxicosis/ hyper... not hypo (unfortunately )

[TiggerMe Ambassador in reply to tattybogle]

She did make reference to being out of balance and over medicated - thyrotoxic is that not when they try to tell us that we are hyper?

[tattybogle in reply to TiggerMe]

Thyrotoxicosis ~ 'too much thyroid hormone' ... so no, not just "TSH low" ... far too high T4/ T3.

ncbi.nlm.nih.gov/books/NBK4....

" Thyrotoxicosis is a clinical state of inappropriately high levels of circulating thyroid hormones (T3 and/or T4) in the body from any cause[7]. It is often incorrectly used interchangeably with hyperthyroidism, which is a form of thyrotoxicosis caused by excessive endogenous thyroid hormone production"

[TiggerMe Ambassador in reply to tattybogle]

I wonder how high is inappropriate, just over 7 or 10.... I guess that is another scale

I thought they were most against over supplementing T4 leading to suppressed TSH?

I have pushed my T3 slightly over range when first adding ( though I always test closer to last dose for my purposes) not been over 5.7 for the official test leaving the 6-8 hour gap and TSH hasn't raised its head since as happens with many when T3 is added... found my sweet spot though 95%

[arTistapple]

I hardly know what to say. They have so much power and don’t really seem to be on our side. They don’t seem to be anywhere near up to date with their info. AND they can just drop us as they please. Private or NHS, does not seem to make any difference. Utterly fed up with the whole shenanigans at the moment myself.

[TiggerMe Ambassador in reply to arTistapple]

I was giving it a go but not really hoping to much for a good result... I shall only be following the advice if it suits me 😉

It is interesting that there is no rush getting back to a suffering patient 😳

[Lalatoot]

I was lucky that my trial of NHS lio lasted into lockdown so I could keep the endo, who was lovely but of the usual mould, at a distance. Because of the restrictions I was able to blindside the endo and manage the trial my way.

[TiggerMe Ambassador in reply to Lalatoot]

Excellent work! This is my plan too.... though the word trial hasn't actually been mentioned as I had already been on Tiromel for 5 months before the appointment? Though they seem to have the ability to drop you like a hot brick whenever they like!

I have just sent the secretary a note to say that I'm rather phone phobic so letters or emails are preferred please add to my file... that should further stall things 😆

[Lalatoot in reply to TiggerMe]

Then you can be away on holiday when the blood test is due. Tick another 2 weeks. If you are lucky they will be so busy they forget about your next appointment. Another month or so. Do they not realise how stubborn a donkey can be?

[TiggerMe Ambassador in reply to Lalatoot]

🤣 you got it! I could have a virus, memory laps, menopausal moment and a..... so many possibilities and then I actually have to try and get a pre 9am slot 🧗‍♀️(mountain climbing Tatty)

[Delgor]

Keep your chin up Eeoyre! As everyone probably now knows I was inadvertently overmedicating for years with not knowing the proper testing protocol ie splitting NDT into two and taking second amount 8-12 hours before blood draw. My TSH was always 0.01 and I was well and very active despite knowing nothing about vitamins or anything else. My latest MMH test showed T4 at 14.1, T3 at 5, and TSH (an unbelievable 0.06) and comments were as follows: "Your results indicate you may have a mild form of overactive thyroid known as subclinical-hyperthyroidism . This normally does not need treating at this stage but indicates you should have your thyroid hormone levels checked regularly in the future and we recommend repeating this test in 3 - 6 months" - this despite having had a partial thyroidectomy and being on thyroid meds for almost 30 years!

I probably would have got osteoporosis anyway as I was never told to look after my bones after having an early menopause; and even when I visited the hospital 9 years ago because of my hip jutting out to one side nobody mentioned vit D or perhaps having a bone scan - was told it was adult onset scoliosis and to come back when in pain. First bone scan 5 years ago showed ok although unfortunately second one last year wasn't at all good despite all the supplements etc. but I've been chronically fatigued again for the past couple of years and perhaps the very low activity levels has had a bearing on things. I'm now looking for a happy balance but also in having some quality of life 😁

[TiggerMe Ambassador in reply to Delgor]

Thanks Delgor, it was wishful thinking that any good might come of this route but I'm keen to push our case and give the NHS gyp, at the end of the day I have the knowledge to do it my way thanks to you lovely lot 🤗

They do only seem keen on dealing with a crisis rather than advising us how to keep well and avoid their services 😩

I've added strontium to my bone health regime rightly or wrongly.... it's a Dr Myhill thing supposedly better than K2🤷‍♀️

It's the fatigue that really wears you down isn't it.... I'm on the adrenal / cortisol correcting next 💪

[Delgor in reply to TiggerMe]

I am sure you will get there in the end - persistence is definitely a virtue! Like you, I'm really grateful to the lovely knowledgeable people on this forum who give up so much of their time so willingly to help others!

Bone health matters have really irked me as for sure I wasn't informed enough - too much faith in docs but all that now changing.

Chronic fatigue - was told years ago I had CFS but got my life back again and now the same has happened again so trying to exclude all the possibilities of which there are many.

Take care my Wonky Donkey Friend🤗

[Jazzw]

Ack, annoying. And factually incorrect. Having a suppressed TSH doesn’t lead to anything.

Dammit. Sorry Eeyore100.

[TiggerMe Ambassador in reply to Jazzw]

Yeah, much as I was expecting from those that have gone before. Like you say high TSH is far worse for you than low.

We strive for change! My job is to challenge the thinking..... The wording 'I would like you to reduce your T4' was all a bit wishy washy I thought rather than a demand.... (that was the next page) so I refused the suggestion... we shall see what reaction that provokes 😅

[GlowCoach Administrator]

Sorry to hear this but actually not surprised at all. That's how it is out there in the real world of thyroid 'care'. I hope you can resolve this.

[TiggerMe Ambassador in reply to GlowCoach]

Thanks, yeah all sadly expected but I'll see what I can do to enlighten this Endo 😉

[Regenallotment Ambassador]

argh more challenges… well done keeping your head on straight and taking it in your stride. Sounds like you have a plan.

Keep on keeping on our beloved donkey pal 🌱💕🌱

[Hypohappy]

Sorry to hear about your struggles. I road that train for years and just got fatter and fatter until I thought I’d pop. Not to mention all the other symptoms. I switched to WDT online. My GP cousin thought I was mad but I ended up getting really well and was almost back to my old self when Covid hit the supply chain. Had to switch to an endo who agreed with natural animal products such as ERFa and Armour due to Covid causing unavailability. Many mainstream medical professionals disagree with Desiccated thyroid treatment but it saved me.

[TiggerMe Ambassador in reply to Hypohappy]

Thanks, I'll see what I can do to further our cause with this Endo and then like you say I might give NDT a go... beef gives me wind though 🙄😆

[Hypohappy in reply to TiggerMe]

yeah I think stomach acid is low and that’s why we battle to digest meat! I eat mince and take pepsin… no idea if they even makes sense but it works for me.

Most NDT is porcine … which might make a difference to you! 😀

[TiggerMe Ambassador in reply to Hypohappy]

Interesting that NDT is porcine that'd be a whole lot better, I am using Adrenavive which is bovine 💨💨 as I couldn't source any porcine adrenal cortex.

Another avenue to investigate though consistency, cost and supply seems more of an issue?

[Hypohappy in reply to TiggerMe]

Hi, perhaps research Armour. That seems to be a fairly consistent quality. I was given a prescription for that as ERFa has lactose.

[TiggerMe Ambassador in reply to Hypohappy]

Shocking price tag! I've a stash of Tiromel which I got on well with before the surprise NHS Lio script

[tattybogle]

Going straight to "I will be unable to monitor you " seems wrong to me ?

I thought there was a process ?

.. aren't they supposed to send you out of the class to sit in the corridor first .

then detention .

then to see the headmaster .

then a letter to your parents ?

[tattybogle in reply to tattybogle]

Have you considered disguising yourself as a Zebra like this one has .. I hear doctors are more amenable to treating Zebra's ( as long as you can prove you're a real Zebra and not a Horse)

.

[TiggerMe Ambassador in reply to tattybogle]

Aaahh.... I want to be a Zebra not a droopy donkey anymore.... total stripe envy 🤗

[tattybogle in reply to TiggerMe]

i dare you to go to you next appointment wearing Zebra tights.

[TiggerMe Ambassador in reply to tattybogle]

With my donkey jacket or without? 🤣

[tattybogle in reply to TiggerMe]

asking a scarecrow for style tips ?.... That's sad .

[TiggerMe Ambassador in reply to tattybogle]

Eyebrows a la Tatty remember 😏 perhaps once I've been a zebra for a while I'll aspire to scarecrow sidekick 🙂

[TiggerMe Ambassador in reply to tattybogle]

Haha, Wow that takes me back to ugly school uniform days 🤣

I did mention in my letter to the the secretary that I hadn't been advised how the system works with this kind of supervision 🤷‍♀️ you might think that my initiative to increase my dose which made an improvement would be considered a good move and the only inconvenience to them was to read an email or two? 😏

[Dandelions]

Keep on keeping on, eeyore! Sounds like you’re doing a great job. Hope your masterplan goes to plan.

[TiggerMe Ambassador in reply to Dandelions]

Thanks Dandy..... Vive La Revolution 🚩

[Dandelions in reply to TiggerMe]

🚩 🚩💪

[Mugs19]

You are an inspiration! Just reading about your problems gives me the urge to bang my head in the wall. If you can keep going then so must I.

[TiggerMe Ambassador in reply to Mugs19]

Thanks 🤗.... I'm really just a stubborn old donkey with a great support team and when in this situation where the odds are stacked against our wellness it brings out the mule in me!

We all know greater wellness is achievable, as many here can testify but the hurdles put in our way are soul destroying.... I shall keep waving my revolution flag 🚩