I was feeling so ill yesterday i went to A and E again. I showed them my private blood test, oxygen levels and my neck. They said they had to do their own bloods and did TSH after i had just eaten and at 1pm. I said this would not be accurate but they did not agree. (2.95). They then said my saturation was 99% and my recordings must be inaccurate. I suggested my oxygen dips at times and they had recorded for 2 minutes. They then said i didnt have Goitres because everyones neck was fat when unless you put your head back and the CT was clear. This was an arm up CT which was looking for blood clots. This all took 6hrs. I really feel like giving up. They had given no diagnosis in 7 months. Trying not to get depressed but its now making me very anxious as i am concerned by thr time they listen it will be too late. Dont need replys just had to rant.
Never going to A and E again, 5th visit. - Thyroid UK
Never going to A and E again, 5th visit.
I don’t blame you for ranting. Taking oneself off to A&E is quite a drastic measure and we attend hopeful that help or insight will be given. I’m routinely underwhelmed by my encounters with NHS staff, the exception being a very young physio I saw just before Christmas. Genuinely empathetic and open-minded. A breath of fresh air.
The incompetence, arrogance and lack of compassion shown by the majority of healthcare professionals I’ve encountered would see me either put on capability or sacked in my line of work.
The NHS is not fit for purpose. Going private isn’t much better.
Trouble is i think i need an operation and i cant afford that privately. I was going to try and go private when i am cured to moniter my levels - as on here it shows that this is a tricky issue and i cannot go through all this and then have a constant battle rrgarding my meds.
I found just being around A&E as a patient allowed me to understand a bit more about what goes on in the NHS. It’s not what we think it is and I previously worked (admin) in a hospital but worked closely with departments, so I thought my knowledge was better than many.
The NHS (allegedly) work by protocols. Mostly this means very little to the patient as we are totally unaware of what these are. Protocols are (allegedly) constructed around best practice ‘patient care’. However we, as patients, don’t know what the protocols are and we depend on medics doing the correct things - care for us. Time we wised up.
A&E literally saves lives. It’s one of the heroic places of the NHS. However nowadays they are picking up even more slack from GPs. Chronic illness is not being taken really seriously. This poses a particular problem (I think) for those of us with e.g. hypothyroidism. According to protocols, the GP should be looking after hypothyroid treatment (which so few seem to have any understanding of). However also, in many areas GPs are ruled over so strongly by local endos and their rules, that the GPs hands are tied. Same when you go into A&E. These doctors are there to ‘save your life’ and yet can only get TSH results. If TSH is ok, they immediately stop looking at thyroid issues and if nothing else ‘shows’, you are out on your ear. A good doctor in A&E will write to your GP suggesting investigations - perhaps. Then your GP must take these forward, referring perhaps to specialists - perhaps. This often does not happen - even in better times. The NHS as a whole is not fit for purpose at the moment.
We have an additional problem in that hypothyroidism (my situation) is known as The Great Pretender. Hypothyroidism, I think, equates with hypochondria in medical circles.
The way things stand at the moment we have to rely very much on ourselves and dare I say, the help we get here on the forum.
I live in France and everything is regulated to within an inch of it's life, every dept, town city works to the same exact procedures. Protocol and more Protocol the difference here is that it works for the Doctors and the Patients.
Same day GP appointment etc. etc.
They spend less per head than the UK but have one of the best health care systems in the Western World.
I did have to visit an A & E Hospital back in the UK in 2020 it was a nightmare, glad to be back in France and cared for.
Yes, i am not saying others shouldnt go - but with this condition they do not know enough. He would not believe that TSH had to be done after fasting and early in the morning. Now i know they are going to take this blood test which is now on my records and say my TSH is normal.
There’s a bewildering lack of professional curiosity and interest in symptoms and lived experiences. I wonder if they enter the profession with such an attitude or do they become ground down by the system?
I feel the main problem is they dont like to be told they are wrong and do not truly listen to symptoms. If you pass out or sturggle to breath its immiduately a cardiac problem.
I feel the main problem is they dont like to be told they are wrong and do not truly listen to symptoms.
I'm not the only person on the forum to have been told that symptoms are irrelevant and only blood tests count, in relation to thyroid. This type of comment has cropped up quite frequently.
If you pass out or sturggle to breath its immiduately a cardiac problem.
And if they think it is a cardiac problem but tests prove it isn't a heart attack then it is put down as non-cardiac chest pain, which is considered to be a mental health problem.
This is fairly typical :
My sense is that very few go into the profession these days with a vocation and if they do, they get it knocked out of them pronto. I am confused about how ‘money’ is the motivation for doctors. As I understand it they are among the top 4% of salaries in the UK - although perhaps not in their early years. They are like anyone else, if they have legitimate complaints about working conditions there are structures in place to deal with them. Doctors, in living memory, used to do home visits, work weekends and evenings. Now lots of them don’t even have to work ‘full time’ hours. Their pension schemes almost make this a must, such are their wonderful retirement arrangements. Could do better for their patients.
Good points, well made. I’m hugely wary however of the ‘vocational’ label when it comes to any employment because it risks being used as an excuse for poor pay and conditions. I know drs work long and difficult hours but, frankly, so do I and my colleagues (teachers) yet we’re nothing like as well remunerated for our efforts.
And don’t even get me started on the whole ‘heroes work here’ nonsense that I see emblazoned outside care homes (nor the condescending ‘clap for carers’ business!): pay hard-working people a decent wage for difficult and demanding jobs.
I agree wholeheartedly with what you say. I would just add that when I last worked in the NHS in doctor recruitment, many applicants came from very privileged backgrounds. Prep schools, private schools. Very few from comprehensives. For many it was the ‘family business’. Little experience of the world outside medicine. I think that has changed a bit - at least there has been a lot of talk about it. I considered my use of ‘vocation’ before I wrote it, probably for the same reasons as yourself. I come from a teaching family and recognise the connotations clearly. However a dictionary check led me to think the word was correctly being used. Maybe there really is a change in the true meaning of the word as you suggest. So much changing and not in a good way.
Your previous blood test results show a slightly low fT4 with normal fT3, TSH. This can cause hypothyroid signs and symptoms but I suspect it is not due to a failing thyroid. The mildly elevated TPO and clear scan rule out a goitre, they would see it anyway. Also, if a goitre was blocking your breathing it is likely to be pretty constant, you wouldn't record 99% oxygen.
I wonder if your breathing problems are disrupting sleep and your pituitary causing your TSH not to rise as much as you might expect? I would try to get to the bottom of your lung / breathing problems as this might then resolve your mildly abnormal thyroid numbers.
I don't have knowledge of breathing / cardiac issues but would be interested in knowing your oxygen % when you measured it.
It is contant as i cannot walk more than 10m. My lings are clear so it has to be my windpipe. I am now struggling to swallow. CT was early November.
Also my neck is bigger by the day - i would suggest TPO 44 shows an issue.
previous post with same results
healthunlocked.com/thyroidu...
Ferritin is deficient
You need FULL iron panel test for anaemia
Low iron/ferritin will cause low oxygen
Low vitamin levels are direct result of having autoimmune thyroid disease
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test.
Avoid high iron rich dinner night before test
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Posts discussing Three Arrows as very effective supplement
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Iron patches
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Ferritin range on Medichecks
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
I have removed image as it contains your name DOB and address
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TSH shows you are hypothyroid
Thanks. I have.
I suggest you take this copy of your blood results down because it has personal information. I was interested in your oxygen saturation %. Your TPO are only mildly elevated, they can go up to 1,000 or more. I'm not sure this matters or if there is any correlation between TPO levels and the size of a goitre.
I assume you have a pulse oximeter? If so I suggest you monitor your O2 levels say every 30 minutes for a few hours so you have some evidence. If your O2 goes low you could try taking readings with your head in different positions just in case the test at the hospital was an exception.
Struggling to swallow is of course different to breathing difficulties, different pipes. So, if there is a goitre it should be very obvious and hard enough to put pressure on the windpipe and gullet.
One other thing I would like to add is the last time I went to A&E, I came out with PTSD. I had already had a very bad night. Arrived just as the shift was changing but very few people there. However I was wiped out. I needed somewhere to lay my head. If you don’t go in on a stretcher there is nowhere to get any ‘comfort’, you just get worse and less able to ‘communicate’ effectively. I know it would probably attract people who were not actually needing immediate medical care if some ‘ease’ was supplied (another massive problem for the UK at the moment) but all these situations are having a knock on effect to each other. Really, someone creative and intelligent and with clout, respected and able to be held accountable, needs to be constantly tackling the issues until they sorted. Just throwing money at it has not worked (nor is it likely to). Piecemeal just won’t do it without an overall plan.
Yes i agree. Also my symptoms are worse when active. After sitting for 6hrs they will get better stats. When they dont they try again until its better and record the top reading. This i have an issue with. My docter saw my levels first hamd as i walked up the road before my appointment. He tried 2 different oxygen readers and then admitted there was a big issue. Cant get an appointment with him now.
So sorry to hear what happened. Unfortunately a&e will not help you I'm afraid. As the a&e doctor said to me when I was rushed in by ambulance they only deal with life and death. If you are not at risk of dying in that moment they move you on. Slightly different if you have a bone breakage. He said to me we can't deal with complex medical needs only life and death so he popped me on a ward as I was pretty ill but clearly not dying (waited 16hrs for bed) and as I was on a heart lung ward a cardiologist trolled the next day in the afternoon looked at my obs, ECGs and said its not your heart you can go home. What about my chest pain (I was post heart operation after all) It's not your heart. Discharge with no Advice, plan or literally anything. By the time I got into taxi chest was hurting madly....So no from what I can gather you have to figure out the possibities yourself then engineer a consultation with someone in that field and hope you've struck gold. This used to be what GPs did.... but no longer do apparantly.
So the NHS has crashed. It's not really functioning. And as my surgeon said and I know other medics have been saying. It's not safe. Fullstop.
Your options are Dr Google, good forums like this and saving up money to see someone private who you have checked out can do what's on the tin.
Even though we have a general election looming sometime in 2024 I notice none of the parties are really touting for custom by saying what they will do to bring our NHS back into the fantastic service it once was.
I guess it's up to us the public to make sure it becomes a very hot topic if we don't want to loose it.
I had to, very reluctantly, use A& E this summer. I started getting central chest pain, thought it was pulled muscle, overdoing exercise or possibly costochondritis, basically inflammation of the breastbone
However the pain was very intense, went into my neck and shoulders and I couldnt lay down. Then it went away, but returned a few days later and didnt alleviate. I phoned my GP surgery who advised going to A&E, due to age (50's).
Had several ECG's, blood tests, eventual,y I was told it was indigestion. Now I'm not prone to indigestion, I only had bad heartburn during pregnancies, so I know what indigestion feels like. By this point it was midnight, I was thoroughly fed up, tired, in pain and none the wiser. I have the usual otc indigestion remedies at home as my husband gets acid problems.
You'll be surprised I know to hear that Gaviscon did nothing. In the end I phoned 111 who sent paramedics out, which I didnt want. They advised me to go back to A&E, when I did they sent me to SDEC, same day emergency care. This was much better than A&E. I was seen, assessed, and told to come back early next morning to see the cardiology team. SDEC seems like a really good idea as they can get hold of specialists at a pre arranged time.
Next morning I had an echo scan and was told I had extra fluid around my heart, which was probably inflammed and was causing the pain. So it was Pericarditis,not indigestion. I responded well to Prednisolone and painkillers, I cant take Ibuprofen due to allergies.
A&E made me feel like I was wasting their time and unless I was dying I shouldn't bother them. In my defence I wouldnt have gone there unless told to. I certainly wouldn't go unless desperate.
UK Governments of all persuasions have often boasted the NHS is the envy of the world, this may have been true in yesteryear but its certainly not anymore. Its more like the third world.
“So no from what I can gather you have to figure out the possibilities yourself then engineer a consultation with someone in that field and hope you have struck gold.”
Wow and they wonder why we need Dr. Google.
Honestly waveylines I think you have hit the nail on the head there.
Are you taking any vitamin D or magnesium supplements?
Folate (folic acid) needs improvement
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
Thanks. Im not taking anything at the moment until i get a diagnosis as i am concerned it may skew my blood tests. But i will whem then journey is over. I will keep your advice. Many Thanks again.
I think you will have to start
If you can’t tolerate vitamin D……start on a magnesium supplement in afternoon or bedtime for 2-3 weeks
Then slowly add a daily vitamin D
Suggest you use vitamin D mouth spray
vitamin D isn’t actually a vitamin, it’s a pre steroid and important for adrenal function too
holtorfmed.com/articles/nut....
ahajournals.org/doi/10.1161...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Initially perhaps just one spray per day
Then build slowly up to 3 per day
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
I will when i have a diagnosis. I cannot self cure as i have breathing and neck problems. But i will after. I dont want to do anything to effect my chamce of a firm diagnosis. Interestingly i have high B12 which is wierd. Never taken any supplement for this.
Hi JCMartin,
My fear is that you're placing much emphasis on getting a diagnosis which may take some time to get; in the meantime you could possibly become even more symptomatic.
I know from personal experience and like many others on the forum how hard it can be to be taken seriously by a GP. I was continually being dismissed by my surgery with a bottom of the range FT4 for many years and eventually below range. I was also very symptomatic and mostly sofa bound as I felt so ill. But I still didn't get a referral or a diagnosis. I had to involve the practice manager and wrote three letters over a period of two years then I eventually got an endo referral. Then over a year waiting to be seen by the clinic.
I can understand your reluctance to take any vitamins as you're concerned they'll skew your blood results. But you will need to have good ferritin, folate, vitamin D levels (for example) for any thyroid hormones to work effectively. Also my ferritin tends to be low in range and it does make you feel unwell and it really affected my breathing. So you could be working on these levels in the mean time and you would be in a better position to be able to tolerate thyroid hormones if you get them prescribed.
My diagnosis was multinodular goitre. I had a thyroid lump removed (hemi-thyroidectomy) so now have half a thyroid. I was prescribed levo but struggled to tolerate it due to being hypo for many years so have had to go slowly titrating up wards.
But I still don't actually have a diagnosis of hypothyroidism!
I understand how difficult it is to get an appointment with your understanding GP but keep on trying!
Best wishes.
Interestingly i have high B12 which is weird. Never taken any supplement for this.
That’s likely paradoxical B12 due to other B vitamins being low
Paradoxical B12 deficiency caused by being hypothyroid
b12oils.com/paradoxical.htm...
I had high B12 despite never taking supplements when hypo ……starting on vitamin B complex was key to making progress
Low vitamin levels lower TSH
So improving vitamin levels may help you get diagnosed
I was also unable to tolerate any vitamin D until took magnesium on its own 2-3 weeks before restarting vitamin D
More on my profile
I was Years undiagnosed and then left over 5 years on inadequate dose levothyroxine, resulting in adrenal fatigue.
But getting vitamin levels optimal, addressing food intolerances and getting on high enough dose levothyroxine, plus T3 added ……Adrenals slowly self improved
Medics will only test and treat vitamin deficiencies
We need to self manage to maintain GOOD vitamins
Only make one change at a time
Starting with magnesium probably
Then wait 10-14 days before adding another vitamin supplement
Getting coeliac blood test too
Lots of posts on here discussing “air hunger” ….
struggling to breathe when hypo/low iron levels
Just because you don’t have visible swelling in neck doesn’t mean you don’t have a goiter …. For many years I suffered with trouble swallowing that at some point it became so bad I started having severe panic attacks…. My thyroid levels were never out of range …. Eventually my world started to crash with my eye popping out of socket and everything went crazy …. I was always told by ENT that I had thyroid nodules but that wasn’t causing my issues and they were benign …. Eventually when my eye popped out of socket my eye doctor sent me to primary doctor and suggested I see Endocrinologist and when I went to Endo she said my throat was slightly swollen and I had another FNB this time it came back cancerous (not saying this is your problem) the Endo told me I should have never been sent to ENT … I 100% agree with this!
Poor you thats awful. Yes i am going to ask for an ultrasound and Endocrinologist referral when i see the docter. Let hope there not a huge wait. Not coping too well at the moment.
horrible visit to endo wish i never gone 
My visit to the Endocrinologist
A+E visit
First Visit To Endo.
