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...
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TiggerMe
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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
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.
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.
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 .
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?
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'
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?
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.
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 ... ?
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?
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 🤗
" 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"
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%
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.
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.
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 😆
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?
🤣 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)
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 😁
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 💪
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.
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 😅
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.
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! 😀
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?
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)
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? 😏
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 🚩
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