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'.
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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TrainWreck59
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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?
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
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
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
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
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?!!
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.
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 :
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 !!
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
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...
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?
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...
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.
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 🙂
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.
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.
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 🙂
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?
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.
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.
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.
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 🙂
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.
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.
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 😞
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
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 🙂
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.
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 🙂
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.
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.
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.
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.
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 🙂
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!
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!
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.
@ 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 🙂
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 😁
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!
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