Thyroid UK

Research on the internet. So now the RCP has decided we should research our symptoms on the internet before we go and to see the GP

Today's headlines: I am now thoroughly confused! One minute they (GP's) don't like it if we go in to the surgery and tell them what we think our problem is. Now the Royal College of Physicians has decided we can ease pressure on GP appointments by researching our symptoms on the internet before our appointment!

I think I will cut the article out of the paper and keep it with me when ever I go to the surgery, which is about once a year for me! Pharmacists are no doubt delighted by the advice that they should be our first port of call rather than GP! Article is in Telegraph

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crimple,

I think this is the story:

telegraph.co.uk/news/2017/1...

:-)

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Thanks for posting the item. maybe this is the year I will learn how to do it. That's if I have time after all the hours surfing the net to diagnose my health issues!

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Thanks for posting, crimple.

Is this another argument for universal decent broadband speed? Our health relies on it!

The advice to ask pharmacists seems to be issued without appreciating the realities of the world. Most times I go to a pharmacy, the actual pharmacist is busy preparing prescriptions - often for other patients who are waiting. How many of them would really appreciate being made front-line diagnostic staff and making everyone else wait even longer? Anything that requires a test (blood, urine, blood pressure, temperature, etc.), imaging (x-ray, CT, MRI, ultrasound), viewing of the body (beyond eyes and hands), etc., will simply result in the directive "Go to your GP/A&E".

GP surgeries could have their burden lightened by allowing pharmacies to sell/supply some medicines OTC - like, perhaps, levothyroxine and liothyronine! After all, there were 219 deaths from paracetamol in 2016 [1] and that is General Sales List so available on supermarket shelves. How many from thyroid hormone? Whereas the system has been pushing to 28-day prescribing meaning a minimum of 12 interactions with surgeries a year just for that!

[1] ons.gov.uk/peoplepopulation...

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When I was diagnosed with hypo in the late 1980s (after years of illness) my levo prescriptions were issued quarterly. They were only issued more frequently if endo or GP changed the dose. Surely many long term medications could safely be issued on a quarterly basis?

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Hillwoman,

I cannot see any reason for them to be issued at a greater frequency than blood tests are done. So, for many of us, annually. There is a system (or was?) which allowed the doctor to do their bit once a year and then the patient go and call down their next issue regularly.

I strongly suspect that pharmacies want shortest possible period prescribing to maximise their income. However, I don't know the ins and outs of pharmacy finances so have never been 100% sure.

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Helvella, please don't think I'm being picky. I know you have put "minimum of 12" but 28-day prescribing means an actual (not theoretical) 13 interactions. We have at least one member having problems with this regime.

Sorry, previous life - prefer to be accurate on this one.

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crabapple,

You are quite right to pick that up - yes it has caused issues. It is ridiculous and scandalous.

In my defence, if you had your first one on 27/01/2018, then you wouldn't actually hit your thirteenth until 29/12/2018. Just having a few tablets in hand could allow that to be deferred to 01/01/2019 or very shortly after. (Yes - I have ignored public holidays and weekends!) :-) :-) :-)

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I'll give you that one.

However newbies do not always know they will need to have some in reserve. I think it is easier to do when your dosage is being adjusted and if you are prescribed 56 days at a time.

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Well, considering that the guidelines in the UK are that no-one should be diagnosed until the TSH is 10 and professionals don't know any clinical symptoms, the undiagnosed hypo patients will continue to flounder.

How many of our members have gone more than once to GP and told there's nothing wrong or given anti-d's as they attend the surgery too often looking for answers.

When they post their latest blood test results on here, many are actually hypothyroid due to the tests and doctors disregard both it and clinical symptoms.

How many diagnoses was I given along with treatment for things I didn't have - quite a number.

Maybe it would be a very good idea if we could also be provided with our own Prescriptions and blood tests (and choice of hormone replacement) and we will get better far sooner.

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Well said Shaws!!! Xx

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Well said Shaws and as regards anti d's, I think it was yesterday's news reported anti depression scrips have gone up by 50 % in last 15 years. I wonder how many of those scrips were for undiagnosed hypo patients?

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crimple,

From the same source I quoted earlier, "anti-depressants" were mentioned on 460 death certificates in 2016 - more than any other identified "drug" except Heroin and/or morphine. About 12% of all drug-related deaths.

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That is shocking, but shouldn't surprise us. The drugs barons (big Pharma) have taken over from Harold Shipman.

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Harold Shipman haha but it’s soo true!!

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My go told me not to believe internet . If I hadn't of searched it . I would of believed my all symptoms were my age HRTand finromagelia. To search the internet has given me life bAck. If I was left to the GPs advice and their diagnosis I would not of finally got the correct diagnosis and treatment. The GPs seem to know little and not enough of much these days some are good some are useless especially about thyroid . I don't lile the way they. Blame fibromagelia and ME, when they don't really bother to investigate seems they have. That instead of telling us to goaway and shut up.. I bet some GPs won't like us knowing more than they do lol

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It does recommend NHS Choices so limits the search .

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Treepie,

It actually says:

use NHS Choices or similar reputable websites/resources

rcgp.org.uk/news/2017/decem...

With absolutely zero guidance on how to locate or identify those that are reputable as against those that are not. How many are actually associated with major companies (even if they have a declared neutral policy)?

NHS Choices could be so very much better if their feedback mechanism took account of published criticisms and suggestions. As it is, it suffers exactly the same as so many sites - not making changes even when they have been shown to be needed.

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Ah,read quickly and missed the "like" in the telegraph report.Still folk are often told on this site to quote NH?s Chioces at their GP when gaining information from the forum. So may help a little.

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I told my GP that I was visiting the Thyroid UK site to learn about hypothyroidism. I thought he would be pleased. Quite the opposite. He said that the forum is “full of crackpots” who “spout garbage.” He finished off by saying that most of the people in the forum are “mentally ill.”

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your GP is frightened they will be found out, i.e. how appalling their ignorance is about thyroid related issues. D0es he prescribe anti d's at the drop of a hat?

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Geez another brain washed GP who uses mentally ill as an insult to patients that have been let down by the system. Given that they use few valid and reliable objective tests for mental illness they appear to believe their prejudiced view that mental ill health is rife. But strangely only warrants antidressants and the ubiquitous CBT 😡🤬. Perhaps more people should demand psych referral before this is allowed on the notes.

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Archway,

Many of us might be crackpots.

Many of us might spout garbage.

Many of us might be mentally ill.

We are all individuals and entitled to our crackpottedness.

At least some of the garbage spouted occurs when people quote establishment medical sources.

Our mental health seems all too often to be negatively affected by inappropriate diagnosis and treatment of thyroid issues. However his sweeping powers of diagnosis (of at least a decently representative sample of members, I assume) should ensure that those affected all urgently receive their needed treatments. Quite an astonishing achievement in the difficult area of mental health by a mere general practitioner.

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Thyroid UK is the recommended NHS thyroid support group

Sounds like an enlightened and open minded GP (not)

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Indeed SlowDragon. I'm going to see another GP in future.

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Hi Archway

What an ignorant fool. They do not want to help us but they do not want anyone else to either and expose them !!!! ⭐️

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Spout garbage? Listening to him is like letting the trash-man guard the hen house, lol.

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My GP warned me that on-line sources were full of ranty-shouty Doctor-haters. I'm sure I mentioned Thyroid UK but woudn't swear to it since it was a while ago.

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Archway,

Some GPs are crackpots, spout garbage and are mentally ill and some are incompetent too. I wonder which category your GP falls into?

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Dr Google! What's next.. self treat?. Save NHS money...😖

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Well, since early October 2017 I have magically and wonderfully returned to really good health after a 36 year battle. Without the internet and this AMAZING forum, I would either be dead or incarcerated within walls in a straight jacket. I think 3 months of feeling great can't be a flook. Thank you God for the internet and kind people.

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But I have it in writing from my endocrinologist that it's not a good idea: "She does a lot of reading and sometimes that can be detrimental in my view as she probably personalises some of the internet search readings."

Surely I can trust the words of an endo, hmm?!

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ShinyB NOT. I would suggest you tell your endo that until and unless she heals you back to normality, she can take a running jump. The last two times I saw an endo (on NHS) I was assertive, confident, knew my facts inside out, and asked her vital questions regarding my health. Boy oh boy, she did as I asked (ie prescribed 6 months of T3) and she was not a happy bunny.

The only problem is that unless we have our brains working, have read & researched for hundreds of hours, we are not fully armed to take on an endo. Best to take someone with you to every appointment so they can coerce, question and listen to that endo / GP

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There was just the hint of sarcasm in my comment... ;-)

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Apologies.... There's more than 'just a hint of sarcasm' in me now. x

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To be honest, I don't have the energy to fight the endo. I've already been 'fighting' the lipids consultant - who finally agreed I did not have familial hypercholesterolaemia but still wants me to go on statins which I won't do. I'm worn out, have minimal concentration, and am competely foggy headed. I swear I feel more foggy headed for increasing my levo dose! I went in, with my husband, to see what I could get from the appointment (thyroid scan in January so pleased about that, plus a re-test and Cortisol and DHEA test). Once I start feeling a bit better, I may well go for the endo jugular, but just not up to it at the moment. I find it so infuriating not to be able to take in information, it's doing me in! :'( And breathe.... How have you been doing? x

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To be very honest, I have fought and fought for decades; got me absolutely zilch, zero. They are ignorant, idle, hypocrites, on a vast salary. Not worth expending your energy.

If you are on T4 (levo) I personally would recommend you trying T3 or NDT. I personally upped my T3 dose until I felt well and actually had energy. I can't afford or be bothered to keep doing private blood tests - I'm trusting my own body now. Mind you - my current attitude is following 36 years of horrendous symptoms; so I couldn't give a fig now to be honest. I have/had absolutely nothing to lose as I was constantly suicidal in any case.... just a matter of time following 36 years of shyte from Professors of Endocrinology.

In August I changed my diet : cutting out ALL grains (not just gluten) which I'm certain has healed my gut (however no doubt there will be an outcry on here about this, but it has worked for me); also cutting out as much sugar as possible; and adding in cholesterol. Dr John Bergman did a wonderful youtube video about the thyroid, cholesterol, the spleen, other organs, how they are all interlinked, and why our bodies need cholesterol. They crave cholesterol - the liver makes (or stores?) cholesterol and needs a constant supply. This low or small amount of cholesterol recommended by these idiots is not what our bodies need. I bet they eat cholesterol. This change of the way I eat has healed me anyway.

Above on this post I wrote : "Well, since early October 2017 I have magically and wonderfully returned to really good health after a 36 year battle. Without the internet and this AMAZING forum, I would either be dead or incarcerated within walls in a straight jacket. I think 3 months of feeling great can't be a flook. Thank you God for the internet and kind people.

"

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Yes, I too went grain and sugar free and am a huge advocate of low carb high fat eating. I've added in a few carbs recently though - partly because my nutrition therapist said it would help with lowering my cortisol levels, and partly because I read that a very low carb diet can negatively impact your thyroid levels.

I'm just so disappointed that I'm not feeling any better yet. Since upping my T4 dose, my symptoms have got worse. I'm going to order the D102 test you mentioned, and have got some T3 to try.

So pleased you have good health again! It gives me hope! :D

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Trust an Endo?!? I would say NO after the two I have met!! Xx

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You took your endo's comment about personalizing so personally, lol!

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I'm not bitter............. !! ;-)

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I am. My GP is toast as of Monday Jan 1st. That's as quick as I could change GP's with my insurance :)

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Good on you! Hope the next one is less crumby (see what I did there?!)

As for not being bitter, I am still composing my scathing reply to the endo!

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Maybe the next one will have a crumb of sense? :)

I hope we are going to get to read the buttering of your endo! Ha,ha...

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haha, yes! I have my butter knife at the ready..... :D

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I am most definitely BITTER !!! ShinyB You say you are fighting with a Lipids Consultant, feel worse on a higher dose of Levo. I would honestly recommend you get hold of T3 or NDT, and there's a good chance you can tell your Lipids Consultant to go where the sun don't shine. We get all sorts of various 'other illnesses' when under medicated, because our bodies are fighting so hard to rectify the thyroid stuff going on. I started going down the line of all sorts of other 'illnesses' - eg. pituitary, big muscular problems, etc. It was UNDER medication of my thyroid and I needed T3, not levo (T4). I honestly think it would be money well spent to get the DIO2 test done. I went 15 years on Levo, I saw two psychiatrists, one as an in-patient during that time on Levo. (omg, talk about One Flew over the Cuckoo's Nest !) My brain is working 100% now, and I can understand what happened to my body for 36 years..... I keep crying it's so so sad.

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I've got some T3 lined up (replied above to you, not sure if you saw it) and am definitely looking in to the D102 test. I too have had some Cuckoo's Nest experience as an inpatient, plus a life time of antidepressant meds, a diagnosis of M.E., high cholesterol, on every laxative under the sun lol, and that's just the thyroid related symptoms I can think of off the top of my head! It was actually a psychiatrist who got me put on Levothyroxine.

Did you go over totally to T3 or do you combine it with T4 or NDT? I'm trying to get my head round how to make the change.

I know what you mean about the tears. It's a total waste of living to feel this unnecessarily awful. But we have to focus on being better and looking forward. And helping other so they don't go through the same. You've certainly encouraged me a lot and for that I thank you! :)

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ShinyB,

It is DIO2 - three letters and a number (not a letter and three numbers).

We all understand but if you want to come across knowledgeable to a medic, it is as well to get that right. :-)

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Good point! Thanks :)

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After 15 years on only Levo, I ditched it and since then have only taken T3. It's a very l.o.n.g story how that happened, but only take T3. However, until this summer (2017) I was not on a big enough dose (was on 30mcg a day). All GPs, endos, Professors were absolutely determined that I could not have a higher dose of T3. I've looked through my med notes (paid £50), and all the way through, I was undermedicated since taking only T3. I won't even talk about what my blood test results were on Levo - it was glaringly obvious !! So it is vital you do take enough T3 (or NDT) for your thyroid to recover fully. This stupid business of being scared too much is going to give you a heart attack, give you osteoporosis, etc makes me angry. I was kept ill by them doing that. T3 (and presumably NDT) has a very short 'half life'. If someone takes too much whilst trying to get themselves optimally medicated, then all they need to do is drop back a few mcg.

Hope you can do the DIO2 test very soon. You only have to spit into a phial - very easy! It does take about 3 weeks to get the results after returning it. It's a tense wait. x

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Did you stop your levo dose in one go, or reduce gradually? And did you wait till you were completely off levo before starting T3 or start adding it in as you reduced levo? How long did you leave before dose increases? Sorry for 20 questions!

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I'm so sorry but I honestly can't remember. It was in 1996. I do remember though that my adrenal fatigue had to be treated before I could do anything with the thyroid meds. Have you heard of Dr P being talked about on here? It was him (bless him) who realised just by looking at me that 1. I had possibly the worst adrenal fatigue/exhaustion he had ever seen (said he was surprised I could still stand up); 2. that my body couldn't convert T4 (levo) into T3 the usable thyroid hormone.

He obviously recognised the signs of both of these problems in me just by looking at me. I was absolutely desperate so trusted him. It is the adrenal glands that prop up the poor thyroid whilst the thyroid is low and unmedicated. And therefore the adrenals have to be helped along first. I do remember Dr P prescribing 5mg a day of Cortisone which I think has been discontinued. A form of hydrocortisone? It was a coated version, the Rolls Royce he called it. The 5mg a day was what he called a pharmacological dose - very small and steady; not to flood the adrenals but to slowly and steadily help them to recover. I think he stopped the Cortisone after about 3 months.

So, it's adrenals first, then I'm thinking slowly reduce Levo and slowly add T3 (or NDT) But there must be others here who are more knowledgeable than me... I'm sure I have seen posts &/or replies on this subject.

Sorry I can't remember exactly. Perhaps write a Post to check how to come off Levo and introduce T3. Please do send me a PM if you want some moral support. x

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Thank you :) Yes I was going to book an appointment with Dr P (if it's the same one you mean) but because I'd already paid out a lump sum to consult the nutrition therapist, I'm just going with her for the moment. She's giving me stuff to support my adrenals. I'm not convinced she knows enough about T3 as she wasn't keen on me taking it. She's got me on various supplements, to address cortisol, adrenals, digestion, inflammation etc - and with not feeling any better, in fact feeling worse, I'm coming to the conclusion that my increased Levo and lack of T3 is what is causing it.

Thanks again for your help! x

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crimple,

Their statement includes this sentence:

The College hopes that this simple slogan will encourage patients to think hard about whether they need to see a GP during another busy winter period for general practice – or if they can deal with the problem in a different way.

Hey folks - let us wait six months before asking for our thyroid tests! Or to get a change in dose. Or to discuss the immediate withdrawal of our liothyronine prescription.

Anyone predict what they will say in six months? I predict:

The College hopes that this simple slogan will encourage patients to think hard about whether they need to see a GP during another busy summer holiday period for general practice – or if they can deal with the problem in a different way.

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I am just going to use it as an excuse not to go to surgery for blood test because they are keeping an eye on my TSH (0.05) well below range and are trying to reduce my measly levo dose from 112.5mcg daily to 100 and threaten me with heart attacks etc.

I am going to start some T3, quarter of a 25mcg tablet, as my T4 and T3 are always low in range. (T4 16 (12-22) and T3 4.4 (3.2- 6.8)

If I hear any mention of anti d's (because I am still symptomatic but not as bad as I used to be) I am likely to punch someone!

Think that should cover the requirement to "deal with my problem in a different way" Lol

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crimple,

NHS Choices website has a page for thyroiditis (not exactly surprising):

nhs.uk/conditions/thyroiditis/

What is, perhaps surprising is that within it, they expressly refer to Hashimoto's thyroiditis - a term which so often seems to be avoided in the UK, a veritable elephant in the surgery.

(They don't, though, mention Riedel's, nor Ord's.)

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First time I have ever checked out Hashi's on NHS choices. Perhaps all docs should read a topic each evening until they have educated themselves!

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Some pharmacists maybe, but one I saw for advice last summer was as useless as a wet rag and couldn’t come up with any advice other than if I felt the same in 3 weeks...see a doctor!

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