Access to information and advice on thyroid con... - Thyroid UK

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Access to information and advice on thyroid conditions via the helpline would improve the quality of my life.

lynmynott profile imagelynmynottAdministrator403 Voters

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114 Replies

It would improve my life but only if it was someone really qualified at the end of the phone. Thank you for all you do x

Really qualified??? The doctors are supposed to be so…I’m not sure who IS “Really qualified” I’ll give you ONE definition…

A DOCTOR who himself/herself has a thyroid condition , or their wife, husband,mother or daughter has, and they don’t find the nhs approach satisfactory and they can’t get on with just Levothyroxine only and they have a problem getting type of treatment and the dose right..and this Doctor is really clued up and well read on all things thyroid…and who looks in on this forum…etc etc etc…

(this isn’t meant to be a cynical joke…)

A telephone helpline might detract from the wonderful online service currently offered

Online advice sounds much more useful than a telephone helpline, but I didn't know such a thing existed, I was lucky to find this site. My gp's have never offered any kind of assistance whatsoever.

Could you possibly point me in the right direction for this online service please? Thank you.

BrynGlas profile image
BrynGlas in reply to Affrael

You are on it right now! ;-)

Affrael profile image
Affrael in reply to BrynGlas

Thank you. I haven't been on here much lately. ☺️

Even if I got no help from the helpline in regard to reducing physical symptoms a helpline would have helped my mental health, especially in the early days when I was being medically gaslighted by the GP's.

Support, understanding, and empathy would've gone a long way when I was trying to convince everyone around me that I was unwell and they were reluctant to believe me when the GP had said I was 'fine'.

BrynGlas profile image
BrynGlas in reply to plant_lady

How long was it before you found this Forum plant_lady???

plant_lady profile image
plant_lady in reply to BrynGlas

I found the forum quite early on but I didn't have capacity to hear what I was told. Took me awhile to really believe there was something wrong with me, especially as the Dr told me everything was normal. 🤷🏻‍♀️

I suspect that might have been different if I'd heard it from an official charity helpline rather than 'strangers on the internet'.

(Obviously I have since come to understand that those same strangers on the internet know a damn sight more then the drs and did in fact give me my life back!)

Ragerty profile image
Ragerty in reply to plant_lady

I couldnt of said it any better.

Given that the only treatment I can get is Levothyroxine, which I've been taking for 13 years has NEVER worked, I don't see much point to accessing information that is useless to me.

abirose311 profile image
abirose311 in reply to

Levothyroxine may be the only NHS option in your area, but you have a right to see an endocrinologist of your choice in another Area Health Authority where they allow prescribing T3 which, for me, was lifechanging!

in reply to abirose311

I've been trying for years, without success to switch to a natural form like Armour or Naturethroid. I even got to see an endocrinologist at a hospital near me; what a waste of time! So now, the excuse is cost and the 'Bug'. Simply put, levothyroxine does nothing to alleviate my symptoms and never has. In fact, the first 3 years of taking the useless junk, left me in a 'brain fog' and it's always given me leg pains when I walk. BTW, I haven't investigated T3.

TSH110 profile image
TSH110 in reply to

But you did try NDT which has T3 in it. What was the problem with the NDT? I prefer NDT to synthetic T3. Like you I felt simply awful on Levothyroxine.

I presume you must have low free T3 that is making you feel awful. You might find T3 is what you need - but it’s a trial that’s nigh on impossible to get 🙄

in reply to TSH110

I've never been offered NDT.

TSH110 profile image
TSH110 in reply to

Oh so you have never actually tried it - sorry I misunderstood. I get my own NDT off the internet, but it’s become very pricey. I feel so much better for it but it annoys me we can’t get it from our GP’s on the NHS if we want it.

in reply to TSH110

That was the point of my comment.

TSH110 profile image
TSH110 in reply to

I missed the first post where you said you had only taken Levo. I though your attempts to switch to NDT involved actually taking it not just trying to get some prescribed. Hence the misunderstanding. Could you not get it yourself and self medicate?

BrynGlas profile image
BrynGlas in reply to

You can source and pay for NDT or T3 if you can afford it. T3 - Tiromel is much cheaper

plant_lady profile image
plant_lady in reply to BrynGlas

I have just been quoted £42.60 for 100 tablets of NDT, including postage!

BrynGlas profile image
BrynGlas in reply to plant_lady

Yes that is a trial size isn't it?

in reply to plant_lady

So how do the doses compare with levothyroxine (I take 100mg), a little over 2 quid a tab. Would I need more or less of an NDT?

plant_lady profile image
plant_lady in reply to

I think the accepted wisdom is that each grain of NDT contains about 9mcg T3 + 38mcg T4.

in reply to plant_lady

Thanks for this but it doesn't really help me as NDT and Levo need very different doses to do the same thing. But folk wisdom tells me that an NDT is 3 times as strong as Levo, so maybe 25-30mg of NDT? It really annoys me that the NHS won't supply them, it's an expensive treatment, given that the cutoff for drug costs (per yr) is £30,000!!!

in reply to

Sorry, that should be 'it's NOT an expensive treatment'.

humanbean profile image
humanbean in reply to

But folk wisdom tells me that an NDT is 3 times as strong as Levo, so maybe 25-30mg of NDT?

It isn't NDT that is three times as potent as Levo. It is T3 (which is a component of NDT) that is about three times as potent as T4.

So 60mg of NDT contains 38mcg T4 and 9mcg T3.

This is equivalent to 38mcg T4 + (9mcg x 3) T4

which means 60mg of NDT is equivalent to 65mcg Levo.

60mg is the closest modern measurement to the old-fashioned measurement called a "grain". So someone might tell you they take 3 grains of Armour or NDT.

Most people feel best on 2 - 5 grains of NDT. There are some people who feel the proportions of T3 and T4 in NDT don't suit them so they end up adding extra Levo or extra T3 to their NDT.

in reply to

Here are my blood test results, not very good!

(I'm on 100mg of Levo):

21 Sep 2021

TSH

21.3 mIU/L Range: 0.27 - 4.2 R

Free T3

2.6 pmol/L Range: 3.1 - 6.8

Free Thyroxine

15.2 pmol/l Range: 12 - 22

Thyroglobulin Antibodies

>4,000 IU/mL Range: 0 - 115 R

Thyroid Peroxidase Antibodies

200 IU/mL Range: 0 - 34 R

Folate - Serum

4.7 ug/L Range: > 2.9 R

Vitamin B12 - Active

193 pmol/L Range: 25.1 - 165

Vitamin D

123 nmol/L Range: 50 - 200 R

Ferritin

158 ug/L Range: 30 - 400

CRP HS (Inflamation)

1.5 mg/l Range: 0 - 5 R

helvella profile image
helvellaAdministrator in reply to

Please post in a brand new post.

Sheer chance I noticed this. Buried on a poll with a large number of replies, you are not going to get many responses.

in reply to BrynGlas

Tiromel is a weight loss drug! NDT is simply too expensive for me.

BrynGlas profile image
BrynGlas in reply to

It is helping in that direction, but I wouldn't describe it as that personally. It is the only thyroid hormone I take, that is how I would describe it I think.

Do you take T3 yourself?

DandyThyro profile image
DandyThyro in reply to

Tiromel is T3/liothyronone and is safe to take in the advised doses for people diagnosed with hypothyroidism. It is marketed by unscrupulous sellers as a weight loss drug, and the buyers are told to take 25mg + a day. This is dangerous for anyone who isn't hypothyroid. But it is the T3 I take. It helps with my symptoms but it certainly hasn't caused weight loss.

helvella profile image
helvellaAdministrator in reply to DandyThyro

I think you mean 25 micrograms.

25 milligrams would be unsafe for an elephant!

DandyThyro profile image
DandyThyro in reply to helvella

Yep. I never was good at maths! 🤪

in reply to DandyThyro

Okay, so I'm currently on 100mg of Levothyroxine but still haven't figured out the equivilent T3.

And, I just got my thyroid results back as follows:

TSH: 21.30 mIU/L (Range 0.27-4.2)

Free T3: 2.6 pmol/L (range 3.1-6.8)

Free Thyroxine: 15.2 pmol/L (range 12-22) (range 12-22)

Autoimmune

Thyroglobulin Antibodies: >4000 IU/mL (range: 0-115)

Thyroid Peroxidase Antibodies: 200 IU/mL (range: 0-34)

in reply to

BTW, any Levothyroxine over 100mg gives me heart palpatations.

DandyThyro profile image
DandyThyro in reply to

I'm not sure of the direct equivalent, Flaco. But I got also palpitations on 100 mcg of Levo 5 years ago and asked the GP to reduce it; they refused because my TSH was normal and I've ended up with a cardiac condition as a direct result. It's made things even harder regarding persuading doctors to assent to my taking T3. I got an endocrinologist who advised my GP to trial me on 50mcg of Levo and 2.5mcg of T3. He refused. I later used that ratio as a starting point when I got my T3 privately and very gradually titrated my dosage up to 67.5mcg of Levo and 25mcg of T3_daily and have been doing that for about three years. I also cut out gluten and dairy, which brought my high antibodies down to normal (it took a couple of years). My most recent results were T4 just under range, TSH slap in the middle of the range and T3 in the upper third of range, but my symptoms are bad again. I've recently started trying supplementing iodine and this gives me more energy. I have to do it alone as my gp and endo are both useless.

in reply to DandyThyro

Well, getting turned on to my low cortisol level has completely transformed my understanding of my thyroid condition. It's why I'm not overweight, rather I'm underweight for my height. So now I need to deal with the cortisol issue and the thyroid, together, given how connected it all is. Cortisol is a precursor of T3!!! The HPA Axis rules, OK! But I'm staggered by the total ignorance, nor only of GPs but the NHS itself. Talk about dogma!

humanbean profile image
humanbean in reply to

I never found T3 of any description made me lose weight. It was a huge disappointment for me. I know that doctors think that patients only want to take it because we want to lose weight.

BrynGlas profile image
BrynGlas in reply to

I was never referred to an Endo either, not since 1999. But I went it alone in the end and without this Forum I wouldn't have known anything about treating myself with synthetic T3. It isn't as expensive as the NHS was paying that caused all the furore. TIt is very reasonable, £10 a pack.

You have to be willing to go for it. If I was much younger and within child bearing age, I may well have chickened out. But at 68, I decided I was going for it and I am not sorry.

My hypo came along with the menopause as I notice a lot of us did.

RhianR profile image
RhianR in reply to TSH110

Hi 🙂 I saw your comments about NDT and wondered how you feel on it compared to T4 only or T4/T3 combo or T3 only if you've ever tried that? Sounds like NDT has been a positive outcome for you. What were you like off NDT? Like so many with Hypothyroidism (Hashi) I've felt no better on Levo T4 only for 11 years (100-125mg), and successive NHS GPs & Endos have never listened to my symptoms. For the past 6m I've been on T4 (100mg) & a trial of T3 Liothyronine (20mg) on private prescription as was forced to try a private dr, but I still feel so rubbish. I also suffer from ME/CFS which doesn't help. Current Dr thinks my TFTs look really good and yet I told them my symptoms are still terrible. My TSH is very suppressed (0.01) with FT3 of 6.1 & FT4 of 15.5. On paper I know they look fine but I'm not fine. Usual story. Following a Dr discussion I do have the option to try NDT (private prescription) OR reduce my Levo to 75mg + increase T3 to 30mg (private prescription). Not sure what option to try and any advice from you would be much appreciated 🙂

TSH110 profile image
TSH110 in reply to RhianR

Hi RhianR. I never felt very well on T4 I had a good endo who aimed for optimisation with TSH 0.2-0.5 and the frees in the upper third of range but my free T3 never got there. Felt awful on less T4 and more T4 and the suggested T4. This was after 9 months of being optimised took forever to get anywhere near better numbers. I knew something was wrong because close relatives recovered rapidly on T4 but I didn’t. It was hugely disappointing to me. I suffered two years of hell on the stuff, I got really fat (always been a rake) my angina reached a frightening zenith, I felt brain dead, I was slow and very stupid. Psychologically it was devastating. I felt like a shadowy thing that didn’t deserve to live because I was nothing just a thing that existed. I got very suicidal. It was awful after all I had been through I was not diagnosed until it was almost too late so had been to hell and back before even getting any T4. I happened upon this forum and discovered T4 was not the only treatment which made me furious but also inquisitive. I decided I had nothing to loose in trying NDT which was much easier and cheaper to source than it is now. I got hold of the thyroid patient advocacy NDT protocol and got hold of some NDT swallowed hard and gave it a whirl. Results were almost instant, I felt whole again back to being me not a thing which was such a relief it was quite amazing like I had found myself again after being totally lost. Improvements kept going and I switched gradually over to NDT. I have never looked back. The weight shifted easily without any effort, my life long depression simply evaporated. I came alive again colour came back into everything. It was nothing short of miraculous. I did try adding some T3 to the NDT after a short blip, but abandoned the experiment and still feel very well on NDT. I am glad I had the courage and the support here to make the move. I have never looked back. I have a fulfilling job (I was a failure at work on T4 only, I was utterly useless despite it being a job I had excelled at before becoming ill) and do my running and my allotment. In many ways I feel better than I had for decades because of no longer suffering all that debilitating depression. It must have been a lack of T3 all along causing it. I have since discovered I have the DIO2 polymorphism for poor conversion and I have a gene for thyroid hormone resistance so perhaps they explain it. Why I drew the short straw in the family I don’t know, they may be fine on T4 alone but I was not but have felt well on NDT for c. 7 years Hope that helps. I know there are people here who have a huge thyroid hormone resistance and need very high doses to feel well. Mine can’t be bad because I do well on 1.75 grains. Initially I only needed 1.25 grains which is not a massive dose.

My only other thought is that your vitamins may not be optimal. On Levo I have very bad vit d deficiency which can have terrible consequences exacerbating the hypo symptoms and making everything even worse. Other ones of consequence seem to be K2, zinc, magnesium, selenium and probably others too.

Hope that helps

RhianR profile image
RhianR in reply to TSH110

Thanks so much! Everything you described feeling I'm going through 11 years on from my Hypo diagnosis. Nobody in the so called 'Medical World' seems to think my Hypo/Hashi is why I developed ME/CFS, but I'm convinced there's a link or that any other options are worth a shot. These people are on such massively overpaid salaries, and yet have no interest in helping those who do not fit the typical Hypo patient mold. It's insane. You're right, there's nothing to lose by trying NDT and I want my life back so desperately. I need to get it ordered. Please can you advise on that or do you get a private prescription? Highly unlikely on the NHS I know LOL 😆 Thx. p.s did you ever try T3 only?

TSH110 profile image
TSH110 in reply to RhianR

We can’t reveal sources on the forum. I will send a private message later on this evening. I have never tried T3 only I tho I it’s supposed to be a bit tricky but for some it’s essential as NDT and Levothyroxine are not suitable for them.

RhianR profile image
RhianR in reply to TSH110

Many thanks 😊

giraFfe39 profile image
giraFfe39 in reply to TSH110

Could you privately message me where you source NDT. I really need to source some as doctor will not prescribe

helvella profile image
helvellaAdministrator in reply to giraFfe39

Please post in a brand new post.

Sheer chance I noticed this. Buried on a poll with a large number of replies, you are not going to get many responses - though TSH110 might notice, no-one else is likely to.

BrynGlas profile image
BrynGlas in reply to RhianR

I take T3 only RhianR

RhianR profile image
RhianR in reply to BrynGlas

Hi, thanks for your reply - do you feel good on T3 Tiromel only? Do you have any Hypo symptoms on it? Did you lose weight on it? Not a bad thing surely when weight gain is one of the horrible side effects of Hypothyroidism which T4 Levothyroxine does not counter. In some maybe, but generally it doesn't from what I've read on these groups!!! As said, I've been on T4 Levothyroxine (100-125mg) for 11 yrs which has been utterly useless in ridding me of Hypo symptoms. And adding 20mg of T3 Liothyronine about 5 months ago makes no difference it seems. Still got all those lovely Hypo symptoms 247 despite the numbers....which the GPs love to quote rather than do any further investigation or offer any alternatives ....because of their corrupt, anarchic system....IMHO. I must consider other options to get well. Thanks for your reply.

in reply to TSH110

Have you read this document from the NHS on T3/T4?

mm.wirral.nhs.uk/document_u...

What a depressing state of affairs! And I still don't know how much T3 I need! I can't even get to see (sorry, not see but talk to) my GP until the middle of October!

in reply to

Equivalent doses

The BNF states that 20–25 micrograms of liothyronine is equivalent to 100micrograms of levothyroxine [8]. The basic ‘rule of thumb’ in converting thyroid doses is that 100micrograms of levothyroxine is roughly equivalent to 25micrograms of liothyronine, or 1 grain (60mg) of AT, based on clinical responses [4]. See dose conversion chart, Appendix 2.

in reply to RhianR

Yes, this is what bugs me about the entire way the NHS deals with thyroid issues like hypothyroidism. I was diagnosed by blood test. I never presented any symptoms, or was I ever asked for them! And given that the blood tests I've had across these 13 years, shows tsh, t4 levels up and down like a yo-yo, my symptoms have never been affected. So much for blood tests!

plant_lady profile image
plant_lady in reply to

The thing is the helpline would be able to offer advice in terms of nutrients and things. Plus, it could also be helpful for TUK to have an anonymous running total of the number of people to whom levothyroxine is useless, or not doing as it should be.

Which would all be ammunition in the fight!

BrynGlas profile image
BrynGlas in reply to plant_lady

Yes, if you prefer to talk through it, it will. But I learned about supplements etc on this Forum and I can save messages and tit bits to the cloud, print stuff off (I am amazed my cloud it is still up there!) AND see how to spell things right! LoL

Horses for courses. Some of us will use it, some won't, that is life.

plant_lady profile image
plant_lady in reply to BrynGlas

Absolutely! I was just trying to highlight that it wouldn't necessarily just be 'useless information'. I'd assume that the person on the other end of the phone could advise in other aspects not just hormone replacement. :)

greygoose profile image
greygoose in reply to plant_lady

That's a huge assumption!

BrynGlas profile image
BrynGlas in reply to

I was the same since 1999 until I learned to treat myself with T3 right here! Over a year since I started and it was all worth it for me.

A helpline which also suggests the optimal ranges in which people feel at their best and options to go to see private natural doctors for NDT would have saved my life at the time x

I’m not sure why this is becoming an almost daily poll? It feels like the same question being asked in a different way every other day. A helpline might help some. I prefer this web site because I learn from other peoples questions and the wealth of answers that are given. The phone helpline would not allow us to learn from one another.

Thankyou, but please stop asking.

TSH110 profile image
TSH110 in reply to Goforitmum

You can ignore it if it’s annoying you. We should be supporting Thyroid UK’s consultations not criticising them.

BrynGlas profile image
BrynGlas in reply to Goforitmum

I have tonsay that I don't think I would use the helpline much. If I need any help I can put my question to the Forum and get an answer at the speed of light!

Our girls are so brilliant on this Forum.

But some might prefer to talk to someone. Each to their own/ horses for courses!

BrynGlas profile image
BrynGlas in reply to Goforitmum

Me too. I like seeing people's blood tests come on here. I then have a go at seeing if I can work out the answer, what is good, what isn't and why. Then I scroll down to see if I was right, a bit, a little, or a LOT.

I wish my GP came on here and tried the same, he would stop calling T3 an illegal drug maybe then!

If you felt you needed someone urgently to speak too when no one else would listen as I did in the begining when finally diagnosed with hyperthyroidism as was so unwell.

Yes it would but the only downside is how will this influence what doctors think ?

BrynGlas profile image
BrynGlas in reply to Verve001

They will just ignore it I would think. They ignore any other Thyroid site don't they, in the main?

A phone line will be dismissed in the same way.

I wish it wasn't so, but I don't think it will change Thyroid treatment in the least, unfortunately. It is whether the new TUK help line will help people coming to TUK for help with Thyroid problems that we need to think of. The ones who haven't been diagnosed, or who suspect that they may have a Thyroid problem, but can't prove it.

Verve001 profile image
Verve001 in reply to BrynGlas

I think it’s a great idea for new people seeking advice and for people who have been in here for years, doctors are just not trained in treating thyroid problems unless your a specialist even then they are not empathetic to what we experience .

I would like to say ‘Yes’ but am unsure if the quality of my life would be improved. Having instant access to information would, I am sure, provide a lot more confidence and ammunition when trying to improve the quality of life.

From this forum you can get a balanced view, taken from several people who have the same or different experiences to yourself or are experts in the many fields that influence the thyroid condition. Links can be posted to read up the science. A helpline is a one to one talking shop more suited to mental reassurance.

The helpline could be a massive help for people that find communicating/expressing themselves in writing.Thyroid issues also affect people that have dyslexia and other problems communicating.When I first joined I found it extremely difficult (and still do) to express and explain how I was.There are quite a few other people on here that also feel that way but are persistent enough to keep trying.If that can help others I’m all for it!

A helpline is a fantastic idea if you have the resources to man it and the right knowledge of course (which I know you do). Tricky because what we know doesn't line up with the treatments available to most people, so I guess it also depends if the advice will include steering people to ways they can help themselves in the absence of mainstream medicine being willing to help.

I think the question is wrong. It is very subjective and open to interpretation.Personally, a telephone service would not improve the quality of my life but I didn’t want to select no as the question in my interpretation, is well intended. Instead, I decided upon maybe because, depending on the knowledge of the person on the other end of the phone, a consultation might lead me to discuss medication dosage or adding a supplement, with my endocrinologist which might impact upon my perception of quality... I don’t know?

A helpline sounds brilliant but for a lot of us it's our GP's that dictate our Levothyroxine dosage regardless of our symptoms. Unless the helpline had any way of educating GP's( and a lot of Endos) I don't think it would change the way thyroid patients are medically treated or under treated. A helpline may be of benefit for members who self medicate but I dont think it will take the place of the forum.

Honestly, I think you can see from the range of responses here that a talking helpline is a very useful addition to the online forum. The written word can be misinterpreted or taken very literally in some cases (like people's interpretations of the question being posed!) so I would regard a helpline as complementary to the online forum and therefore caters to a wider range of people overall which can only be a good thing.

As I commented before, not knowing the quality of service offered, how can we know whether it would improve our quality of life. I've seen others say that any funding would be much better spent on working to improve diagnosis and treatment by the medical profession, and I completely agree with that.

RhianR profile image
RhianR in reply to StitchFairy

Yes, I totally agree that big change is needed in how the Medical Profession treats Thyroid patients - and more specifically Hypothyroid patients because it is not straightforward like they love to claim!! But unfortunately the majority of the medical profession do not think they need to improve the diagnosis & treatment of us, let alone hear it from us 'plebs' which I feel many of them see us as. The last Endo I saw on the NHS had me in tears via a telephone appointment ofcourse. God forbid they need to actually see a patient anymore in their Covid only bubble. They can be even more cold and uncaring towards us. Apologies for my sarcasm but it really does p***me off greatly that we on here get so badly treated, and have been for decades in many cases, including my own. That Endo who made me cry has no place being a Medical Specialist, paid extremely well by my taxes. He certainly won't listen to any other approach anytime soon. UK Thyroid shouldn't have to fund Education they should be getting from their Employers the NHS. Sadly the system will never ever change, which is why we all end up self-managing our illness & getting advice on here from 'Lay Doctors' who know and care.

It would depend on who was giving the advice. It must be fact base, safe and not just a personal opinion. Who would qualify to provide this advice?

It depends who will give the advice. I just paid to see an endocrinologist who told me that my blood results are perfect and to eat what i want. Cutting dairy and gluten won't help. I know it does help. I can't believe i paid money for this kind of advice

Yes, although I have learnt a great deal from some extremely helpful and knowledgeable posters on here, it would be great to be able to make a quick call to discuss some nuance or other.

I feel that this website has given me a huge amount of information and support regarding my Hashimotos, but if I was worried about something in particular, having access to information straight away would help me to worry less.

Its a brilliant idea Lynn. A support line is another form of support....and the more variety the charity can offer to people the better. Everyone has preferred methods of communication & ways of seeking support so I see a helpline as a complimentary addition.....

Only if the informed information we obtained would be then acted on by GPs and endocrinologists

I would like access to a helpline but operated by a suitably qualified person.

would only benefit if it was someone on the other end of the line who actually knows about thyroid disease and not a poorly educated medical "professional", thank goodness for forums like this.

Prefer to continue to use this web site

It would be absolutely wonderful to actually have access to my thyroid blood test results. So, if it was an NHS run helpline, maybe they could be given access to just that part of a patient's records, with their consent of course, in order to allow them to give the best advice possible.

BrynGlas profile image
BrynGlas in reply to Affrael

I think it would be Thyroid UK staffed wouldn't It? I can't see where the NHS would come into it. That is why Lyn is asking us whether we would use a ThyroidUK help line.

Or at least that is how I read it.

Affrael profile image
Affrael in reply to BrynGlas

I clearly read that wrong. I've seen a couple of these kind of questions and probably only half read it.I don't think it would improve the quality of my life. There is no doubt a larger range of experience from using this forum.

Anthea55 profile image
Anthea55 in reply to Affrael

You should be able to get your blood test results from your GP's practice. You should be allowed to sign up online and see them. Ask for sign up details. Online appointment booking was available before Covid as well.

Online advice sounds wonderful, thank you for all your work

It would have done before I had to learn so much about my condition myself and am a patient expert now! Still learning though, and things change, so it would potentially still improve my life!

An advice helpline would be a good addition alongside this online helpline where I have gained knowledge from other thyroid sufferers experiences. Many thanks for all that you and Admin do.

I tnink a helpline may be good for newcomers to the site but I benefit most from reading about other people's experiences especially when people refer to symptoms which I had thought were just me and not necessarily to do with thyroid problems.

Thanks so much for all you do for us 💙

BrynGlas profile image
BrynGlas in reply to RhianR

We need a Thursday clap for ThyroidUK Forum Admins I think. We all owe you a tremendous round of applause!

Online support and a telephone helpline working together would be great. This would hopefully allow more people to access help and support.

As I assume that people leaving comments are people who feel comfortable using online forums. This is not the case for everyone. Then a telephone helpline would be very useful.

There are occasions when comments are possibly misconstrued and this can result in a spikey exchange. Then add in feeling unwell, brain fog, anxiety etc. Just telephoning someone who is knowledgeable and sympathetic would be so much easier.

As you can probably tell I like the idea of both an online forum and telephone helpline

💻☎️📱👍

BrynGlas profile image
BrynGlas in reply to Tretchikoff

Yes, agreed.

I’m not keen on talking on the telephone and prefer online support. Thank you for all you do,

I don’t think a helpline would add much unless some miracle occurred and it was staffed by professionals who are not tied to TSH tests. BUT to propose another thought, I DO think the creation of a standard diagnostic test based on the results of patient self reported answers to symptom queries would be so useful. Eg a list of Hypo/hyper symptoms and if say, as example, you check ‘Yes’ to 5 or more of the even questions then the doctor can you assume you are hypo and prescribe from there (NDT too of course, in my fantasy world). That sort of thing. We don’t have a blood test for depression but no one would say it doesn’t exist or shouldn’t be treated if it is affecting quality of life. I’m personally amazed at how many doctors told me that my self reported hypo symptoms didn’t matter or didn’t exist.

BrynGlas profile image
BrynGlas in reply to kikiweight

I think we have that already though. We have lists of Signs and Symptoms a mile long, I find another thing that could be another thyroid symptom every other week it seems.

There are piles of hypothyroid books in my house 6 feet high. I read and research every book that I hear of and pick up every pamphlet too.

These things are on here or on the ThyroidUK site. I could begin to start selling thyroid books for a living at this rate. I have 4 new books waiting to be devoured here again.

You have to accept that what suits one will not suit another. No one can tell us what amount of either T3, Levo, or anything else (can we take a tablet of TSH can anyone tell me?) we might need. There will always be people who don't fit the hole we made for them and trial and error are definately needed for thyroid patients

Supplements, there is tons of info on this forum, or on the TUK site and all over the net. Likewise dietary concerns, are we keeping our head up in that respect?

But it all takes time. No one talking to a lady on a chat line, who might be lovely and may make you think happy thoughts again. But how much info would have sunk in after you put down the receiver? I would have forgotten 90% of it half an hour later, I know that.

At least on a Forum you can save the message or read it again later, or ask again if you haven't quite got engraved in our brain, even print it out if you prefer.

It is just another way of getting the information you need, it will suit some and will not suit others. More choice is good, but I don't think it will be anything other than a ThyroidUK chat line. If I am wrong, I apologise in advance.

BrynGlas profile image
BrynGlas in reply to kikiweight

How about setting one up kikiweight? On here or elsewhere. Facebook etc

kikiweight profile image
kikiweight in reply to BrynGlas

Hi, I don’t think I was clear. I didn’t mean that lists of hypo or hyper symptoms don’t exist in the world. There are many. But they don’t seem to be used as a diagnostic tool by medical professionals to diagnose and prescribe meds. They might note the symptoms in passing, but then most doctors move to the almighty TSH and blood tests. And that brings many of us to square one. I finally found a doctor who had created his own list of symptoms to help diagnose me, and he prescribed based on those. But it took me over 6 doctors to find him. And he’s retiring of course. 🙄

BrynGlas profile image
BrynGlas in reply to kikiweight

Sorry if I didn't understand.

Yes I see what you mean now. The problem with Throid symptoms is they only seem to be taken into account at GP level. Once you get the diagnosis, signs and symptoms seem to be ignored.

We don't seem to get much of 'Do you feel any better this week?' do we?

The next step is to get NHS to prescribe T3 or WDT not just T4! I think they might be changing the law in Scotland to make that happen. That will transform many lives for those struggling with hypothyroidism.

BrynGlas profile image
BrynGlas in reply to Hypohappy

I watched a debate/meeting or whatever it was to discuss the Levo/T3/NDT issues and I was impressed with how they all responded to the thyroid conundrum. I hope they do start prescribing it in Scotland, it might make it easier to get past the rest of the UK's problem with thyroid treatment.

BrynGlas profile image
BrynGlas in reply to BrynGlas

Sorry, I evidently forgot tell you that the meeting was in the Scottish equivalent to the House of Commons, in a much smaller meeting room. It was the elected MP's who surprised me I was pleasantly surprised.

I wonder if there has been much talk of Thyroid between our own elected parliamentarians! Apart from the law court's recent sucess in reducing the cost ofT3, for which I will always be very thankful.

Though mine are still cheaper!!!

Maybe years ago, but mostly I know what I am doing now

Yes, it would be most helpful especially for people like me who are not good with computers and to be able to talk to a someone

It very much depends on the quality of the help and advice. If it's of the standard offered by my GP, I think I'd be better off without it as it's been depressingly misleading.

BrynGlas profile image
BrynGlas in reply to DandyThyro

But it would be a ThyroidUK helpline. So I am sure it would be great, with well trained operators, if that is the correct term.

If Lyn - the founder of ThyroidUK wants to do it she would make a good job of it. None of your duff GP's nonsense here I am sure.

Some of us are able to find out what we need, with help from this forum and advocate for ourselves, but there are some who need a voice on the end of a phone a guide and a reassurance. Many have never questioned anything the medical profession has told them and had need to. I was one of those for my first 30 odd years. So we need to support those who need it - plain and simple - because getting more people well strengthens the message that many GPs and many Endos are ‘working off the wrong script’. They are keeping people ill by over reliance on an incomplete thyroid blood panel, ignoring patient symptoms AND giving people antidepressants to dampen the psychological effects of their health conditions being mismanaged (by said GPs).

It would help but only if the advice is as good as this site.

👍👍👍

Excellent idea and totally complimentary to the blog.

I think it could be helpful to give guidance on treatment or suggest what to do if you can't get the treatment you need and also to find information on finding information on the forum.

I was diagnosed over 20 years ago with Hashimoto's Thyroiditis soon after the diagnosis I moved to another AHA and GP practice. I was seriously ignorant regarding my condition and no help, advice, or support was offered by GPs. However, I responded well with prescribed Levothyroxine, and most symptoms except seriously overheating diminished.

For many years I was functioning more or less as I had before diagnosis including regular exercise until I gave up smoking. I informed GP that my symptoms had returned plus huge weight gain within the first 4 weeks of ceasing to smoke, but nothing was done.

14 years later and desperate for help with my condition it was information given from Thyroid UK and HealthUnlocked that finally persuaded a Locum at GPs to increase my Levo for 8 weeks trial. I still overheat and have seriously swelling from my throat up causing breathing and swallowing problems which have worsened.

Without that help and knowledge imparted by more knowledgeable people than myself, this wouldn't have happened. Especially as one supporter sent me information from NHS England regarding medication dosage levels and TSH range required if already being treated

If I had this knowledge sooner I think that I would have had help earlier on in my condition.