At the end of June I noticed an asymmetric lump travelling up and down my throat when I swallowed - I saw it in the mirror. I called my GP and I was given a phone consultation with a nurse who suggested I text her a photograph. She said that it looked like my thyroid and told me to book in for non-urgent bloods, which I did, with a three week wait.
Thyroid made sense to me because I was struggling with deep fatigue, but I was anxious that I hadn’t been examined by a doctor and booked an appointment with a private GP because our local surgery is basically in collapse at the moment.
The private GP confirmed an enlarged thyroid and wrote to my surgery suggesting referral for an ultrasound, which is coming on up September 9th.
In the meantime, my blood test results came through. I’m sorry I don’t know the range from the lab but TSH was 0.82. T4 and T3 weren’t tested because TSH was ‘normal’.
I had a phone conversation with a doctor from the surgery and listed my increasing symptoms: jitteriness, anxiety, trouble sleeping, constant muscle pain, weakness, brain fog, inability to properly participate in domestic life or do my work due to deep fatigue, lack of focus (can’t even read a book), thirsty all of the time.
He was insistent that there was ‘no biochemical reason’ for me feeling like this and there was ‘probably no link’ between how I feel and my enlarged thyroid.
My thyroid swelling is getting worse, I’m feeling nauseous and having alarming incidents of vertigo where everything around me lurches and spins.
I resent being told that there is no physical reason for how I feel - I may be a menopausal woman but I’m not stupid, and the implication seemed to be that I shouldn’t waste his time asking questions about something that wasn’t a medical issue.
I have done what I can, I’m waiting for a Blue Horizon test kit to arrive so that I can find out my T4 and antibody levels, and I’m waiting for my ultrasound. But I’m feeling really sick and wondering why it’s so hard to be heard.
I’m posting because I’m feeling quite alarmed by the nausea and vertigo. Does anyone have any experience of this in the context of thyroid problems?
Many thanks if you’ve managed to get to the end of my rant!
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Nausea and dizziness can be hypo symptoms due to low B12 and low stomach acid. Are you getting your nutrients tested at the same time as your thyroid? It's always advisable.
The TSH isn’t sufficient, but because it’s in range the GP (& labs) automatically won’t agree to further testing. Getting a private test with FT4, FT3 & antibodies is definitely the best step to take.
Supplements containing high levels of biotin can skew test results. Check labels & avoid 1 week before draw. When you test do you test early in morning after fasting except water? This give highest TSH & lowest FT4. Doctor often think this is not revealing and don’t advise about this.
Do you remember what time your draw was?
The ultrasound scan will useful for detecting any nodules or any autoimmune damage.
I had a ultrasound for a one sided thyroid swelling, they did a fine needle aspirations and this was clear.
At the time I was told the thyroid function was normal. Just a benign nodule but it grew more & I started having swallowing issues so they repeated the scan & sent me to ENT. Looking back through records I discovered I had only previously had only ever had 1 previous thyroid function test which was 4 years before. It was abnormal. The recent test hadn’t been processed at all. I had had gradually rising levels & a suppressed TSH the entire time.
Hello, thank your for replying. I thought the TSH looked pretty low which would make sense of the symptoms I have which seem to mainly fit with an overactive thyroid. My original test was at 9.30am, after a cup of tea.Did they do your fine needle aspiration at the same time as your thyroid ultrasound, or was it a follow-up? Glad to hear yours came back all clear, and I hope you finally got the treatment you needed. Did you need surgery to deal with the swallowing issues or can the thyroid reduce in size without it?
I did have the FNA at first appointment, to save an additional appointment. I think if there’s time & staff they proceed. It was all painless and I went to work after. Odd part was when I was told gently bite end of tongue to minimise swallowing & movement.
On the subsequent scan (7 months later) even though the nodule had grown to 5cm they did not repeat a FNA.
During the ENT appointment just after the 2nd scan I had a naso endoscopy. I was told it wasn’t too squashed apparently. Not surgical. Once ENT decide something isn’t surgical they don’t do much & don’t do blood tests, they leave that up to endocrinology & GPs.
Earlier this year I had a referral for a new neck lump (non thyroid) this time the local hospital apparently blanket refuses all requests to scan neck lumps. I had to have an additional consult via ENT.
The scan showed a inflamed submandibular gland & radiologist didn’t want to do a FNA. I got the impression that if I had pressed he would have done one, now I think I should have pushed.
ENT were planning to rescan. I was suspicious that something had been noticed on scan and at the next appointment they would suggest a FNA but then they did a quick pre consult & discharged me saying all ok.
Your swelling might be fluid, mine was colloid/mixed. If they offer a FNA don’t hesitate. If they start by suggesting they don’t think one is really necessary, say no matter how low the likelihood of a problem you do want to rule out an issue.
The thing about TSH is that even IF it’s working “normally” it works by responding to thyroid levels and there’s always a degree of delay. If your levels are fluctuating & the TSH is lagging behind then it’s not a true picture. My TSH has stayed under range despite being euthyroid on carbimazole for 2 years.
Symptoms are not as straightforward as underactive vrs overactive there’s a wide & varied overlap. Your symptoms could indicate under active. Autoimmune thyroiditis can have phases of transient hyper ultimately under-active, TPO & TG antibodies will indicate autoimmune. If the FT4 & FT3 are high then testing TSI or TRab antibodies are good idea.
I don’t not have autoimmune antibodies my nodule is hyper functioning causing elevated rather than excessively high levels but I gained weight as I had an out of control appetite, zero energy & motivation, headaches. A resting heart rate of 80 and palpitations experienced as a sinking feeling in upper chest, & my once nice nails were lifting off their bed. All this had developed so gradually no one, included me, had noticed.
I began carbimazole 20mg daily to lower thyroid & propranolol for symptoms. 2 months later I had my endocrinologist appointment & they halved the carbimazole and stopped the propranolol. Propranolol should be tapered down slowly & doing it abruptly triggered migraines. GP prescribes it now purely as migraine prevention. Carbimazole dose has been adjusted a few times I currently take 7.5mg daily.
The Endocrinologist informed me radioactive iodine (RAI) to destroy thyroid was to be my treatment. Apart for sending a leaflet they evade answering any queries I have. Therefore I never signed the consent form & I’ll remain on anti thyroid until a complication arises.
ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels tend to lower TSH
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
I suffered a lot with terrifying vertigo and vomiting. I saw Dr P before he retired and I had a cortisol test and had treatment for adrenal issues before I started thyroid treatment. Changed my life. I still get this very occasionally but nothing like I used to - it was incredibly debilitating. There are many reasons for it, including inner ear issues… I found this video helped sometimes. m.youtube.com/watch?v=mQR6b...
So sorry to hear of all your symptoms. When you have your bloods done ask to have them check your blood calcium serum level as well as the other Thyroid bloods. You have 4 parathyroid glands situated on the back of your thyroid gland and this controls our calcium levels which in turn directly connected to our nervous system so Brain, heart, bones, kidney functions also muscle contraction. Some of your symptoms have similar symptoms to parathyroid diagnosis. But first things first get your blood results then you can go from there. Your not stupid you are methodical in your symptoms do not be fobbed off by even your GP or any other professional in the medical fraternity. All the best.
Firstly I can relate to how your feeling, I myself had much the same problem with my gp.. I started with jitters, sweating, fine tremors, total fatigue, some thirst, body pain, dizzy, consentration was so bad I'd lost weight, I felt like something was in my throat when I swollowed, I went back and forth(2017 before covid) to my gp, he kept insisting it was the menupause, I eventually made him take blood because I kept saying its in my neck I think something is wrong with my thyroid, he did TSH only and always told me it's in range, upshot fast forward to sep 2018 when my life consisted of me being bedridden most days, I'd again been to see the usless gp about 4 weeks previous and again he insisted my thyroid bloods were fine, I collapsed at home going to the toilet, my son then got me an emergency doctors appointment, I saw a completely different doctor who on seeing me diagnosed me there and then with hyperthyroidism (overactive thyroid) blood tests confirmed this the next day with a T3 of 24.3 and suppressed TSH.... Unfortunately i went in to thyroid storm was in hospital for 15 days 😭 I eventually lost my thyroid in 2019, and I blame all this on my incompetent gp who for some reason could not see all the signs of an overactive thyroid, and after requesting my medical records I have found at least 2 blood test on my TSH that say... Short suppressed, and an episode of thyroiditis, I was never informed of this and would never have known if I'd not requested my records, so do everything in your power to check your own health because I've found my gp just didn't want to know or care.. Good luck with your journey ♥️♥️😕
That is a terrible ordeal you went through. Yet, this same scenario takes place everyday. Incompetent doctors don't want to take the time to investigate, so they just wait till you break. Hope you're doing ok now.
First of all I am really sorry that you went through this. 😥
But on a separate note… if you haven’t already… REPORT THIS DOCTOR!
Report him to the surgery, report him anywhere else possible!
I think if anything can be achieved from malpractice situations as these is to force surgeries to re-train GPs in conditions like these and to go beyond the “all in range” business!
Well after another doctor in the surgery managed to Diagnose me I made a point of making an appointment with that awful doctor to see what he had to say on my diagnosis and it not being the menupause like he said for well over 12 months, firstly I said well, well doctor it's not the menupause is it? It was what I thought all along MY THYROID!!! He never answered and just turned to his computer and tapped away giving me another prescription for anti thyroid drugs, he never even had the decency to apologise for his mistake, also this surgery is his family run practice, although he is now divorced and its not a family run practice anymore he still runs the show😠 and doing the very same to me again this last year, in 2020 I started to feel very unwell again, it was not my thyroid medication as my levels were OK.. I was drinking way more and peeing loads had bad headaches, I started sweating bad and had shaking through out by body with bad bone pain, I noticed my calcium was raised on 2 blood tests, again he said "ho they are only mildly elevated nothing to worry about, I said NO.. You get them sent to the endocrinologist, upshot my parathyroid hormones were over range to on 2 occasions which the endocrinologist wrote saying it was probably primary hyperparathyroidism, I had all the scans, which showed ostiopeania in spine and neck, kidney stones, gal stones calcification in joints, I met all the criteria for surgery but because of covid the endocrinologist keep me in limbo giving me further blood tests then a 24 hour calcium urine test was not enough out put to Diagnose primary hyperparathyroidism, you don't use the 24 hour urine test as a diagnostic tool only the blood mine shows primary hyperparathyroidism now diagnosed by a parathyroid surgeon (private) in Oxford, but the NHS endocrinologist discharged me from there clinic😠.. My gp the usless one agreed with the endo in that I now don't have primary hyperparathyroidism, you couldn't make this up😠.. I wrote to my gp demanding I be see by an endocrinologist if not I will be contacting PALs... I have now got a referal to Hexham endocrinologist team but still have no date as yet, they have told me there is a waiting list, I'm now on the cancellation list,.. On anothrt note I have all my records (medical) and when I get this primary hyperparathyroidism sorted I will be looking in to the miss diagnosis of both the conditions one he missed (hyperthyroidism) (graves) and one ongoing (primary hyperparathyroidism) watch out doc I'm coming for you😠😠😠
I have no words really and not sure what to say and suggest 😔
Only that we are here for you! 😘
Keep fighting and pushing.
Is changing surgery an option? 😥🤔
I myself stayed with a toxic surgery for 6-7yrs as i was afraid to get to one who’s even worse…
Got a much better one and some doctor are fantastic.
Now there’s so many people moving into the area, a private company has taken over and a lot of things have changed 😔😔😔
It’s so hard to understand why some doctors can be so horrible.
I would still make a point to complain about this GP. I feel like based on this it could be considered malpractice especially if he hasn’t considered or better investigated the diagnosis even after you suggested it clearly to him more than once!
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