Struggling to get diagnosis: Hi, I've been unwell... - Thyroid UK

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Struggling to get diagnosis

TrainWreck59 profile image
104 Replies

Hi,

I've been unwell and symptomatic for 3-4 years. Doctors have been continually and repeatedly dismissive, putting it down to menopause, viruses etc. Finally, a few weeks back, a GP felt my neck glands and thought it would be prudent to send me for a thyroid ultrasound.

Fast forward, ultrasound came back abnormal, with both lobes enlarged, one nodule measuring 30mm, numerous nodules have bright specks. Been graded U3. I have been put on the 2 week pathway rule, and have consultant appt with ENT (why not endocrinologist?!) next week, along with FNA biopsy.

Had some bloods done last week, results as follows:

Serum TSH Level: 2.72 miu/L (0.34 - 5.6)

Test came back 'normal'. GP note states 'no further action'.

TPO Antibody: Thyroid Peroxidase Antibody 265.3 iu/mL (0.0 - 9.0) - above high reference limit.

Test came back 'abnormal, but expected'. GP note states 'what you need to do: other (recent thyroiditis pic on scan, been referred').

Full Blood Count: Red Blood Cell Count: 4.97 10*12/L (3.8 - 4.9) - above high reference limit. Also states underneath platelet count - observation 208 10*9/L (150.0 - 450.0 'Occasional Reactive Lymphocytes'.

Test came back 'satisfactory'.

Had appt with GP yesterday. Explained how ill I feel. She insisted everything was fine, and to wait to see consultant. I asked about levothyroxine, she said I would definitely NOT be put on that, as my TSH level was normal! I told her I felt I was in limbo, so many symptoms and ailments that I've suffered for 4 years or so, with no resolution, but she was dismissive and quite clearly keen to see the back of me.

I thought that the urgency of the ultrasound and biopsy might indicate malignancy of nodules, but from speaking with the GP yesterday, she said she did not think that was the case. Then what is it I have??!

Although I'm not new to the symptoms, I am definitely new to all the terminology and find it all a bit overwhelming. I have no idea what the blood results mean.

Is there anything I should be asking the ENT consultant next week? Anything I should not be consuming, or doing differently?

Any advice would be greatly appreciated, I feel really lost.

Thank you for reading.

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104 Replies
SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Was most recent test done early morning?

This gives highest TSH

Just testing TSH is completely inadequate but frequently all NHS is testing

TPO Antibody: Thyroid Peroxidase Antibody 265.3 iu/mL (0.0 - 9.0) - above high reference limit.

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Low vitamin levels highly likely with Hashimoto’s

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

VERY important to test TSH, Ft4 and Ft3 together

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

TrainWreck59 profile image
TrainWreck59 in reply toSlowDragon

Hi, blood test was done at 10.50am 😞

If I order the medicheck thyroid tests this weekend, when will it likely arrive (Xmas post etc)? How long do they take to send? Would it be best to wait to purchase it after Xmas, as I see that if I ordered it now, and it arrived next week, the next available Mon/Tues for testing would fall on 23rd/24th Dec (not ideal for sending kit back in post). What do you recommend please?

Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toTrainWreck59

I would order kit now

But don’t do test until after New Year

TrainWreck59 profile image
TrainWreck59 in reply toSlowDragon

Thank you 🙂

Chriskisby profile image
Chriskisby in reply toSlowDragon

In my experience GPs totally ignore private blood tests! But then “our” GPs are totally dire and uninterested.

SlowDragon profile image
SlowDragonAdministrator in reply toChriskisby

But you can action low vitamin levels yourself and check antibodies

This then frequently enables you to get diagnosed or to get dose increase in Levo because TSH becomes more responsive

If high thyroid antibodies then trialing strictly gluten free and/or dairy free are always worth trying

Personally i never made much progress in 20 plus years on just NHS testing …..on 125mcg levothyroxine

Joined here in 2014-15 ….got private testing saw I still had extremely high TPO and TG antibodies, high Ft4 but low Ft3 and low vitamin levels

I test vitamin levels at least annually and test TSH, Ft4 and Ft3 after any dose change

Now strictly gluten free and dairy free, all vitamins maintained at OPTIMAL Levels and T3 prescribed alongside levothyroxine on NHS

Always same brands Levo (Vencamil) and T3 (Teva) - both lactose free

…..TPO antibodies now below range and TG antibodies continue to reduce

gluten free since 2016 and dairy free since 2022. Both have given significant improvement and I would never go back

TrainWreck59 profile image
TrainWreck59 in reply toSlowDragon

I'm going to sound really thick here, but being a newbie to all this, what's the difference between Levo and T3 please?

SlowDragon profile image
SlowDragonAdministrator in reply toTrainWreck59

A normal working thyroid makes 80-90% T4 (storage thyroid hormone with 4 atoms of iodine)

And 10-20% T3 - active hormone - with 3 atoms of iodine

Ft4 = Free T4 - meaning it’s free and not bound and available for use

Storage hormone Ft4 has to be converted in cells to produce active hormone Ft3 before it can be used

For good conversion of Ft4 to Ft3 it’s important to have good vitamin levels

Low thyroid levels, especially low Ft3 tends to result in lower stomach acid, this results in poor nutrient absorption and low vitamin levels as direct result

Many thyroid patients need to supplement vitamin D, separate magnesium and separate vitamin B complex to maintain good levels

Some people initially need separate B12 too

And some struggle to maintain good iron/ferritin

Levo is T4 and the standard replacement hormone offered

About 10-20% of thyroid patients may eventually need small dose T3 added alongside Levo if Ft3 remains low with high Ft4 and good vitamin levels

Or some people manage fine for years on just levothyroxine, but conversion may get worse post menopause

Vitamin levels tend to reduce as we get older too so it becomes more important to test and maintain good vitamin levels

TrainWreck59 profile image
TrainWreck59 in reply toSlowDragon

You're so good at this! There are some fab teachers on here! Thank you.

SlowDragon profile image
SlowDragonAdministrator

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

More interesting Chinese research on Hashimoto’s and leaky gut

nature.com/articles/s41598-...

TrainWreck59 profile image
TrainWreck59

Also, would somebody please be able to advise how to send private messages? Would like to contact a couple of members that seem to have had similar experiences, but although I can write the messages, the 'send' button is permanently greyed out, so it won't allow me to send them! Any ideas please?? What am I doing wrong?!!

pennyannie profile image
pennyannie in reply toTrainWreck59

Hey there and welcome -

Just press on the person's profile which sits alongside their name in any post they have made -you are then on their Profile page and can read all they have ever written on the forum -

where there is the facility to press the Chat icon :

You receive these Private messages through the ' Chat ' icon which looks like a paper plane and lights up when there i sa message for you on a Private screen - shared by just you and the other forum member.

TrainWreck59 profile image
TrainWreck59 in reply topennyannie

Thank you, I've tried this, the 'send' button is permanently greyed out, it won't let me send 😞

pennyannie profile image
pennyannie in reply toTrainWreck59

I've sent you a PM - has the Chat Icon lit up - if not just go in and see if my message has woken up your connection:

TrainWreck59 profile image
TrainWreck59 in reply topennyannie

I've received your private message, but can't reply - it's still greyed out 😞

pennyannie profile image
pennyannie in reply toTrainWreck59

Oh - I've no idea - sorry :

pacific-paradise profile image
pacific-paradise in reply toTrainWreck59

you need to start writing , once you do that the reply button lights up.

TrainWreck59 profile image
TrainWreck59 in reply topacific-paradise

It didn't, that's the problem

SlowDragon profile image
SlowDragonAdministrator in reply toTrainWreck59

You can add a reply here and add a members name including an @ in front of name

That will alert the member and they may reply

Eg TrainWreck59

TrainWreck59 profile image
TrainWreck59 in reply toSlowDragon

Thank you, but I am unable to send private messages. The 'send' button is permanently greyed out. Can you help at all please?

pennyannie profile image
pennyannie in reply toTrainWreck59

Go back to your Profile Screen and instead of pressing Chat - press Report - the third Icon in this section -

as this sounds like a technical issue your end :

TrainWreck59 profile image
TrainWreck59 in reply topennyannie

I only have these 4 options in my profile screen: About - Posts - Replies - Connections

I tried clicking 'report' on the private message you sent me (there was an option to click it within your message), but nothing happened 😞

pennyannie profile image
pennyannie in reply toTrainWreck59

OK - I don't think I've other guesses left :

TrainWreck59 profile image
TrainWreck59 in reply topennyannie

Never mind, I appreciate you trying 🙂

SlowDragon profile image
SlowDragonAdministrator in reply toTrainWreck59

Contact support

They might not answer until Monday

HealthUnlocked Support

TrainWreck59 profile image
TrainWreck59 in reply toSlowDragon

Ok, thank you.

pennyannie profile image
pennyannie in reply toTrainWreck59

I've just sent a message to the Support / Help Desk as well -

but we may not get the PM section sorted until Monday.

pennyannie profile image
pennyannie in reply topennyannie

Under Menu - at the far end of the option bar - where Alert and Chat icons sit - there is a Get Help option - it's best coming from your end - rather than mine :

TrainWreck59 profile image
TrainWreck59 in reply topennyannie

I've done this, thank you so much 🙂

pennyannie profile image
pennyannie in reply toTrainWreck59

Well that was a learning curve for me as well as you - hopefully it will get sorted -

we can all read all that is being written - so don't get further confused reading some of my replies as I was bit all over the place looking for answers !!

TrainWreck59 profile image
TrainWreck59 in reply topennyannie

😁

suwinter profile image
suwinter in reply toTrainWreck59

Are you using a tablet, phone or desktop? If tablet or phone, which make?

TrainWreck59 profile image
TrainWreck59 in reply tosuwinter

Phone, Motorola.

suwinter profile image
suwinter in reply toTrainWreck59

So sorry I can’t help as never used a Motorola.

greygoose profile image
greygoose

Hi TrainWreck59, welcome to the forum. :)

Sorry to say you've come up against the famous medical wall of ignorance where thyroid is concerned.

The only reason it says 'normal' on your results is because the result is within the so-called 'normal' range. And what doctors don't understand is that that does not automatically make it 'normal'. The ranges are much too wide. A truly 'normal' (euthyroid) TSH would be around 1. Over 2 shows that your thyroid is struggling to make enough hormone for your needs, so not surprising you have symptoms and don't feel well. That said, as SlowDragon has mentioned, it does depend on the time of the blood draw. TSH is at its highest before 9 am and drops sharply after that until midday, when it will be at its lowest. It always amazes me that doctors don't know that - or pretend not to - and insist the result will be the same all through the day. And this is just one reason that the TSH is a poor indicator of thyroid status and should never be used alone to diagnose or treat hypo. You need all three readings to get the full picture, and they should be interpreted in conjunction with each other.

Also, doctors insist that the TSH should be over 10 before they can diagnose, when in fact, technically, you are hypo when it reaches 3.

Plus, you have antibodies which indicates you have Hashi's - Autoimmune Thyroiditis - which means things are just going to get worse as the disease slowly destroys your thyroid. Doctors do not know the significance of high antibodies.

So, no, everything is not fine. And she is totally wrong about not being put on levo. Eventually you will have to be in order to survive. But it is perhaps not strictly necessary right now. In any case, you would never find a doctor that would diagnose until the TSH at least goes over-range.

So, that's what you have: Hashi's. And people usually have nodules of some sort with Hashi's. Whether or not they are malignant is another question, but your GP is unlikely to know anything about that. You do need to see the consultant. But the majority of nodules are totally harmless and are not the cause of your symptoms. The cause of your symptoms is low levels of thyroid hormones, but as they haven't tested them, we can't know what they are. So, that's the most important question you need to ask: please will you test my FT4 and FT3?

The terminology can be confusing in the beginning, but you'll soon get used to it. And if you have any questions you can ask them on here. There will always be someone to answer. x

TrainWreck59 profile image
TrainWreck59 in reply togreygoose

Oh my goodness, I am so thankful for your response, it really helps. I have been tying myself up in knots since the ultrasound, and the GP's attitude yesterday just left me absolutely exhausted and crestfallen. I am so thankful to have found this site. I have a feeling they're going to want to whip my thyroid out though, and I'm not sure that's the answer right now...

greygoose profile image
greygoose in reply toTrainWreck59

Yes, the GP's attitude must have been a shock. You expect help from doctors, but these days, they rarely seem to give it. I often wonder what the hell they think they're there for!

But where thyroid is concerned, they just don't get the training they need to be effective. They honestly know next to nothing about it. Nor do they know the first thing about nutrients, and only have half a clue how to interpret blood test results. We have to search long and hard to find one that knows what they're talking about, and during that time, we learn more about it than they'll ever know! That gives us the power to stand up to them and assert our claims to decent treatment.

As to whether or not they'll want to take your thyroid out, depends on what the ultrasound shows. If it really isn't clear whether you have cancer or not, and they suspect that you have, they might want to take it out now, or just wait and see. If it is cancerous, it'll probably be very slow growing. But it depends on the doctor. On the other hand, if they determine that it is benign then there's no reason to take it out unless the nodule is do large it affects your breathing or swallowing. But why do you think that might not be the answer right now? How are things likely to be different in the future?

TrainWreck59 profile image
TrainWreck59 in reply togreygoose

I think I have a long, hard slog ahead with all this, judging by many people's experiences on this and other forums relating to thyroids. My swallowing's ok, but my breathing can be a bit intermittent in terms of struggling to get a decent intake of breath. I've felt like there's been an elephant sitting on my chest for years, and been completely dismissed by doctors...the doctor yesterday asked if it could be related to anxiety! But that's why I think they might want to take it out if the next ultrasound and biopsy determine large nodules, maybe because it's the easier option for them???

I have no faith or confidence in doctors/surgeons, and my worry is that I'll continue to experience problems even if they do take it out, albeit possibly of a slightly different nature. I'm concerned it will replace one set of ailments with another. And they seem to take the thyroid out even if growths are benign. I don't know, I feel confused and terrified to be honest 😬

And I also worry that even if I arm myself with information and informed decisions, how do I know the doctors will take it on board or even accept blood results from elsewhere etc? They might refuse to engage with alternative information. I've read your own experiences, and I'm utterly appalled. Seems like doctors are autonomous...

greygoose profile image
greygoose in reply toTrainWreck59

Well, maybe you'll have a long, hard slog, and maybe you won't. It all depends on the doctors you come across. They're all different, just like patients. And although your GP is obviously a dead loss, that doesn't mean they all are.

As you describe it, your breathing problems sound more like symptoms of low thyroid than an over-large nodule. I think most of us have had breathing problems like that. So, that doesn't sound like a reason for removing your thyroid.

Doctors often do remove bits of bodies because it's easier for them, rather than the patient, but I don't think that applies in this case. They sometimes remove thyroids from patients who are hyperthyroid, because they think - even though they're wrong - that it's easier to treat a hypo patient than a hyper one, and it gets one more patient off the endo's books and returned to GP care. (So, if you were going to have your thyroid removed I would advise you to change GPs!) But I don't think they would because of a small, benign nodule.

But, in any case, you have Hashi's, so your thyroid is going to become obsolete anyway, I'm afraid. That's the nature of the disease. Obviously, if they remove your thyroid, you will become completely dependent on exogneous thyroid hormone, but you will eventually, anyway. And, of course, that is where the problems arise because very few doctors understand the thyroid well enough to be able to treat hypo. Which is why it's essential that YOU know. Remember, your treatment should be a joint, informed decision. Too many doctors are used to ignorant patients that just do as they're told because they don't know anything about their disease. If you show them that you do know how it works, in my experience, you get treated better. And your doctor isn't there to dictate to you. S/he is there to advise you but there's no law that says you have to take their advice. You can always say no.

For me, it's been a long learning experience over many years. In the beginning I knew nothing, of course. But I slowly realised that neither did they! I learnt and I dictated my terms. If they wouldn't play ball, I moved on.

And, if all else fails, you can always self-treat. LIke I do, because it's so much easier.

TrainWreck59 profile image
TrainWreck59 in reply togreygoose

Thank you. You are so right, it's all about me learning from scratch as I go along. Weirdly, I'm somewhat relieved to learn that the breathing issues aren't necessarily related to the nodules wrapping themselves around my trachea (I had all kinds of awful thoughts surrounding this!), and that it could be related to a multitude of other thyroid related issues. Obviously it's not optimal that my thyroid is ultimately failing, but at least through this forum I have an idea of what's going on with my body, whereas before yesterday, I literally had no clue, as GP's seems so backwards in coming forwards. Thank you so much for your input, it's invaluable 🙂

greygoose profile image
greygoose in reply toTrainWreck59

You're welcome. :)

Sparklingsunshine profile image
Sparklingsunshine in reply toTrainWreck59

Ahhh the good old anxiety excuse, the bane of our lives and the holy grail for incompetent, lazy doctors. If all else fails blaming the patient for being anxious is a great catch all.

In summer 2023 I developed nasty chest pain and difficulty breathing. I had the paramedics sent out and two trips to A&E. I was dismissed with heartburn and told to take antacids. Once they decided it wasnt a cardiac arrest and I wasnt in imminent danger of death they really couldn't care less.

However symptoms persisted to the point I couldnt lay down due to the pain and in the end I got to see a cardiologist who performed an Echocardiogram and I had acute pericarditis. Not life threatening but extremely painful. It makes you wonder how many genuine conditions are missed.

TrainWreck59 profile image
TrainWreck59 in reply toSparklingsunshine

Oh my goodness, how awful for you. I'd like to say I'm surprised, but I'm sadly not 😞

FoggyThinker profile image
FoggyThinker in reply togreygoose

In any case, you would never find a doctor that would diagnose until the TSH at least goes over-range. May I politely point out, while that's true of NHS GPs, a private Thyroid specialist might be different? Splitting hairs I know but it may be important for TrainWreck59 (and I'm replying to greygoose but the comments are really for TrainWreck59 ) FWIW I'd say your current plan is correct - do your own testing and see what the ENT consult brings - but knowing that if circumstances allow, and you don't get anywhere with NHS, you could get help privately (not cheap but not as expensive as I thought) may bring some hope, and that's a big deal. Private GPs aren't necessarily perfect either but if you can get the ball rolling with a private prescription it does open up other avenues.

I think it's a case of keep calm and carry on for now; hopefully you feel that you're making progress and have a source of help now, in this forum, that's a big deal. I felt very desperate when in a similar situation but getting help from here has really made all the difference, I'm not there yet but very much better.

TrainWreck59 profile image
TrainWreck59 in reply toFoggyThinker

Hi, yes, I now realise that there's a strong possibility I may have to go down the private route to get the help that I need. I am not going to do my own testing until the new year, for fear of postal delays etc. Incidentally, do most people on here use Medichecks??! Looked them up on Trust Pilot and some of the reviews were a little worrying! Thank you so much for your input and advice. Glad to hear you're beginning to feel better 🙂

FoggyThinker profile image
FoggyThinker in reply toTrainWreck59

Thanks :) yes, I'd leave it til the new year. It may very well be that you can get treatment based on your ultrasound so all's not lost yet. But it's nice knowing you have several options.

I use medichecks and I think lots of others do too but not all. I've never had a problem and probably never reviewed medichecks so that's probably part of what you're seeing, people are much more likely to review when they have a problem! As Greygoose suggested, might be worth starting a new post to ask the question.

Not sure if slowdragon mentioned that the advanced thyroid test also checks the important vitamins etc, and that if you're taking a multivit or multi b supplement that contains biotin, you should stop taking it for a spell before the test, although how long and how much difference it really makes is open to question!

Medichecks offer a GP review of your test but this is based on the NHS levels we know are flawed. You can skip this and get your results a little quicker, then make a new post on the forum to ask for help interpreting. Very best of luck and let us know how you get on?

TrainWreck59 profile image
TrainWreck59 in reply toFoggyThinker

Thank you 🙂

Sparklingsunshine profile image
Sparklingsunshine in reply toTrainWreck59

I use Monitor My Health, they do a basic thyroid panel,its reasonably priced. They test TSH, FT4 and FT3. Not sure about antibodies but once you've confirmed yours are elevated ie Hashis, there's nothing to be gained from continuously checking them anyway.

They have the advantage of being an NHS hospital lab which might appease a sceptical doctor. Some doctors get sniffy about us having private tests.

TrainWreck59 profile image
TrainWreck59 in reply toSparklingsunshine

Yes, that's what I was worried about with my GP, that they might not take too kindly to alternative tests. Thanks for that, I'll look into it 🙂

Sparklingsunshine profile image
Sparklingsunshine in reply toFoggyThinker

It depends on the GP I would say, some are more amenable than others, sometimes a TSH of below 10 but with high antibodies can initiate treatment. Or below range FT4/3.

in reply togreygoose

Hi Greygoose. I was diagnosed in January 2012 with a TSH of just over 5.

I had been feeling unwell for a couple of years and put it down to the menopause. Over Christmas, I went to stay with my Godmother who was in her 90's and despite being 40 years younger than her, I struggled to keep up and she recognised that I was clearly not well. At times, I struggled to walk. As I left, she asked me to have my thyroid tested. I did, with a TSH of just over 5.

I'm shocked to see you write "doctors insist that the TSH should be over 10 before they can diagnose..." Is this the current cut off point? I'd have been hospitalised by then, judging on how ill I was with a TSH of around 5.

tattybogle profile image
tattybogle in reply to

Summerdark ,

10 is the point at which treatment is 'recommended' (by NHS) , even if the patient has no symptoms of hypo .

for 'over-range but below 10' NHS guidelines say GP's 'can consider' treatment if symptoms of hypothyroidism are causing significant problems in daily life .

in reply totattybogle

That has changed since I was diagnosed. In 2012 the cut off was something like 5.5 and treatment could be considered if over 3 with symptoms

in reply totattybogle

Thank you for answering the question and explaining what the current guidelines are. This is awful, when we know they don't test T4 or T3 as a general rule.

greygoose profile image
greygoose in reply to

Sorry if that shocked you but if you've been reading on here for any length of time you must surely have come across that before. We read it all the time. A lot of them don't believe you can have symptoms before it reaches that level. But as very few of them understand what the symptoms are or what exactly causes them, what they 'believe' doesn't hold much water. I believe it's just a ruse to avoid diagnosing as many people as possible. But whatever, it's been going on for as long as I've been on this forum, and that's quite a long time.

in reply togreygoose

No I hadn't come across it before or I would not have asked/commented! I'm not in the habit of making things up.

I joined Health Unlocked for the Couch to 5k and have only joined this group very recently, so yes, 10 being the cut off point is new to me.

In 2012 the cut off was something like 5.5 and treatment could be considered if over 3 with symptoms.

greygoose profile image
greygoose in reply to

By 'cut off point', do you mean the top of the range? Because that has nothing to do with it. Ranges haven't changed, the top is still between 4 and 6, depending on the lab. But doctors ignore the ranges when it suits them. And we hypos cost them money, so they want as few of us on their books as possible.

in reply togreygoose

I mean the point at which hypothyroidism is diagnosed.

In 2012, a TSH level of just over 5 was typically recognised as the TSH level where most GPs prescribed Levothyroxine as far as I'm aware.

Previously, many years ago, the recognised TSH level was 3 at which point levothyroxine would be prescribed, from what I have read elsewhere.

I've looked on the NHS website and they do now refer to a TSH of 10 as being the level and this has changed since I was diagnosed in 2012.

Yes, I am aware of the politics going on in the NHS to avoid taking new hypos on.

Today is the first time I have become aware of this. I'm sent the summary email each week and I occasionally dip in, usually onto the couch to 5K posts. I have only been a member on this site since late 2023, and no, I hadn't seen the TSH level of 10 being the point at which people are now given levothyroxine referred to before, so to be told "surely you realise..." came across as condescending. I really don't think responses require a "surely you realise" sort of comment.

Like most people on Health Unlocked, and there must be many thousands, I rarely come onto this site and this was news to me.

greygoose profile image
greygoose in reply to

I didn't say 'surely you realise' but whatever. A lot of people do come on to the TUK forum to read and learn and ask questions. So, I assume that anyone posting on here has been reading. My bad. But I'm not going to discuss this any further.

in reply togreygoose

OK ; "you must surely have come across that before" to be pedantic, is condescending. I have been reading, but I don't live on Health Unlocked. Yes, it was your bad.

The person who replied to my comment first, could do so without being condescending or jumping to conclusions about what I must surely have come across before. It's a shame you couldn't.

I won't be commenting again, and if you are representative of the type of "support" and communication skills I can expect in this area of Health Unlocked, I won't be staying here.

humanbean profile image
humanbean

My swallowing's ok, but my breathing can be a bit intermittent in terms of struggling to get a decent intake of breath. I've felt like there's been an elephant sitting on my chest for years, and been completely dismissed by doctors...the doctor yesterday asked if it could be related to anxiety!

Very low iron can cause shortness of breath. Hypothyroidism can cause very low levels of nutrients in a lot of cases because it reduces levels of stomach acid, which in turn reduces absorption of nutrients from your diet.

Some lists of symptoms you might find helpful :

Symptoms of iron deficiency : thewayup.com/newsletters/08...

Symptoms of Vitamin B12 deficiency : b12deficiency.info/signs-an...

Symptoms of Folate deficiency : b12deficiency.info/folate-b...

Symptoms of Vitamin D deficiency : medicinenet.com/vitamin_d_d...

TrainWreck59 profile image
TrainWreck59 in reply tohumanbean

Wow, thanks so much for this, and sending those links. I had no idea vitamins played such a vital role, and the lack of them could very well be contributing to some of my symptoms,including breathing issues. Thank you for your input 🙂

mrskiki profile image
mrskiki in reply toTrainWreck59

I was surprised to find My iron, folate and vitamin D low in range, when I did these tests, as I took my so called women’s multivitamins. I have switched to better individual vitamins now on advice of this forum and levels slowly climbed back up to more optimal levels.

Insomania profile image
Insomania

Medical gaslighting, in the news recently.

Have a read of my profile, I was in a similar place in 2021 with enlarged thyroid on 2ww. Multitude of symptoms really affecting my life. Low iron, vitD, vitB12.

I didn’t have high TPO or raised TSH though, my TSH was low.

The only way I could get thyroid treatment was privately. NHS treat my iron, heavy periods, perimenopause, insomnia. Would’ve given me anti-depressants too.

TrainWreck59 profile image
TrainWreck59 in reply toInsomania

Hi, I read your profile. Learning so much just by being on here! I'm sorry you've gone through all that with no diagnosis. Hopefully you can continue on your own path of being treated, with what works for you. We shouldn't have to jump through hoops like this though 😞

Catlover1981 profile image
Catlover1981

Hi I am sorry your GP weren't helpful. My old GP I once wrote a list of my symptoms and he just snatched the list off me and the next time I went to see him about hypothyroid symptoms because of my mum telling me to come and 2 more of my cousins being diagnosed with it and aunties and he was concerned and my blood test did come back TSH 14 and he started me on Levothyroxine. I then changed GP and 14 years later he loves my list of questions.

I was shocked to see that to get a diagnosis of hypothyroidism in the UK can be hard. I wonder if it is because of the free prescriptions after diagnosis. It sounds like I am really lucky with my GP

TrainWreck59 profile image
TrainWreck59 in reply toCatlover1981

Hi, I did the same on Friday...took a list of all my symptoms, but the GP was in such a hurry and so short with me, that I felt I didn't even have time to unfold it and look at it, never mind reel them off! I'm so glad to hear that it finally worked out for you, and that you now have a good, understanding GP 🙂

annnsandell profile image
annnsandell

I appreciate that you are worried about your future treatment although, you are at a stage where any treatment should be beneficial. I have always found that departmental hospital consultants know their job, will explain and answer questions plus let you take someone with you if you feel that would be useful. The only problem would be how long you wait but have they referred you on a two-week cancer protocol? This might be a bit of a whirlwind, deep breaths.

There is no direct relationship between thyroid cancer and Hashimoto, have a look online to get a better understanding of the condition and what to expect. Take care.

TrainWreck59 profile image
TrainWreck59 in reply toannnsandell

Hi, yes, I was referred on 2 week wait rule, which made me worry about the possibility of malignancy. I have a FNA booked for Tuesday, but I've read many of them come back inconclusive, and then have to be repeated 😞. I just want next week out of the way so that I can enjoy Christmas until the new year when I suspect I might have a bit of a fight on my hands. Thank you for your response 🙂

annnsandell profile image
annnsandell in reply toTrainWreck59

Don't worry about the FNA test, it is much simpler than you might think. Yes, often inconclusive but they will look at other tests as well to come to a proper diagnosis.

serenfach profile image
serenfach in reply toTrainWreck59

The FNA is simple, quick and painless. I had to go to a hospital 30 miles away over some very high ground, and it was snowing when I got there. All I worried about was if I would get stuck driving back. I hardly noticed the FNA!

Many, many of us have been where you are now. Dismissed by GPs, and having to find a way to get the knowledge to fight back ourselves. Browse through the forum and learn by little bits. You will soon know more than your GP! Yes, it should not be like this, considering the number of people with wonky thyroids, but at the moment this is common what you have been through. Does not help, but be reassured that it will get better. Sending a hug.

TrainWreck59 profile image
TrainWreck59 in reply toserenfach

Thank you so much 🙂

Sparklingsunshine profile image
Sparklingsunshine in reply toTrainWreck59

I was referred on the 2 week pathway in 2020, I had breathing problems and swallowing issues, very unusual as I was very fit at the time. I had chest x ray and chest CT scan and was booked in for endoscopy. Thankfully all ok.

However my thyroid was flagged up as overt hypothyroid so it could very well have been connected. My GP explained they use the 2 week pathway, even if they dont necessarily think its cancer for speed. Otherwise you'll wait for months.

TrainWreck59 profile image
TrainWreck59 in reply toSparklingsunshine

That's reassuring to know, thank you 🙂

JaneChapple profile image
JaneChapple

Sorry to hesr this. I think you should change GP as she obviously doesn't have thyroid knowledge. Id also ask for a referral to Endocrinology but get the private blood tests done first as suggested.

Janexxx😊❤️

TrainWreck59 profile image
TrainWreck59 in reply toJaneChapple

Hi, I would definitely change if I felt I'd be in a better position elsewhere. Unfortunately, where I live, they all seem to be much of a muchness...in other words, pretty much hopeless. I was thinking the same thing about asking to be referred to an endocrinologist, but when I mentioned this to the GP, she said ENT deal with it initially, and that I may get referred to endocrinology at a later date. So, I'll see what happens in the next few weeks. Thank you for your response 🙂

TrainWreck59 profile image
TrainWreck59

Do most people on here recommend Medichecks for getting bloods done? Have read some rather worrying reviews on Trust Pilot for these online blood testing companies!! Would be keen to hear what people's experiences have been on here please to reassure me 🙂. Thanks in advance!

greygoose profile image
greygoose in reply toTrainWreck59

It's unlikely that many people are going to see this question, right at the end of a thread that is a few days old. You would be far better off starting a new thread and asking just that. More people will see it.

I believe an awful lot of people use Medichecks and are quite happy with them. But I have no personal experience of any of them because I don't live in the UK. I live in France where private testing doesn't exist! :(

CallMeSunny profile image
CallMeSunny in reply toTrainWreck59

I have used Medichecks, Blue Horizon and latterly, Lola. From my experience, I wouldn’t hesitate to recommend Lola. They are reasonably priced, the price shown includes a phlebotomist to your home to take the blood draw. I was kept informed at each stage, the website and email communications were all clearly laid out and easy to understand. All my tests were done on a Monday; Lola results arrived after 3 days , the others were 5-7 days…all were well woman tests which includes all the thyroid testing you need plus all vitamins you require…also hormone levels. I also didn’t have to wait longer for a GP report, plus it was a comprehensive, well laid out, easily understood document. Best of luck with your ongoing quest for better health.

TrainWreck59 profile image
TrainWreck59 in reply toCallMeSunny

Thank you for this, I will definitely look into it 🙂

TrainWreck59 profile image
TrainWreck59

@ Stills and Mkl44 - just to let you know that I've received your PM's, but unfortunately at the moment I cannot reply, as there seems to be some kind of technical glitch, whereby my 'send' button is permanently greyed out. Hopefully this will get sorted, as it's been reported to the help desk. Meanwhile, thank you both for your messages and kindness 🙂

greygoose profile image
greygoose in reply toTrainWreck59

I'm afraid you didn't do that quite right, so Stills and Mk144 will not be notified that you've mentioned them.

You cannot tag more than one person at a time. It has to be individual tags: Stills and Mkl44 . :)

TrainWreck59 profile image
TrainWreck59 in reply toTrainWreck59

Stills and Mkl44 just to let you know that I've received your PM's, but unfortunately at the moment I cannot reply, as there seems to be some kind of technical glitch, whereby my 'send' button is permanently greyed out. Hopefully this will get sorted, as it's been reported to the help desk. Meanwhile, thank you both for your messages and kindness 🙂

TrainWreck59 profile image
TrainWreck59

I'm afraid I have no idea how to tag someone on here. I tried pressing their profiles, but it didn't work! Beginning to think there are gremlins in my account, as the only thing I seem able to do is post 😁

pennyannie profile image
pennyannie in reply toTrainWreck59

To Tag in someone try typing @ directly before - no space - you start to type their name -

as you type each letter a drop down selection of potential members names pops up -

when you see who you are looking for - select and press from the drop down selection-

Their name should print out in blue and they get notified they have been tagged :

TrainWreck59 profile image
TrainWreck59 in reply topennyannie

Thank you, think I've done it now. Still learning my way around 😁

pennyannie profile image
pennyannie in reply toTrainWreck59

Who isn't - !!

WaffleTime profile image
WaffleTime

TrainWreck59, i’m so sorry to hear you’re going through this. I understand your frustration, I’ve unwell for almost 2 years with low level hormones and high cortisol. Doctors have been dismissive to me too. Maybe a lack of curiosity or desire to get to the root cause, and just a lack of care that I get better which is so disappointing. Wishing you peace, joy, and healing. Merry Christmas!

TrainWreck59 profile image
TrainWreck59 in reply toWaffleTime

Such a lovely message, and so many lovely, caring, well-meaning folk on this forum, it almost makes up for the sheer incompetence and lack of care that we are supposed to be able to put our trust into with the NHS. Thank you. Merry Christmas to you too, and I sincerely hope your own journey back to health improves with the new year 🙏

BlueKeith profile image
BlueKeith

looks like you will need levothyroxine eventually as your antibody levels are high and probably attacking your thyroid. I would get another test done privately. Gp’s are very reluctant to increase levothyroxine never mind administer it if your tsh is low. My gp was always reluctant until I got severe constipation then did another test to find my tsh was out of range. She now says I may need more than the 125mcg . I’m now feeling almost 100% . I feel more well at 50 than my 30s and 40s. Keep getting tested and keep going to doctors until you feel well again. Hope you find your cure.

TrainWreck59 profile image
TrainWreck59 in reply toBlueKeith

Yes, I'm wondering at what point they'll concede due to my high TPO, rather than just the TSH which is within 'normal' range. It's great to hear you're feeling better now, I guess it's all about being persistent and a bit of a thorn in their side.

BlueKeith profile image
BlueKeith

I’m feeling well now but before I had joint pain , constipation, tiredness and the worst one brain fog like dementia. I understand the frustration of it all especially trying to get through to the doctor. This site is helpful . Helped me. Good luck

CapnM profile image
CapnM

There is so much good content and advice here but it can be overwhelming though vital in the long term. I am a fan of Thyroid for Dummies, co-authored by a GP in the Cambridge area (Dr sarah brewer I think). It's so well written it's very easy to absorb, that is my best tip to read over Christmas if you want to feel like you are moving forward. Its not a long book, I think I read it in a day or two max.

​My other main advice for a Hashi newbie which took me a while to lock in is there is the autoimmune inflammation (and its consequences for your body) and the degraded thyroid performance as a result of that inflammation (and its consequences for your body), early in my journey I very much focused on levothyroxine which did help but it was switching focus (or priority) to the inflammation that made the biggest difference. I gave up gluten initially and didnt notice much difference, but when I tried it again 2 years later it made a hell of a difference and stopped many symptoms in their tracks so I realise its importance now. My point here mainly is that no GP or consultant is going to help you with the autoimmune inflammation as they have no tools to do so and thats very much your personal journey. For degraded thryroid all they can do is dispense hormone supplement but as referenced above they pretty much do it badly. My levo journey with the NHS was a joke really until I went round them. I hated them for it but have made my peace with it now.

Lastly you will read of my tips and thanks in the next month or so, my tips dont do too much at once it, try to work in a methodical and progressive manner and keep a health diary. changes to habit and dosing can have a multi week and month feedback look.

good luck.

TrainWreck59 profile image
TrainWreck59 in reply toCapnM

I am trying to cut out gluten, soy and sugar now. I ate a lot of soy products, so am going to miss that 🙁. Also bread and pasta are weaknesses of mine, so hunting for gluten free versions now. A health diary sounds like a good idea, I'll try that.

CapnM profile image
CapnM in reply toTrainWreck59

Well done for getting through my bad autocorrects. Best GF bread advice I got on here was buy the sliced, freeze and toast it. M&S do a nice small wholemeal bloomer. I quite like Genius too, multigrain bread and the white rolls of brioche now and again . My goal for next year is to to make my own as it's not fresh and trying to eat too much processed food .

Eddie83 profile image
Eddie83

Are you aware that there are foods which can produce an immunological response that results in Hashi's? This is esp. common with gluten, which can strip the intestinal villi and allow bad stuff into your bloodstream, provoking autoimmunity.

TrainWreck59 profile image
TrainWreck59 in reply toEddie83

Hi, thank you for this info. I did not know this, or I would not have consumed so much of it over the years ☹️. However, I am trying to do better now, and am only just learning about Hashi. The damage is obviously done (symptomatic for 3-4 years), so I'm not sure what good it will do me, but I have to persevere.

Eddie83 profile image
Eddie83 in reply toTrainWreck59

There are tests you can take to determine if you are sensitive to gluten. I am not up on state of the art in gluten testing, but I do recall that the TTG is one of the key tests. When I was diagnosed, the ND used the Gliadin Antibody test, but I do not think that is state of the art.

TrainWreck59 profile image
TrainWreck59 in reply toEddie83

I am UK based, so not sure what gluten tests we have here, but I will look into it. Thanks.

JerrysGirl3 profile image
JerrysGirl3

are you able to see an Endo? Find a good one.

TrainWreck59 profile image
TrainWreck59

Apparently they send you to ENT consultant first in my area?!?!? If I get no joy, I'll have to search privately for an endo.

CapnM profile image
CapnM in reply toTrainWreck59

Remembering there is something called patient choice. If you get a referral you can to request who you see.

TrainWreck59 profile image
TrainWreck59

Just wanted to update...I had my second ultrasound yesterday with a view to doing a FNA for my nodules. However, they didn't even bother doing the FNA in the end, as they were confident that there were no cancerous concerns, which was great news. They pretty much agreed I have Hashimoto's.

They are going to refer me to endocrinology, as my TPO antibody test was so high, and owing to all my symptoms. I'm guessing I may have rather a long wait for my initial appointment. What are other people's experiences of wait times (NHS) please for endo? Meanwhile, I feel like I've been left in limbo a bit, very symptomatic and not been offered levo or anything. GP completely disinterested.

I will get the private blood testing done after Xmas. Is there anything else I could/should be doing whilst I wait for my appointment? I've already cut out gluten, and don't consume dairy anyway. Trying to cut back on sugar and soya, too.

I realise this is just the beginning of my journey, and that I have many likely battles ahead, as have many of you experienced already. I appreciate everyone's input this far. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toTrainWreck59

Your best to write new post asking for suggestions

Get vitamin levels tested regularly and maintain at optimal levels

Retest thyroid levels including thyroid antibodies in 2-3 months

Meanwhile look at seeing endocrinologist privately

Waiting time on NHS is about a year or 18 months

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS

thyroiduk.org/contact-us/ge...

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