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A suggested gift to a doctor diagnosing hypothyroidism or treatment.

I've finalised what I hope may be useful to some here as a document to leave with your doctor. On occasion it might ring bells.

To the doctor

To the doctor

. You and I are meeting to discuss my health problem that I suspect (know) is associated with hypothyroidism. I’m sure we both want to come to a conclusion and treatment that best suits my particular state of health. Therefore before we start, I’d like to put in front of you the ideas and concepts that modern thinking on thyroid function has developed. At the moment, it seems that TSH alone is used to monitor treatment and that thyroxine (T4) is regarded as the universally satisfactory treatment. It seems also that a decision as to satisfactory treatment by T4 is to place the patient’s TSH anywhere within the reference range for healthy people. This attitude is merely a statistically based one, and takes no account of my individuality in terms of my natural FT4, FT3 and TSH levels which all act together to define my unique health.. I put the following points to you:

1) In health, each person has their own unique set of blood concentration values for TSH, FT4 and FT3 which together interact to define their healthy state. T4 is the relatively inactive precursor of T3, the active hormone that defines health. Especially for FT4 and FT3 the values throughout life occupy a restricted region of the reference ranges typical of the individual, which are far more closely drawn within the range than the reference range that describes everyone. TSH is more variable, as throughout a day its values alter significantly, with a peak in the early hours of the night, thereafter declining through the day until the next peak. It is therefore important at what time of day TSH is measured

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2) Therefore, as nearly as possible, therapy in disease should attempt to regain the values (most importantly) for FT3 that originally applied in health. After all it is the T3 in the body that drives metabolism and neither T4 nor TSH.

3) But we have a problem, because we don’t know what that was, because it wasn’t measured when we were healthy. Inevitably therefore finding the original situation is a matter of trial and error. But it is not acceptable merely to “normalise” my blood levels somewhere within the normal range, because I only occupy a tight region typical for me. Also we have a difficulty in that the doses of T4 are very crudely determined in 25 ug steps, whereas my healthy situation is much more closely defined.

4) So there arises a serious question. If I had an FT3 and FT4 unique to myself in health, which we don’t know, how am I to regain this by therapy on T4? Surely only by trial and error and my response to therapy. But since we’ve agreed that my optimum values are not the same as the entire range, it can’t be logically right to just put me in the normal range for any parameter (TSH, FT4 or FT3) and say that I am properly treated. It’s more complicated than that (open-mouthed doctor stunned by irrefutable logic !).

5) I’d now like to propose what I think you’ve been taught. That TSH from the pituitary stimulates the thyroid gland to produce T4. The T4 then goes into the circulation and is converted to T3 (the active hormone) as suitable for health. But my thyroid is damaged (lost). So you give me T4 to replace the lost T4 no longer supplied by the thyroid. In doing this you restore my TSH to what it was before I became ill. Therefore, get my TSH back somewhere in the normal range and all must be well (in ALL cases). Therefore all you need to measure is TSH.

6) Unfortunately, new studies show that is completely wrong. First TSH stimulates the thyroid to produce BOTH T4 and some T3. Both enter the bloodstream and some T4 is converted to T3 as you were taught. But now the FT3 that governs my health is made up from two sources, the thyroid and body conversion. And the thyroid’s direct contribution is very important even though it is apparently a minor contributor to T3 production overall.

7) The T3 produced by my thyroid direct is an important controller of the body’s conversion of T4. As my thyroid declines, it tries to keep its production of T3 as close to normal as possible, even though my T4 is lowered. So the level of FT3 from thyroid and body conversion is kept as close to natural as possible both by the thyroid’s attempt to maintain its T3 production and increased T4-T3 conversion rates by the body.. Only when the thyroid has virtually gone, does the whole system collapse and body conversion of T4 by therapy has to take over completely.

8) So, we have two different situations: one where I’ve got some thyroid left, and another where I have none at all. The treatment of these situations is entirely different. But we don’t know which situation I’m in (for those who haven’t had their thyroid completely removed/destroyed). So once again treatment has not to be by rigid biochemistry, but by trial and error until I achieve something closer to original health. This is subjective and not objectively obtained by biochemical results.

9) We are all different. Our thyroids are different in size, and differ in their production of T4 and T3. Some people’s thyroids produce more T3 direct and others less. The combination of this T3 and body T4 conversion sum up to produce health FT3 levels. When we lose our thyroid, then we lose the T3 produced by it. This has to be made up by extra T4 conversion from T4 therapy. But to get to this state, more T4 has to be given than the thyroid produced in health, to force the body’s conversion to make up the difference. This, because T4 suppresses TSH, will give a lower TSH to achieve this than when in health. Therefore the TSH range suitable for health is unsuitable for therapy. Values lower than the healthy range are therefore suitable and ineivtable for proper treatment control. In certain cases, undetectable TSH may occur if the conversion capability of the patient is sufficiently restricted – but given normal range FT3 this does not matter. Suppressed TSH when one has some working thyroid left means something quite different (and undesirable) as opposed to those with no working thyroid at all.

10) If someone, whose thyroid T3 constitutes a higher proportion of the total T3, loses their thyroid entirely, then the body T4 conversion from T4 mono therapy may not be able to make up for the loss of thyroid T3, however much T4 is offered. It is this minority of subjects who can never sufficiently recover using T4 alone. These are the patients who will need T3 in some form in therapy to restore the FT3 to their unique healthy level. I believe I may be one of these. This can be discovered by measuring my FT4 and FT3 on a given T4 dose. If the FT4/FT3 ratio is above 4.5/1 then this gives suspicion I am not converting the T4 to T3 sufficiently well and T3 may also need to be given.

11) All these complications mean that simply using T4 therapy to put me somewhere in the "normal" range for TSH or FT4 is insufficient. FT3 is the measure to use in therapy control as you and I do not know the exact level of thyroid destruction (omit if not applicable to you). It really is a matter of trial and error and more liberalism in therapy choices. Not only T3 but desiccated thyroid extract should not be ruled out. There are allegations that DTE is not well controlled as to hormone content. This is not true as the product has to obey the various Pharmacopeias and has adequate quality control by rigid requirements. Furthermore the allegation that DTE does not contain the “right” relative quantities of T4 and T3 is also a red herring. T4 mono therapy is even more nonphysiological than that, but is the preferred mode of treatment.

You cannot both argue that DTE is nonphysiological when T4 is even more so.

12) I hope these comments will help us both to achieve a satisfactory outcome as regards my treatment and reattainment of health

Information toAccess:

Front. Endocrinol., 22 December 2017 | doi.org/10.3389/fendo.2017....

80 Replies
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It is excellent, thank you for this.

But how do you get a busy GP to actually take the time to read and thoroughly digest it? My last GP was very nice and tried to work with me to an extent (always going by TSH of course), but whenever I handed him any paperwork and asked him to read it, he simply would not even take it.

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Perhaps send it to them ahead of the appointment with a direct request for them to read it before seeing you?

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I've sent info in advance, taken it with me... you name it - recently told that 'They don't get paid for reading it'. Seriously, couldn't make this up!

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Hi Linda

They're paid to provide competent care, and if reading something relevant means they gain the competence to treat a particular patient, then read it they must! (Try it and see 😏)

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I'm not sure with chronic issues that they've any clue about 'competent' or 'care'.

Thank you Hillwoman, I already have... to the point that I have to keep doing it because they simply ignore it all, then they point to the documents [mine and references]... and question [via the practice manager - who said they're not paid to read stuff] why I keep going back to the past!? Err, the same ailments, because no one is listening and things are getting worse... and worse. I now take a sheet and talk them through the copy given to them... the list is growing.

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Suffering saints, I don't know how you keep your cool.

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I know, worst thing is as part of one of my work roles was to advocate for those being put in dreadful situations by medics... I know the ropes but it just doesn't work well when it's you. My best advocate colleague has himself become quite ill... 'Nowhere to Run' :-)

I'm working on my energy levels with a wadge of supplements [big heart guys and Dr M] for that purpose... hopefully, by Spring 2019, all guns blazing, eh?

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Fingers crossed. :-)

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Juat because a doctor does something, it does not make it right that we should just accept it. diogenes gift is a brilliant explanation of the lack of logic in treating a patient according to TSH values. I would read it out to him/her and ask him/her if s/he understood it. Patients have to stand up for them sleves and challenge illogical behaviour.

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Unfortunately my GP refuses to consider my paperwork or notes, refuses to confirm or supply copy letter on my records from Endocrinologist, instead advising I should have been told to ask for a copy at appointment, so contact Endo's secretary. She refuses to do an achilles reflex test, saying, 'what's the point?' Confirms B12 no longer on her prescription list, ignores low Vitamin D level, sees no point in giving up gluten if you have Hashimoto's. 'WHY?' she asked, producing huge shoulder shrug. However she smiles a lot, tells me she knows nothing about thyroid and confirms I'm the perfect patient. She'll learn a lot. I'm getting there.

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Sorry that was for ... you

Mx🌹

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Sounds like it's time to find another doctor. Perfect patients don't get the best care. And I believe patients are belittled by being called the perfect patient. Might it serve the doctor's agenda to keep patients in their place by inferring that 'perfect patients' are more desirable?

I have at times been the patient from hell-no tantrums but stubborn and pushy. Maybe not politically correct but I usually get better care in the end.

It's sad though because for every skirmish won there's probably another one not too far down the road.

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Love this and will be forwarding a copy to my doctors surgery

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Great explanation. Thank you.

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Haha ...go girl !

Mx🌹

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Thank you for setting this out so clearly 😊

My sister and I have Hashimoto's as did my father and his siblings. In the last 2 years I've found a balance of health - 25 years after original diagnosis - and really don't want my children to hit the same treatment walls as my long and winding thyroid journey.

Point 3 - not knowing what my healthy TSH / T4 / T3 levels *were* is a regret I've often shared with my GP. She agreed to submit bloods to identify my daughter's "healthy" levels when she turned 18. As her TSH was in range, the lab didn't test T3/T4...

Now both children are over 18, as a family we've talked about getting TSH / T4 / T3 via one of the fingerprint tests. Could you recommend the most appropriate to identify their healthy thyroid baselines?

Many thanks 😊

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Both Medichecks and BlueHorizons can help. They have a variety of tests you can choose from. I organised tests for my 9 and 10 year old and included antibodies and vitamins (B12, D3, folate & ferritin). Medichecks don’t deal with children under 18 but BH we’re happy to help. I wouldn’t have thought of doing this if it wasn’t for this excellent forum.

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Brilliant!!! This is really helpful, thank you.

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THank you diogenes. I am inspired by on eof out members who is saying that everything re out symptoms and history need to be documented and am inthe process of doing this myself I think this could be a great addition to add to my letter. Gps are very busy and relucant to read stuff but having it included on our notes is addedd pressure and evidence.

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Since 2008, I've documented relevant health events/history... seem to ignore it BUT so pleased that I did this. Dr Skinner was delighted with a x1 sheet of A4 depicting birth - to then 2010. Much longer list now... always good to document.

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Yes but also as well as our own documents, making sure our own voice is heard in our medical notes. i have just sent my previous endo a long letter with updates.

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Thanks. Yes, I've got mine and - too ill right now [freezing cold all summer, yes even THIS summer, with heating only off for two weeks :-( ]. Was surviving OK until Jan 2015.

NHS Endo - un-diagnosed me [2015] after GP had prescribed NHS funded Armour Thyroid following 2010 diagnosis. I only went back to endo [advertising himself as dealing with akin to 'outliers' like me], due to severely worsening symptoms. Oh, I reply sentence by sentence... it's all recorded.

I have all of this to wade through... lost enough life but little choice than to wade back through it all.

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Can you Pm me with name of that endo.Just interested and would like to avoid. Could you not get youself some NDT, you could then document with more energy and faster thoughts.

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Which region are you in? There's a need to be cautious about naming a B'd ;-)

I've been on T3 alone since Dec 2012 having been told in May 2010 [when taking Armour T] by Dr P [privately] that I'd only do well on that... he's a grand man and knows more about hypothyroidism than half of the NHS put together. He told me where to source it, but I still took Armour when I THOUGHT I needed it... it couldn't have done harm and the T1, T2, T3 and calcitonin may have helped, [albeit very small amounts]; the T4 in it was never required as Levo alone? Who can tell? This is a highly individualised problem for each of us and getting it right - which I have managed a few times - is not always simple.

I still have some Armour actually and was about to start taking some regularly again when, in Jan 2017, my GP stopped it after years of prescribing due to that 2015 endo. I could get hold of... but it's clearly something else behind the thyroid issue.

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I am in Bristol. I can understand your concern.I am also on a right mix. Needing thyrogold for mybrain, t3 for muscle tone and naturthyroid to help me lose weight.Need a compound pharmacist really. also on NAX

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Well then, the doc I'm talking about is in the N East, so you won't encounter him - lucky you!! Compounding pharmacists exist in the US, not sure about here - but it would be great if they did! Yeah, I take NAX also. Look after yourself. x

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There is a compounding pharmacy in Northumberland. PM me for the address.

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If it is a proper pharmacy which requires prescriptions, then it is fine to mention it by name.

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I may need to consult an endocrinologist in either Durham or Newcastle, I live in Co Durham. Would you mind sharing who you saw please, so I can avoid him!

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Newc and Teesside... hmm :-(

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Are you aware that it was the British Thyroid Association who decided that NDT be withdrawn and it was prescribed for years and years. One our our Advisers (deceased) wrote the following and he sent three yearly reminders for a response before his accidental death.

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

They never did so that's why we are in the state we are in:-

Withdrawn NDT - original lifesaver since 1892 and provides all of the hormones a healthy gland would produce. Then T3 without warning.

How much money has Big Pharma given to doctors and Associations worldwide so that levo became the biggest success plus, of course, the extra prescriptions we're given for remaining or new clinical symptoms.

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Oh yes shaws, I certainly am well aware - I replied to this a few days back but it was too long - just to let you know that I get how dreadful this is. :-( x

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Pretty darn good Diogenes! That really does spell it all out. I am going to print off a few copies and send them do my docs and ex-docs. Thank you.

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Thank you for this diogenes I'm sure this is going to be very helpful to a awful lot of people. You may have to keep reposting it! Tagging a few people in who I know will be interested in seeing this. linda96 Kitti1 Katepots lidoplace

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Absolutely brilliant! GP & Endo getting copies! Thank you very much indeed.

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This and the paper on the link are incredibly useful resources. Thank you so much!

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Thanks so much diogenes. Very helpful. And the article you posted at the end was also superb: Front. Endocrinol., 22 December 2017 | doi.org/10.3389/fendo.2017....

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Thank you!

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Massively grateful to you for your superb post. Definitely one to print off. Thank you SO much!

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Inspiring. Thankyou so much.

How long did it take to research and produce this document?

My thoughts -

1. I must do more research.

2. Rearrange my diary to make a space.

3. I will use this tool thankyou so much.

4. Reminders for me -

The importance of new research

Awareness of T3

We are all individuals

Take the measurements at the correct times

Start from a measurement when healthy

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NG18, Check out diogenes previous posts healthunlocked.com/user/dio...

And his short bio (Dr John Midgley) on Thyroid UK website. thyroiduk.org/tuk/About_Us/...

You will see he has been heavily involved in thyroid research for many, many years.

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My sincere thanks diogenes, I think I’d like this attached to my health and care power of attorney. So very timely for me.

Is the link to a peer- reviewed journal ?

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This input is for those patients who have "passed the Rubicon" of needing treatment, which they are now getting even if it is currently not optimal. For those who are "at the banks of the Rubicon" waiting to see if their initial diagnosis is treatable hypothyroidism or not, and haven't yet started treatment, the situation is different and not really addressed here. When to start treatment and what will trigger it? This is another matter altogether, and needs another post which I'll try to put forward. It is much more difficult even than controlling therapy. There is a dilemma not just what a TSH value about 2.5 but still in the healthy range actually means, but when to begin treatment when TSH rises above 4.5 the top of the healthy range. Using an arbitrary cutoff of 10 is merely a statistical trick to minimise fruitless diagnosing and treatment of subclinical hypos but of course draws in true hypos in doing so.It comes down to patient presentation rather than pure biochemistry.

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Excellent, most helpful piece - thank you!

Treated hypothyroid since Feb 2010. Not diagnosed with TSH of 2.8 in 2008, neither at 3.8 in 2009, albeit with a sizeable and growing list of signs/symptoms which were ignored. Finally diagnosed by Dr S via bloods, medical history + physical exam in Feb 2010. Levo initially worked great, then within a short time I became 'toxic'. Treated for 2.5 yrs on Armour Thyroid [eventually funded from 2011/12 by NHS until 2017], then, as long advised by Dr P, using T3 alone from Dec 2012.

January 2015: dreadful symptoms [freezing temps, punch-drunk, fatigue beyond anything previously experienced, etc] led me back to endocrinology. NHS endo, advertising himself to work with patients outside of the usual parameters, who had been provided in advance with relevant, helpful info on my 'Health History', decided to 'un-diagnose' me, saying I had never been hypothyroid all along. Every other doctor from that point has believed his nonsense, and there are no M H issues involved - goodness help those where there are!

That single foul act has, ever since, impacted any other health issue requiring a consultation. I won't leave this alone, but time and illness[es] march on. I am living akin to the Middle Ages yet with no Renaissance in sight!

Thank you - veritable 'Rose in a dung heap'. xox

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This document may not be read by many of our medics, or many will not be ready for it, but just to have access to it is already empowering. I intend to request having it added to my records, and memorize the points for my next confrontation. Boy, am I glad I have a record of regular private lab results showing the difference between t4 monotherapy and combination therapy. And lucky, as not all can afford even the baseline. I'm still excited. Thank you so much.

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Any chance of adding something about about broken pituitary/hypothalamus for us central hypos? No doctor seems to get that at all (or even read the notes and remember that that's the problem)

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Thank you-fantastic post inspiring me to keep going in my quest for better Hashimoto health.I am 69 in January.Diagnosed 1998 but have no idea how long I was underactive,as I was not diagnosed on symptoms but when hospitalised for a virus & probably during a flare.

I have had so many arrogant closed-minded reactions from GPs & endos,I don't think this would be read past the first 3 lines.There is such a problem with status & feeling this position of power being threatened.

However,this is truly empowering for me,as I know your professional knowledge & experience,coupled with your personal experience are priceless to us.

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This is exceptionally helpful and I'm really grateful you shared it. Yet again, getting notifications of all your posts on this forum has been proved well worth it! Thanks for all your work in the field.

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Thank you, Diogenes. This is an excellent summation of the issues most of us here face. As Angel said further up, perhaps a mention could be made of central hypo, and also resistance syndromes.

Even though your piece is admirably succinct, I suspect most GPs will refuse to read even this. Patients can insist that a copy in letter form is placed on thier records, then no excuse of ignorance can be claimed by the treating Dr in future.

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Thank you for this diogenes, I hope many medics will take their heads out of the sand and stick their egos in there instead...then give your words the attention and respect they deserve

I've been giving regular written updates to my GP detailing my personal thyroid/T3 journey over the last year. Be assured readers doctors do sometimes take note of documents handed to them

My current GP admits her lack of (thyroid) knowledge and understands my decision to self-test and self-medicate, but has her hands tied behind her back by those in high places and can do little more than watch from the sidelines.

Only a few weeks ago I first caught sight of my original thyroid blood test results - which I requested about 20 years ago - and with the knowledge I've gained since then could see why I felt so ill. Poor conversion. That GP told me the "little white pill" (LT4) would make me well again. It did not!

To my current GPs surprise (and mine) I launched into an analysis as to why this was so. She is an excellent doctor and I have huge respect for her but I needed more than she could offer.

At age 72 I had reached the stage where I could barely function and with only diagnoses of Fibromyalgia and Chronic Fatigue (my symptoms first appeared about 50 years ago) I knew the choice was to end up sitting in a corner or to start researching in earnest - despite the brain fog!

Clearly I'm not going to bore you with 50 years of my life story but suffice to say that I found the life- changing TUK, read a lot and learned a great deal and now understand why I became so ill.

I first titrated T3/T4 with little success, had the genetic test and found I had inherited the DIO2 polymorphism from both parents (according to Panicker et al, a double whammy!) T4 had to go!

I have titrated T3-only for the last 3 months and am slowly beginning to function again - brain is sharper, BP and BHR have dropped, basal temperature is rising and cholesterol level is now normal.

Ok so far....except that my source of T3 currently has no stock left....who knows if that will change, and since I hold little hope of the NHS coming to the rescue I may be heading back to square one.

I'm in Scotland and have just sent a detailed letter to the relevant Cabinet Secretary though I hold little hope that that will do more than gather dust.

This is a crisis waiting to erupt but sadly no matter how vital it is to those of us involved it is not the only crisis screaming for attention right now.

Your hugely helpful document will hopefully see patients achieve a proper diagnosis, particularly helpful if a prescription of Levothyroxine is what they need to restore well being.

My concern is that despite the obvious necessity some patients have for T3 this will not be prescribed, no matter how many fine words are shouted from rooftops, until much changes - the price drops and medics understand its importance and use.

Patients are up against the power of politics and finance, not just medics lack of knowledge - how that barrier is broken down remains an issue of monumental proportions.

I wish it were different.

I'm now 73 and very concerned about not only my future and that of others like me, but also very much so for younger people who may like many of us be left to live with this (badly treated) condition for decades.

I have learned so much from your writings and contributions.... we all owe you an enormous debt of gratitude.

Best...

DD

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What you have put here is what I have been saying for a long time I am like you getting on in years and I am getting worse I am not getting any where with them to get me better it looks like they are not allowed to do it because of the cost of T3+.I have been told not to come with my symptoms.

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Morning Fedup5. So sorry you are getting nowhere with docs - you should not have been told not to come back. In general, their knowledge of thyroid function is very poor

That doctor clearly had no idea and feared losing face! Can you see another doctor, request an appointment with an endocrinologist or do as I did...have a private test post the results here and you will be given reliable advice.

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

Good luck

DD

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Wow! I am so excited. Thank you very much.

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Many Many Thanks for this, and for taking the time and effort to put it together for us here.

Sheenah xx

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Thank you for the notes, although I doubt very much if any UK GP would have the gumption to read, let alone inwardly digest the notes written in plain English for them. My GP failed me for 10-12 years and continues to stuff T4 only prescriptions in my face...there is NO going forward with them despite everyone's best efforts

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I don't for a moment think many GPs will respond or even understand, let alone endocrinologists. The idea is the simple one: from little acorns, mighty oak trees grow. Spreading the message is always worthwhile no matter how much stony ground there is. I don't believe every patch is sterile, and if things take root somewhere there's always the likelihood of it spreading.

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We live in hope. 🤞

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Send it to my GP? I've just sent it to myself!!

Thank you so much for taking the time to write this. I need to read it carefully, then decide what from it to use when I next write to my GP. My own submission to her will be complex, but there is definitely a LOT of what you have written (far batter than I could have) that will be pertinent and invaluable.

Thanks again.

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Brilliant, but I too found it rather long. Though that could be the usual hypo concentration problems.

Is it possible to make it shorter and simpler without losing any essentials?

I was always hopeless at precis in school English lessons, but a friend told me she was even worse - she would end up with MORE words instead of fewer!!!

But surely someone can help? Many Doctors seem to need something that a bright 10 year old can understand before they are willing to read it!

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The idea for patients is not necessarily to use this verbatim but to use the bits they find helpful and put them in their own words, with their particular experience. Patient-doctor relations are personal and delivery has to respect what you think about your doctor.

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Great, thank you. That I can manage! :-) That explains why my first reaction was "I can't say all that!"

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So it's OK to copy it onto a Word document and edit it to suit. Wonderful!

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Thank you for taking the time to write all this I fear doctors will just as always ask me where I read this and they are the trained medical individuals not me , I’m not sure my T3 was ever tested but I’ll hold court on that until I return to doc for repeat bloods next week and ask for all my previous tests , I have told Endo and GPnanout the fatigue, brain fog and constipation and not once was I told these are all side effects of hashis , It was actually mentioned that I see a gastroenterologist regarding the bloating and that the tiredness was from stress and menopause!

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OK , you can tell 'em that the author is the inventor of the FT4 and FT3 tests doctors do (or do not) use, and his wife ran the first TSH test for hospital use in the UK and also developed a TSH test of present day sensitivity several years later in another lab. He is also the author and coauthor of 70 or so papers regarding thyroid testing and function, and is presently still active in the field with a consortium of collaborators, developing a completely new way of looking at thyroid function and testing strategies and the meaning and validity of clinical trials. Now if that isn't good enough, let me k now.

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Thank you Diogenes I’m fairly new to this group and I don’t know who’s who so thank you for explaining your in-depth knowledge and your speedy response

I joined this group as I felt private endo was fobbing me off re bloating & constipation to a gastroenterologist when in fact she should have armed me with these side effects that everyone else in this group seem well aware of but not the medical profession

After my last bloods in May GP ..said all was normal but to take folic acid yet endo kindly replied 5 mths later stating my TPO antibodies were high and I had an auto immune disease and upped my eltroxin to 125mg twice a week and 100mg 5 times a week , I just want to add these were the same blood tests, the reason I did not contact endo for results was because she had referred me back to GP to have them done , so when GP called me I presumed all was in normal range ...how come 2 doctors can differ over same bloods Is crazy and that was the reason I opted to pay privately to see endo to get more answers it’s like going around in circles !

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They let us do that and keep us going around in circles. I have had a GP send me for a blood test and not take any notice of what the labs. had put in it for themselves to read and I have not been able to get any where it was not okay but I was told it was normal.Thats when I got my 1sts printout was told it’s normal as they were giving me it then I found out it was not. This was 4 years ago and another pretcis. So I am not with them GPS now but I am still going around in circles my thyroid level is not okay and I am not getting any better has time is pasting, these GPS don’t want to know what I am saying about my thyroid symptoms I am told don’t go there and don’t come with your symptoms they are not being helpful they don’t know what to do they have got their hands tied from above I think I am getting on in years. I just want to be able to get around in my house now I am having trouble breathing and I am in bed is this all okay for GPS and them above.

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Even if as many posters say doctors won't read it or may dismiss it there is a lot to be said for insisting documentation you provide be inserted in your chart. It's presence may not help with a particular caregiver but who knows? Somewhere down the road our written words may help us in ways we can't see right now.

In my experience appropriate documents sometimes turn up at unexpected times to help us.

Thanks again. irina

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You've written an excellent piece, but I feel this will only get your average male doctors' back up even if he actually reads it and doesn't consign it to his waste basket. I've always found people with God complexes take an exception to being told their job. It's a shame that we have to tell them their job, but they have the power and prescription pad.

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And that I have to agree with sadly . I was asked by an endo recently why my doctor left me for a year with a high tsh 3.50 when a previous endo had confirmed I was fine on my previous dose and a tsh of 0.86.her words were that she wanted to see how I would be on the dose she recommend . The silence was deafening 😢

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That's appalling, and judging by this forum by no means unique. If only more men were affected by thyroidism maybe the medical profession would take more notice, although the amount of guys dying of prostrate cancer, it's unlikely. Even some private endos can be underhand. When it was obvious to me thyroxine would never work for me I booked an appt, with a private endo who assured me he would provide a prescription for lio. Then he refused to, so I didn't pay him haha.

Always found Dutch docs are the best.

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"She wanted to see how you would be"? Well, lovely, suppose she gives you 3 months' of her salary because you want to see how she manages without it?

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😂😂😂😂. I did put a complaint in to the surgery but as she is still there I just make sure I see another doctor now. I have suffered because of her ignorance as my ted reoccurred and I have been on steroids and immune suppressants ever since to try to control it. 😢

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👍

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What can I say but "thank you".

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I think it's very well written and shows a level of medical self awareness that a responsible doctor would appreciate. I believe my doctor and I are partners in my health management. But if I gave that to a doctor in France, the response would be: surprise and somewhat suspicious (am I neurotic, obsessed with my health...) | I'd be asked if I am a doctor (sarcastic) | doctor would not read it. If a doctor doesn't want to listen to me, as I listen to them, I find another doctor.

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My sentiments. He/she works for me.

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Great idea now if only my endo will read it or allow me to read it to him; without holding a gun to his head.

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Thank you so much diogenes. I just saw the post and realize it could be also used with other specialists with some word substitutions. You must have put a lot of work in the letter.

What jumped out at me is that if I wrote a similar letter I would probably offend the doctor in some way trying to get my points across. Your writing is gracious and even the most recalcitrant doctor could not feel threatened by a knowledgable patient.

Thanks again. irina

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Too clever for most

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