Thyroid UK wants to run a helpline (trained by ... - Thyroid UK

Thyroid UK

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Thyroid UK wants to run a helpline (trained by us). Why would you use the helpline?

lynmynott profile imagelynmynottPartnerThyroid UK602 Voters
516
If I wanted independent advice about my thyroid condition
460
If I wanted information about my test results
395
If I wanted information about access to T3 or NDT
302
If I wanted information about different brands of levothyroxine
266
Because I am unwell on levothyroxine and wanted some advice
263
If I wanted information about support groups
227
If I was first diagnosed
58
Other (please comment)
106 Replies
Ruby300 profile image
Ruby300

I think it’s a very good idea like myself and lot of people we might what to ask a question or to know something you can’t go and ask your doc at the moment so yer why not hope you be able to do it 👏

janjan22 profile image
janjan22 in reply toRuby300

When I was first diagnosed with Hashimotos back in 1995, there was no Thyroid UK. But a lovely lady ran a helpline from her own house and she gave me such a lot of helpful advice for myself and my late Father, who was also diagnosed, that we wouldn't have survived without her,She became my friend at a time of great need.We still keep in touch.It was helpful to have someone to actually speak to!

Since then I have been on Armour Thyroid for years and discovered that I have the DIO2 gene mutation and Dad must have had it too.

Thank you Thyroid UK and also to the lady who ran the helpline! A telephone helpline would be of great help to people!

Tythrop profile image
Tythrop in reply tojanjan22

How did you find out you had that gene-thing?

janjan22 profile image
janjan22 in reply toTythrop

I took the saliva test with Regenerus Labs. You can see it on their website.

AmandaK profile image
AmandaK

I have had a diagnosis of ME/CFS since 1988 and from all I have read, from the advice given by members on ThyroidUK and from a recent consultation with Dr Sarah Myhill, the thyroid is implicated, yet my TFT test results have always been dismissed by GPs and endocrinology medics as they have always been 'in range'. I wouldn't even be considered as having suboptimal hypothyroidism. Since taking Metavive I, on advice from Dr Myhill, my health has improved.

I would use a telephone helpline given I don't fit into the thyroid 'norm' according to the NHS.

FrostyKnickers profile image
FrostyKnickers in reply toAmandaK

Hardly anyone does and they gaslight us into believing all sorts of nonsense. A helpline would help be useful run by the right people to help people take control of their own health

HRH8591 profile image
HRH8591

Also for any reference books, suitable supplement usage and when and if to stop when having bloods.

Emidjemal profile image
Emidjemal

Just for support and to know that I'm not going mad and that NO its not all in my head and I'm not just a hysterical woman

HowNowWhatNow profile image
HowNowWhatNow in reply toEmidjemal

The same goes for too many medical conditions! “No, you’re not hysterical” is a phone service half of the population needs urgently.

Wendyrmn66 profile image
Wendyrmn66 in reply toEmidjemal

God dont i know this!

SlowDragon profile image
SlowDragonAdministrator

Other information on food intolerances. The importance of coeliac blood test and gluten free diet for many thyroid patients

How to find a thyroid specialist endocrinologist and what bloods to get done BEFORE consultation

Thyrigia profile image
Thyrigia

To feel less isolated with a condition that few, including medical practitioners, seem to understand. Speaking to someone familiar with thyroid issues can improve one’s own knowledge, but also help instil confidence. PS. I would be interested in the training you are offering to helpline operators.

Hennerton profile image
Hennerton

Hi Lyn,

I may be alone in this thought but I would love to know if there are people locally that I could meet for a coffee and chat and I wonder if there is a safe way you could facilitate that. I think this does happen in some parts of the country and some years ago someone was trying to set up a group locally but it came to nothing in the end. Of course we need to be aware of the weird people who may cause harm but it seems a shame to shun meeting people from an online source because of this issue. Do you know of any groups around the country that have succeeded in making this work?

Many years ago when I belonged to the BTF, there was a local group and an endocrinologist from a nearby hospital once came to talk to us. It was this man that gave me my first precious prescription for Liothyronine. Where would I be without him? I saw him privately but I should not have known about him without this group. I then discovered Thyroid U.K. and where would we all be without you? Thank you a million times. Viv

haggisplant profile image
haggisplant in reply toHennerton

I too had excellent advice from the BTF. And know of women who ran btf groups who were on t3 (Newcastle.)

HowNowWhatNow profile image
HowNowWhatNow in reply toHennerton

What a brilliant thing.

I think the BTF have a page on their website to say that they will help people facilitate group meetings like this.

I suggested I do this to a GP in my practice (ie. that I could organise a group for some of their thyroid patients) because I’d read this by the BTF and know that this kind of group community-based medicine is on the up in medical circles - and so cheap to deliver! - but he was not at all interested, which put me off doing more.

Does anyone know of one near them or have links to the BTF?

shaws profile image
shawsAdministrator in reply toHennerton

There are several ways to meet others with a problem with their thyroid gland.

Some members open their homes on a regular basis in their area and kindly invite others to the meeting which may consist of problems with their dose or what they could do to help relieve symptoms as well as getting worries off their shoulders etc.

We can also become members of Thyroiduk.org.uk and the more members the stronger TUK becomes because there are more collective voices which may enable us to change the 'opinions' of those who make the 'rules/regulations' i.e. BTA.

Every few years there is a Conference in a different area which I have found excellent and we meet up with others who live elsewhere. There are also professionals who who give series of talks etc.

HowNowWhatNow profile image
HowNowWhatNow in reply toshaws

Thank you, Shaws! Do you know when the next conference is?

Hennerton profile image
Hennerton in reply toshaws

Thanks, Shaws and yes, I could do that but how do I know whom to invite? There is no list of names and email addresses as far as I am aware, nor should there be. It is a conundrum of technology and life today that we need to be cautious and cannot open ourselves up to possible problems online.

DeeD123 profile image
DeeD123 in reply toHennerton

I’m sure thyroid uk have a list of groups around the country. There is probably one in your area

Hennerton profile image
Hennerton in reply toDeeD123

Thanks but I have never heard anything about groups and they are never mentioned in the news letter, are they?

DeeD123 profile image
DeeD123 in reply toHennerton

Our wales group was was mentioned when Lisa set it up so I’m sure other groups have been. I would email tuk and ask. Are you on Fb. There are so many small groups that have formed around the country. Mainly to fight the t3 scandal but all thyrodites.

RedApple profile image
RedAppleAdministrator in reply toHennerton

Hennerton, various types of support groups have come and gone over the years. You can get information on the current ones via this page on the TUK website: thyroiduk.org/help-and-supp...

shaws profile image
shawsAdministrator in reply toHennerton

I think you can approach Lyn Mynott who started Thyroiduk.org.uk in her gardan shed and am sure she has enabled members to set up various ways to meet up with others who have dysfunctional thyroid glands.,

People are very kind to open up their homes every couple of months and we get a cup of tea and biscuits and have a moan about how things are going on in their thyroid world and might find some helpful information or give information that they themselves found useful.

thyroiduk.org/help-us-to-he...

Catseyes235 profile image
Catseyes235 in reply toHennerton

Yes the BTF and later TED (thyroid eye disease ) members were invaluable. They used to publish or give a synopsis of new research too in their newsletters. I did go to a couple of BTF meetings in someone’s house. It was great to talk through symptoms and feelings with others. I would love to see surgeries/health centres facilitate meetings for specific groups.

Hennerton profile image
Hennerton in reply toCatseyes235

Yes, great idea to be able to meet up in a health centre. Sadly I cannot imagine any doctor or nurse wanting to organize it, mostly because they haven’t a clue how much we all suffer. It’s all sorted with the famous “little white pill” as far as they are concerned.

I have a very good GP but she knows little about thyroid matters, admits it to me and mostly leaves me alone to do as I please. Then I had the horrors last year when she phoned to say I needed to see an endocrinologist about my T3 prescription. My CCG was obviously trying to save money. Fortunately I wrote a long but concise thyroid history, emphasised my need for T3 ( no thyroid ) and by a stroke of luck had a female endocrinologist who happily prescribes T3. She told me she was very annoyed with the CCG for bringing me in to see her and wrote to my GP confirming my need for it. I almost cried with relief. I have added her to Thyroid UK’s good endo list. These gems are hard to find!

Catseyes235 profile image
Catseyes235 in reply toHennerton

Yes there are good endos and doctors. I think this site sometimes gives the impression there are no good medics anywhere which is not great if you were beginning the thyroid trail. NICE has put GPs in an unfortunate position as T3 is ridiculously expensive and they do have financial constraints.

BTF had posters to advertise meetings and my surgery didn’t mind me putting them up but that was the 80s - had to get through reception so asked a doctor.

I’ve just started on T3 with a lower dose of T4 but have reduced my dose slightly going for three quarters of the 5mcg tablets as the full 5 mcg made my hear a bit too thumpy. I take it you’ve been on this for a longer time? What has been your experience?

Despite having TSH which would indicate overtreatment when I dropped the dosage hypo symptoms worsened. Wish I’d seen an endo years ago. Anyway turns out my conversion is not good. How about you?

Hennerton profile image
Hennerton in reply toCatseyes235

I fear we shall be told by admins that this conversation is not relevant to the general thread. I do understand this and can send you a private message if you wish. I definitely have lots of experience of starting T3 and for several months at the beginning, I was on the T3 only regime. Let me know if you wish me to write a pm to you.

Catseyes235 profile image
Catseyes235 in reply toHennerton

That would be ironic if several people are saying they’d like to meet up or connect with others and aren’t allowed to, but yes private message would be good. The threads on all these discussions do go on ...and on.... and yes social media brings us together but in a slightly wary way.

Valerie0106 profile image
Valerie0106

I wouldn't use one.

Maof4 profile image
Maof4

Brilliant idea! Also, desperately needed

Rudehealth profile image
Rudehealth

Would love a helpline, some days I have so many questions on the day's I don't feel right. Yes I can search on the internet or look at the many books I have and occasionally (more often than not) go around in circles. Someone to advice or give support on what I already know or can't remember or can't find or don't know would be a so helpful and a lifeline.

Canu profile image
Canu in reply toRudehealth

I feel exactly the same!

Santolina profile image
Santolina

Find this site far to complicated; a helpline needs to be run by health professionals as there's far too much anecdotal chit chat. The European network is excellent - perhaps collaboration?

FrostyKnickers profile image
FrostyKnickers in reply toSantolina

I wonder where we would get 'health professionals' that understood thyroid disease who weren't already overrun with desperate thyroid patients. They are few and far between and already very busy. It is much better to use patients who have got better imho

haggisplant profile image
haggisplant in reply toSantolina

Yes, you’d open selves to litigation unless regulated.

DeeD123 profile image
DeeD123 in reply toSantolina

The reason I joined and always recommend this site is because health professionals have made me extremely ill on at least three occasions. All thyroid related. Give me good clear advice from fellow sufferers any day.

Labsmum profile image
Labsmum

Such a good idea. Recently had my thyroid removed and I had no idea the effect it would have on my body. This forum has been a godsend in helping me understand my condition more, to be able to speak with someone who understands what you are going through and be able to advise would be very reassuring.

bantam12 profile image
bantam12 in reply toLabsmum

The forum has helped you because you are getting advice from people who have been or are going through the same situation as you. A random person on the end of a phone no matter how they've been trained, probably hasn't been through the challenges you are experiencing so can only give tick box answers, at least with the forum you get varied experiences and advice from those that know what it's like !

twizzle303 profile image
twizzle303

If I wanted advice on endocrinologist.

FancyPants54 profile image
FancyPants54

I like the idea of a helpline. But not run by someone who isn't an experienced thyroid specialist. I can't see the point. If we run into trouble with our medication we need experience and thinking outside the box. Not someone running down a list of check boxes.

I fear this could be a pointless red herring other than for newly diagnosed patients who have been given zero information about their condition or the medication for it and how best to use it.

haggisplant profile image
haggisplant in reply toFancyPants54

Absolutely. Btf do have this.

S2017 profile image
S2017

To also find out linkages between thyroid and other diseases. Don’t want to be in a situation where lack of knowledge cause another condition which could have been prevented/severity reduced by addressing it early.

KathFrances profile image
KathFrances

For info about Reverse T3 and how to deal with hypo symptoms when taking NDT and test results are not indicating hypo

shaws profile image
shawsAdministrator in reply toKathFrances

This is an excerpt from one of TUK's Advisers (now deceased) who was also a researcher and scientist and also took T3 as he was 'thyroid hormone resistant:-

4. How useful is a reverse T3 test in diagnosing HYPOTHYROIDISM?

I believe the test is of virtually no value in diagnosing hypothyroidism, if by hypothyroidism we mean a thyroid hormone deficiency. When the thyroid gland produces too little T4 and T3, less of these two hormones are available. The vast bulk of what the thyroid gland produces and releases into the blood is T4. With a lower-than-usual amount of T4 available, its likely that more of it will be converted to T3 rather than reverse T3. This presumably results from a need to keep the T3 high enough to maintain effective cell function. Also presumably, reverse T3 production from T4 will decrease to some degree. As a result, in moderate-to-severe hypothyroidism we might find low T4, low-to-mid-range T3, and a low reverse T3. However, as far as I know, no researchers have shown that this lab result pattern is useful for diagnosing hypothyroidism.

tpauk.com/main/article/dr-j...

chloetink1968 profile image
chloetink1968

This is something that is long over due. I was diagnosed around 10 years ago. I felt really unwell, I was at the doctors all of the time & although I respect the NHS, I really do feel GP’s have got minimum knowledge on Thyroid issues and need updating. When you explain to a GP how you feel, they say you are either depressed of you have anxiety. I was so fed up with this, I asked for a referral & went privately to an endocrinologist - who informed me that my thyroid was more or less had stopped working. Within a couple of weeks I felt like a new woman. I shouldn’t of had to go through that, it make me a uestion your own mental capacity, I felt like I was going crackers. It is very stressful & upsetting to individuals. Everything I know is from your website & self help groups that I have researched myself and from others who are in my shoes.I think this is a fantastic idea and if you need volunteers I wound happily get involved 🤩

RhianR profile image
RhianR in reply tochloetink1968

Hi, like you I've been sick with Hypothyroidism (Hashimotos) for 10 years ...well its actually 11 this year but let's not split hairs haha! Sonehow I retain a sense of humour. I liked your comment. What was it that made you feel like a ..."new woman"? I would certainly like to feel that way!!!! On Levo only treatment for the past 11 yrs its made no difference to my symptoms, and I've never met a supportive Endo in all this time. Yours sounded great, lucky you. Currently I'm on combined T4/T3 treatment for the past 5 months but seeing no benefit. Could be the wrong dose, or that doing a combo approach to treatment is no good for me. I don't know. I have ME/CFS on top of Thyroid disease, and as my Thyroid has got worse my ME/CFS has got more severe these past 3 years. Well, that's my theory in the absence of any other answers. Especially as I've learnt on here that so many Thyroid patients sadly develop ME/CFS. Interested to hear about your positive treatment story. Take care 🙂

Earlyriser profile image
Earlyriser

Good for people who don’t have access to or can’t use the internet 😊

imogen2010 profile image
imogen2010

Great idea 👍 it’s a brilliant support to us as our own doctors just don’t seem to understand the condition properly & do not give enough advice & support.

BumbleyM profile image
BumbleyM

Great idea - I wish there had been a helpline when I was diagnosed - my GP was a bit flummoxed, so it took ages, and me sending off for private tests, to reach a conclusion... a helpline would really help anyone new to their condition, I'm sure.. .

Koola profile image
Koola

To educate myself! I knew absolutely nothing when I stumbled upon this forum in 2018. I still don't know much but at least I'm not like a stumbling, half blind person in a tunnel. Though I don't know if I've "seen the light" at the end of it yet, at least I get answers like a temporary light showing me where I'm at. That's half the battle.A helpline would be very useful for those moments, many, where I don't have the energy to sit and type up a question, let alone type up blood results etc. it gets that way. In short, I'm all for it and vote yes!

😀

Catseyes235 profile image
Catseyes235

I’d be wary of some advice which if I’d had when first diagnosed I’d have found overwhelming, scarey and unnecessary. I think it should be made clear that the majority of people on T4 are actually doing okay .. I know many.

The forum is for the significant minority who are not feeling great, not getting optimum treatment or dissatisfied with treatment or have found changes in reactions with age/menopause etc. Just like doctors and endocrinologists we need to listen and take account of symptoms.

When people are Hypo as I know to my cost you can feel quite crazy and clutch at straws to feel better so must be wary of the ‘ you must’ type of advice which is as bad as doctors not listening. (I spent a small fortune on homeopathy before diagnosed)!

shaws profile image
shawsAdministrator in reply toCatseyes235

I was so relieved to find Thyroiduk.org.uk as no-one could diagnose me through my clinical symptoms alone - as our old-fashioned doctors did as they had been trained in the clinical symptoms a hypo patient would have . I have put my history in my 'page' and if you want to read click on my name and it will take you to it.

JemBron profile image
JemBron

You do not mention hyperthyroid in the survey. Would advice be available?

deancat profile image
deancat in reply toJemBron

Hyperthyroid (in remission at moment) as well. If I needed to contact the helpline it would be with questions from a hyperthyroid point of view so have ticked 'other' box.

JemBron profile image
JemBron in reply todeancat

Yep I ticked ‘other’ but then could not add a comment. Helpline would be a great idea.

pennyannie profile image
pennyannie

Hey there Lyn ;

Having found support through your good self, and this forum some 5years ago, I now self medicate with full spectrum thyroid hormone replacement, have my life back and am eternally grateful.

The support and inclusiveness offered to everybody on this forum is amazing and I learnt from reading other people's posts and the answers for a good year, whilst I built up my vitamins and minerals, before I even found the confidence to question my treatment in primary care.

From my perspective now I would use the help line for sourcing current safe suppliers of T3 and or Natural Desiccated Thyroid and if I thought I need an endocrinologist who knew his/her onions.

Lopears profile image
Lopears

A phone call would be great! But it would have to be quick, not ringing or kept online for ever. It wouls also have to be cheap, or else the majority of people could't use it. And it would have to have a real, experienced person at the other end, not a robot. That's a lot to ask, isn't it?

shaws profile image
shawsAdministrator in reply toLopears

Some local groups are very helpful and meet up regularly with a host who opens their home and invites people who want some information and camaraderie and we can moan about the medical profession and how they treat us or don't treat us with options that are available.

Omadoll profile image
Omadoll

I think it's a great idea. Can I also throw out there The GP's I consult do not have a scooby about thyroid conditions. I developed weight related diabetes 2 and when the nurse told me this, after blood tests etc, I said if my thyroid condition was better managed I would not have a weight problem regardless of diet and exercise. She replied she did not see a connection and she only deals with diabetes 🤦‍♀️

I have taken a complaint out with the GP practice but this was put aside with a promise to take the required blood tests next time!!!

StrongCoffee profile image
StrongCoffee

This is a great idea, thanks for putting the effort into it.Just reading the various options above has already made me think of two areas I need more information about and I've been on Levo for a couple of years or so now and thought I was fairly 'stable' (for want of a better word).

Keep up the good work!

jojo1960 profile image
jojo1960

I have had an under active thyroid now for many years for which I am taking 125mg levothyroxine at the moment, during a lot of this time I suffered with palpitations many times, to be honest the doctors don't do much about it, so...I decided to go on a gluten and dairy free diet and much to my surprise my palpations went away and I feel much better in myself along with better blood pressure readings, my skin looks healthier, No more heartburn or indigestion, but I do suffer with Ectopic Hearts beats from time to time, could this be my medication doing this? as this is the only meds I'm taking now, and my doctor tells me there is no other meds other than Levothyroxine? he in the UK.

SeasideSusie profile image
SeasideSusieRemembering in reply tojojo1960

jojo1960

This thread is purely for comments about the proposed possibility of a helpline.

Please make a separate new post on the forum to ask your question.

Delfim profile image
Delfim

I think this is an excellent proposal . I never get any other info off my doctor than satisfactory when I ring up for results no print outs nothing . My chemist have given me mixed levothyroxine from the one I’ve been on for several years and not sympathetic when you query it and explain thst your suffering with the changes It’s very frustrating. .

sidneymark70 profile image
sidneymark70

The thyroid disease is such a complicated subject. I would so appreciate talking to someone with expertise. And I feel very alone with this illness too.

annonymouses profile image
annonymouses

this woudl be great also local groups to meet in person [ in the u sa too if possible ] also infroamation on how to recover and get your thryroid working again on it 's own [ one osteopathic dr said how would you like to get your thryoid to s tart wokring again on i ts own,by stopping the thyrogold ] i was thrilled however his superior put a stop to that on the next visit. probaly afraid fo malprac tice lawsuit ]

synthroid only made things worse for me did not help a t all .thyrogold did work for several years then stopped working now taking nutrimed s and thyrovanz[ last yearthyrovanz had also stopped working gained weight ] woudl love to hear what has helped others

Anthea55 profile image
Anthea55

Would there be a problem if the people you trained were giving advice which was not approved of by the NHS? An example of this is info about access to T3 or NDT. If doctors are being hauled before the GMC for this sort of information your helpline might be in trouble.

On the other hand a listening ear who can calm your sobs and point people in the right direction would be helpful.

Also there are different points of view about some things, both of which are equally valid. An example I'm thinking about is when to take hormone replacement. The general view on here is that it should be on an empty stomach well away from food etc, but I was advised by Dr Peatfield to take it with food as it's better for the stomach. This advice is also given by Dr Myhill - see this link to Dr Myhill's site. These are both doctors who I trust.

drmyhill.co.uk/wiki/Thyroid...

Jtaylorhoo profile image
Jtaylorhoo

I think it’s a splendid idea. 😃

nicnic6b profile image
nicnic6b

My experience of the uk doctors is that they only follow limited guidelines. In other countries you get much better advise and information. The have access to an advisory option who specialise in thyroid would be an incredible help..

Ari3 profile image
Ari3

Also about adrenals and how to test and read them and how to address this …what impacts thyroid function and how to lower tpo in order to feel better and what’s involved in Hashimotos causes and how to address them . We desperately need NDt and t3 in uk I mean it my private medication cost me £150 and I soon can’t afford this what about people who can’t work due to Hashimotos and can’t afford ndt or t3 and are allergic to t4 and has got DIO2 condition !!!!

Britpol profile image
Britpol

I found Healthunlocked extremely helpful, although some of the participants posted unreliable information. Having a Helpline staffed by people trained by Thyroid U.K. will make the information helpful and reliable. Perhaps, with time, we are going to get doctors specialising mainly in the thyroid disorder, not diabetic + thyroid semi-specialists.

Yellup1 profile image
Yellup1

Ofcourse ! Thyroid U.K. and this group at Health Unlocked know more about this illness and are more supportive than most endocrinologists bar a very few and most GP’s !

Jazz4duck profile image
Jazz4duck

I am already a member of Thyroid UK. I find their articles and reports very very helpful. Would support a helpline.

Junep profile image
Junep

In my experience with a thyroid condition , there is often things that crop up that you haven’t experienced before , so yes it would be so useful to have this helpline available .

CapnM profile image
CapnM

I am happy using the internet and this excellent resource - no need for a helpline for me personally. The person at the other end would likely be using a knowledge database which I basically have direct access to already.

And I would far rather scarce resources were put into affecting knowledge and change in the medial community which would amplify any investment far larger than a helpline.

annca1 profile image
annca1

Official guidance to challenge doctors ddecisions

Tythrop profile image
Tythrop in reply toannca1

Oh yesssss I agreee

sueE17 profile image
sueE17

Would definately be a great help. Thank you.

eachpeach profile image
eachpeach

A helpline would be a great help. Unfortunately your poll is heavily skewed towards Hashimoto’s and doesn’t factor in Graves’ disease which can be much more serious. GPs and consultants even are often lacking in knowledge about Graves’ making other support invaluable.

rmd49 profile image
rmd49

I wouldn't use a helpline. I'm happy with the online responses I get from ThyroidUK

DoeStewart profile image
DoeStewart

Hi Lyn, I would use the helpline to ask about access to other thyroid medication besides levothyroxine. Would also be great if the helpline could recommend Endo's who actually understand this disease. As somebody else has mentioned, the helpline would need to think outside the box and not try to put us all in the same bracket, we are all different with many different experiences.

asiatic profile image
asiatic

I think speaking to someone on the phone would be a bit like visiting the doc when you think of all the things you should have asked but forgot. The forum goes at a slower pace and gives a variety of opinions, some you leave others you pick up on and explore in more depth. I wouldn't use the phone line but it would be good to give people the choice.

TVOReason profile image
TVOReason

I wouldn’t use it, I prefer it on the site as any advice given is there for other members, a phone line just answers the one who is ringing and so information is not disseminated

haggisplant profile image
haggisplant

It’s a great idea, but the BTF do have helplines that I’ve always found helpful. And that’s including info about t3.

Remember they can impact the BTA of endos.

TUK must try to work with them (BTA) to enable better healthcare practise on the front line nhs for all.

I wouldn’t want TUK to risk being closed down for fined for not giving official advice, as for example the wonderful helplines at Asthma U.K. They’re trained asthma nurses.

Nutty9toes profile image
Nutty9toes

Iam frustrated as my condition hasn't changed in the last 20 yrs, saw an Endo and it took me 3 yrs for him to put me on T3 gave me 6 mths supply??, they were small lose tablets which l believed to be a Placebo. I would love some advice and the name of a reputable Endo. So your suggestion would be wonderful

gillypillys profile image
gillypillys

Not able to have 12mth blood test and unable to see a doctor.

Mistydeb01 profile image
Mistydeb01

Information about good thyroid specialists, food sensitivities when hypo and help with GP’s to go in armed when fighting with them for starting medication or increase. It’s too much for a newbie to understand their illness and navigate their doctors. Thyroid nodules/ cysts and when to know if you’re being fobbed off (I don’t trust doctors to tell me the truth) and information is either lacking or you don’t know if it is correct on the web

rosco1 profile image
rosco1

If other symptoms I have are connected to my Thyroid

rosco1 profile image
rosco1

Too find out if my other symptoms could be connected to my Thyroid

CatsofCatford profile image
CatsofCatford

I think I would always rather use the forum. I’d prefer it if you used the money to create easily accessible fact sheets about common concerns such as timing of medication snd how to take medication before a blood test.

Shodle profile image
Shodle

Finding a private recommended endocrinologist

silverfox7 profile image
silverfox7

Great idea Lyn but back in the day a friend and I tried to get one off the ground in a large city. We found a venue which were happy for us to meet up in one of their bays. We encouraged people to buy a drink from the bar and Thyroid Uk gave us leaflets, etc but it didn’t last long. No one else offered to help and left us thinking we were the only people in the city interested. No one ever popped in to chat so it eventually died a death. But I still agree it’s an excellent idea but I’m too old now to try again.

GrowingVeg profile image
GrowingVeg

I find the forum really so helpful in understanding the condition and being able to stand up for my self when talking to the GP about how I feel. I don't think I would have been able to do this without support from others.

pamelashep profile image
pamelashep

I think it’s a great idea

Framboise profile image
Framboise

I was ill for 8 years before I was diagnosed and I remember being told by every doctor here that my thyroid was fine as my results were all within range, despite a very low TSH which none of them could explain. A friend in Canada persisted in telling me she was convinced my thyroid was the problem, so eventually I wrote to TUK for their information sheet and read my own story in the pages. This led to me making a chart of 8 years of thyroid test results which showed a very erratic pattern. Faced with that my GP referred me to Dr Skinner (but always refused to treat me), and the rest is history. I soon became aware of various people offering phone help but wish I'd thought of just phoning someone at the start for advice, moral support, and identifying how all the various problems I had fitted together.

BonnieG123 profile image
BonnieG123

I would if something abnormal was happening otherwise probably not.

revitalise profile image
revitalise

This would be an extremely useful service as since I have been diagnosed in June 2021 with Hypothyroidism I have relied totally on Health Unlocked for advice and guidance. I was just told I was Hypothyroid and a prescription sent to the Pharmacist for me to collect. When I asked about side effects of medication I was told to read the instructions that came with the Teva Levothyroxine. I have not been supported at all by my GP. Of-course then if you dare to mention you have been googling anything on Hypothyroidism that is refuted immediately.

Syddy profile image
Syddy

I have anxiety. My thyroid level seems to go up and down so some days communicating is impossible. I wouldn’t be able to use it

Zephyrbear profile image
Zephyrbear

Personally, I still wouldn't be interested in a helpline, even if the people on the other end were trained by you. At the end of the day it's still only one person you're talking to who may or may not be au fait with the particular issue you want to discuss. At least by posting a question on the forum you'll get a variety of answers some of which will, ultimately, be relevant to what you need to know.

I was diagnosed Hashi's in 2004 and had been looking at the forum regularly before finally joining in 2010 when there were only around 6000 of us! My, how that's grown and with it the wealth of knowledge at our disposal.

I'd rather consult that on tap than phone one person who may or may not be having a good day... Sorry.

Waveydavie profile image
Waveydavie

I'd like help with diet and excercise

Haveaquestion profile image
Haveaquestion

Advice on TSH levels and dosage when TTC and in early pregnancy, should GP be closed for the weekend (or even in the case of delayed GP appointments). Also, for urgent referrals to be made by Thyroid UK to endocrinologists and obgyns given how crucial TSH and HCG levels are for the survival of the baby.

Shylton profile image
Shylton

I was originally diagnosed with Hashimoto Thyroiditis in early 2000 then moved out of the area and changed GP practice in 2003. I had been given no information about Hashimoto ever except when I contact Thyroid UK. At an GO appointment with Trainee GP, I mentioned Hashi asking if it could be the cause of all the allergies I seemed to have recently reacted to. She said that I didn't have Hashi, I told her I was told I had in early 2000. She retested me twice in 2018 and confirmed I had Hashi. Unfortunately at the time, I was always told that I would be informed if there was anything untoward in the test. In early 2020 a friend told me I should check online my GP notes which I did. I found that the GP practice would enter something that a patient should be aware then add "Patient informed". I was shocked as I had not been informed. I found that going back in history a lot of tests that I should have been aware of had the same wording. The other wording that Drs use is that it is within the reference range. Today I find it via Thyroid UK and Health Unlocked that it is not within reference range if on Levothyroxine. I will be pursuing this item with my GP.

It is shocking to me that the very people who are meant to look after our health is ignorant about essential information required to give best treatment.

Murphysmum profile image
Murphysmum

Abso-bloody-lutely!!

I certainly wouldn’t be here by now if it weren’t for this forum.

Musicmonkey profile image
Musicmonkey

I replied other as well as all categories because you never stop learning about your thyroid condition

Frodo profile image
Frodo

I'd use it to get information about the condition, tests and treatment that doctors don't know or don't make available.

AD49 profile image
AD49

I was suffering old thyroid symptons your sight asked if my usual brand of thyroxine had been changed which it had to teva suggested I asked for my old brand to be prescribed & was back to feeling better in no time. Its always good to keep up with your sight & I think a helpline would be beneficial to many people .Thank-you all for you support .

DJ14 profile image
DJ14

i would love to be trained too as I have suffered from over active thyroid for near on 20 years and on carbimazole. I went from over to under to over and touch wood, settledI was frightened when it all become because I was having panic attacks, heart racing episodes and a huge loss of weight. My hands were shaky. The GP put me on betablockers straight away and then after under the hospital went on carbimazole and was kept an eye on

ie weight, bloods and consultation. Alas I couldn't get that in other areas so our GP surgery now take a 6 monthly blood test and thats all. You are pretty much on your own.

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