First steps in thyroid diagnosis/treatment

[diogenes]

Additionally to my attempts regarding therapy, I've tried to make a corresponding document for the beginning of diagnosis and treatment. Comments are invited as to hether this provides anyhing useful patients can use.

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, TSH alone is used initially to detect the onset of hypothyroidism. That this test is highly sensitive is not denied, but the interpretation of the test is highly controversial. An important part of this is a decision when, and at what TSH level, therapy by oral thyroid hormone is indicated. In this regard I put the following points to you:

1)The reference range for healthy subjects is generally accepted at 0.5-4 mIU/L. However unlike the symmetrical distribution of values for free thyroxine (FT4) and free triiodothyronine (FT3), the distribution of so-called healthy values for TSH is severely skewed towards the upper end of the scale, so that relatively few patients deemed euthyroid have TSH values above 2.5 mIU/L. TSH values above the top of the reference range up to 10 mIU/L are assigned to subclinical hypothyroid subjects not at the time requiring medication.

2)Individuals maintain health through unique combinations of TSH, FT4 and FT3 applicable only to them. But we do not know what these are, because they have never been measured in health. Therefore, when thyroid disease strikes, it usually does so surreptitiously with only a gradual progressive change to overt hypothyroidism requiring treatment. Because of my individual makeup of thyroid hormones, the point at which indications of a thyroid under strain, but not yet obviously compromised, move to an overt state requiring treatment will be unique to me. However as I said, the start point from health is not known. Therefore diagnosis by “shoehorning” TSH values into categories defined by ranges is not correct. It assumes that everyone will respond equivalently within that range, and that decisions to treat or not can be made purely on statistical, rather than on personal, grounds

3)Diagnosing purely by TSH has to take account of a) my particular makeup as regards thyroid function and b) the symptoms I am displaying:

4)hair loss/limpness, loss of outer part of eyebrows, thickening facial skin, feeling cold, sluggish- THESE ARE JUST EXAMPLES –USE YOUR OWN HERE.

5)A TSH above the reference range but below 10 mIU/L therefore can have many meanings. For some individuals, given obvious symptoms of hypothyroidism, it can strongly indicate the need for treatment. For others with exactly the same value, it may not require treatment at present. However the magic number of 10 mIU/L should not be used as a decision point as to whether to treat or not. There cannot be a hard and fast cutoff point for treatment given patient individuality.

6)Are there any useful blood test pointers that can aid in deciding whether to treat or not that are independent of thyroid function tests? One useful test is blood cholesterol and triglycerides. If hypothyroidism is significant, then these will be raised. On treatment with thyroxine, the levels should fall back to lower values if the treatment is appropriate. Thyroid antibody tests should also deermine whether or not I have autoimmune thyroiditis.

7)I realise that deciding the point when and how to treat hypothyroidism is a difficult area, but decisions based on hard dividing lines cannot be the best way forward given patient individuality. The patient’s presentation is at least as important as biochemical numbers. The recently defined category of subclinical hypothyroidism (i.e. not requiring treatment) has been a retrograde step in diagnosis, as it has consigned individuality in disease progress into a statistically defined mass-based decision

.

8)It may possibly be that I display hypothyroid symptoms, when TSH is still within its reference range. In which case, FT4 should be measured to see if it is very low within this range or even below. If this turns out to be the case, it may be that I am suffering from central hypothyroidism (pituitary insufficiency rather than thyroid disease).

9) If in the event, treatment with T4 is indicated, 50 ug should be a starter doses (omit this if over 65 years). When treatment is begun, FT3 should be used as a determinant of successful treatment, realising that neither TSH nor FT4 are adequate in this regard.

10) I hope by combining presentation with biochemical measurements in a considered and personal way, treatment can be begun in a timely way. A problem with delaying treatment is that irreversible changes in the thyroid axis can occur which will be difficult to reverse in the future. This is another dilemma whose implications we should discuss together.

[megarub]

Excellent.

It gets the partnership and collegiate nature of what should be a good medical consultation.

Para 2 nails the *individual* nature of thyroid health.

Para 6 – yes – naming and linking the cholesterol issue with hypothyroidism is crucial. And anti-bodies.

I and many others have been threatened and cajoled into the being force-fed statins [as well as being told we’re old/lazy/lack-will-power/fill-in-other-medical-fob-offs because we gain weight as thyroid function fails.

Para 7 – people using this in a medical consultation - retain the individuality here -talk ‘me’, ‘I’.

Somewhere – can the importance of FT3 to thyroid and individual health be expanded a bit – just another sentence? GPs – many or most – just don’t get this.

[Lulu2red in reply to megarub]

Patients should check their own medical records to see if they have had thyroid screening in the past. It may have been done without the patient being aware. If this was done when in full health it would be worth it's weight in gold as a measure of where you need to end up.

[greygoose]

This is another dilemma whose implications we should discuss together.

How many GPs - or even endos - do you think are capable of discussing this in any intelligent, meaningful way? Very few, in my experience.

[diogenes Remembering in reply to greygoose]

Even if a few take it seriously, that's better than none.

[greygoose in reply to diogenes]

That's true. But not much comfort if your particular GP is not capable.

[TSH110]

Would a global perspective on TSH be worth mentioning given uk is right out of line with at what TSH to start treatment or would that just rile them given they are prisoners of our preposterous treatment guidelines

[AliF]

Can you explain a little more about the thyroid axis and the problems in delaying treatment please ?

[Rosannaclare]

This was hugely helpful for me! I'm just starting the road to hopefully begin treatment, but at the moment according to TSH (the only test they'll do) I'm subclinical. I also found your point 'One useful test is blood cholesterol and triglycerides. If hypothyroidism is significant, then these will be raised' interesting - that's also something visible in my tests so it'll be interesting to see how my doctor responds. Thanks so much for writing this, it really makes a difference when you're exhausted and the thought of trying to pull all your collected research into a letter which the doctor will pay attention to seems an impossible task.

[Tina_Maria]

I think this is a great document and very useful for patients, especially when they are not feeling well and would perhaps not be able to voice these concerns. It is difficult to make yourself understood, especially if you have symptoms which impair your concentration abilities.

In addition to raised triglycerides and cholesterol, glucose levels can also be increased in addition to feeling low in mood or depressed, all of which will correct themselves with the right treatment - as we have plenty of examples on this forum. Thanks for putting this together!

[penny in reply to Tina_Maria]

Probably offer you a statin.

[Musicmonkey]

Excellent. I have Secondary Hypothyroidism which doctors seem to overlook and don't understand. This makes it really simple to understand.

As I am nearing 65, will I need to consider a reduced dose?

What about conversion issues? Can this be included?

[diogenes Remembering in reply to Musicmonkey]

I don't think reducing dosage is advisable if feeling well on what you take. Conversion issues are included in my other post on control of existing treatment.

[greygoose]

Yes, you're absolutely right. Not only would they not be capable of discussing the implications of this dilemma, they wouldn't even want to, because they have to be right - even when they're wrong.

[diogenes Remembering in reply to greygoose]

I've got a whole panoply of heroes in medicine, genes, and biochemistry: researchers vilified and derided for their discoveries who ultimately were shown to be right, and the dissenters just melted away. 1) Peter Mitchell who showed how mitochondria in cells actually work, describing a process that was simply derided for years as fanciful: 2) Marshall & Warren who showed that stomach ulcers were caused by Helicobacter pylori, against all belief (Warren made himself ill by swallowing the bugs to prove his point); 3) Barbara McLintock who spent decades lonely in a rundown lab in the US slowly proving that genes can jump about and distribute themselves differenly through generations. There are lots more. Just because no-one believes does NOT mean things cannot and will not change. So in my examples, so here. Anyone with any integrity who discovers something which is at odds with current thinking is duty bound to hold to their beliefs and to proclaim them no matter what. That you personally might not see the final outcome and acceptance is neither here nor there: it is he facts that will ultimately triumph over any amount of prejudice. I have no patience with defeatism!

[greygoose in reply to diogenes]

Are you calling me a defeatist? My motto has always been 'have the courage of your convictions'. And I live by that - otherwise, I wouldn't be here. I don't think I said anything about giving up, did I?

[Mamapea1 in reply to greygoose]

No GG ~ I believe that was me! However, I have only given up presenting the information to medics, as I am tired of being ridiculed, whilst my health worsens. I have not, and will not, ever give up on searching for answers for improved health.

I have queried their staid opinions for 26 years, and have got nowhere. I too have a long list of medical 'heroes' and there is no doubt that wonderful discoveries and improvements to healthcare have been made, by long suffering researchers...sadly many of them remain discredited, or ridiculed.

However, my problems are related to thyroid, and yes, I would like to see some sort of breakdown in the system that is preventing us getting appropriate treatment, and many other things.

That does not mean I am defeatist, quite the opposite, and I too am most eager to see the facts triumph over prejudice...in many areas of healthcare.

Unfortunately, I cannot afford to go private, and so I am reliant on NHS guidelines and the ill health they create for me, which is why I now have to go it alone, like many on here. I am getting old, and I've lost enough of my life to this ~ how many more years can I spend trying to convince Drs? I'm just being realistic. x

[greygoose in reply to Mamapea1]

Yes, I know what you mean. I don't think we get defeatists on here. Sometimes we get people at the end of their tether, but the very fact that they post on here means that they are not giving up, just giving in to a passing moment of weakness - and who can blame them! I think it's terrible to accuse anyone of being a defeatist on a thyroid forum. Shows a complete lack of understanding of human nature.

[diogenes Remembering in reply to greygoose]

No but the tenor of recent posts doesn't give me confidence in feeling that what I put out is taken in a positive way - obstacles take precedence over possibilities.

[greygoose in reply to diogenes]

Yes, I can understand that. But, you make it all sound so easy, like you don't know how difficult it is, like one has an intelligent conversation with a doctor every day. And, it's just not like that. You can't have any sort of conversation with some doctors. And it's a bit unrealistic to suggest that we try and talk to them as if they were equals, because most of them think they're so superior! They know it all and you're just a silly female who exaggerates and imagines her symptoms.

It's great to educate people, it's very necessary, and you're doing a great job of that. But that's only half the problem. These doctors can be so awful, so intimidating, it takes a very brave person to even bring the subject up - especially if you're female. But, that doesn't mean we're quitters. We survive the best way we can. And you are diminishing all our efforts by calling us defeatist? That is so insulting.

[Mamapea1 in reply to diogenes]

Oh no, diogenes ~ what you put out is always taken in a positive way ~ we need all the help we can get! Unfortunately, most Drs do remain resistant to change, and continue to prescribe/treat according to their mistaken beliefs, despite any evidence to the contrary.

This makes us even more reliant on information from yourself and others to enable us to self treat or find alternative Drs while we await the elusive changes. Without this outside knowledge we would be lost ~ we can't spread the word and fight the system if we're dead😳.

I for one appreciate all your efforts, and hopefully not all of us will hit a brick wall, and a few more open minded Drs will sit up and take notice. The obstacles are not of our making, but are nevertheless present.

Thank you, as always, for posting.🌻🐝

[Mamapea1]

I too have given up presenting GP and 'specialists' with info/studies in an effort to get appropriate treatment, especially in the last 18 months since finding so much of it on this forum. After starting on T3, and having so many improvements after decades of ill health on large doses of T4, they are still insisting I go back on it. They are also STILL requesting I have the annual flu jab ~ they just don't listen.

It's all very well airing these findings in public, but if the 'powers that be' still refuse to listen/accept them, then we're still on our own. Corruption is indeed across the board. x

[greygoose]

Exactly.