In a dilemma: Had my bloods taken to check my... - Thyroid UK

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In a dilemma

Dicky-ticker profile image
52 Replies

Had my bloods taken to check my thyroid given I have a diagnosed multi nodule goiter. Rang my surgery for a print out of my 'within normal range' and was literally sent "Within normal range 1.48 Miu" with nothing else.

I have been ill with numerous issues for the past 12 months. I'm sick of only getting telephone triage appointments with my GP (vivid restrictions)

I have ectopic beats (every 4th) hairloss and feelings of adrenaline drops, besides a lump in my throat.

But quite honestly I'm sick of being ill, and chasing anyone to step up to the mark and make me the person I was a year ago.

My dilemma is do I shut up and revel in being alive and accept I feel shit most days, or do I carry on shouting for answers which leads me to be stressed out?

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52 Replies
Nanaedake profile image
Nanaedake

First of all if in UK register with patient access so that you can get online access to medical test results.

No one else can return you to health and stop relying on the NHS to do it. You have to take control of your own condition.

Read all the recommendations on this site. Slowdragon lists all the tests needed. SeasideSusie gives vitamin levels suggestions. You must address a y low vitamin levels, address gut health and get testing via online labs to achieve your goals. Y

You can post blood test results here to get advice. Read info on Thyroid UK website to learn how to manage your thyroid condition.

If you follow all the good advice it will help.

Edited: sounds like really good experience from Panda321. Maybe make a new post about people's experiences specifically with multinodular goitre as there are a range of thyroid conditions so treatments will vary. Sounds from Panda you do need to push NHS to take action. Ask for referral to Endocrinology. And research carefully to find a thyroid specialist to be referred to. Most are diabetic specialists and you don't want one of those.

Sharoosz profile image
Sharoosz in reply to Nanaedake

I am registered on the online patient thing and have never found a test result on there. Also, there is no information about drug allergies etc, for which I have filled out forms at two clinics. I assume doctor can see it but why can't I?

Nanaedake profile image
Nanaedake in reply to Sharoosz

You need to ask GP reception for enhanced access to test results then. Assuming they've got it set up. You're legally entitled to results and they should have it set up since 2015.

Dicky-ticker profile image
Dicky-ticker in reply to Sharoosz

I too use patient access, though not at the moment as telephone appointments only. No results are put on system and no messaging facility either even in "normal" times. Only thing it's good for, currently is repeat prescriptions only.

Nanaedake profile image
Nanaedake in reply to Dicky-ticker

Ask for enhanced access to blood test results. They only do it if you ask. You might have to provide ID. Some surgeries haven't got it set up but it's been a requirement since 2015. Legally you're entitled to your results. The info is yours.

Elizabethandbob profile image
Elizabethandbob in reply to Sharoosz

I am registered for online access results. I discovered that you have to view your results on a laptop or PC rather than a tablet or a phone. I only discovered this when I kept going back to my surgery to say I still couldn’t see my results. The surgery manager investigated and told me this. However it wasn’t something that the receptionists seemed to know.

Sharoosz profile image
Sharoosz in reply to Elizabethandbob

I don't have a tablet, nor do I use phone for this and still can't see them...Probably have to ask them to put results online at clinic. At least they print out my results when I ask. :)

Brandibell profile image
Brandibell

Hi there, Take time out, rest up and then go again. There is only us who can advocate for us, we have to keep on fighting for answers or else we just slip through the net. I am with you every step of the way. It is stressful if we do and stressful if we don't. But no way in my health care will accept this is it for a quiet life when i know it isn't. We are both 15 months later. Have you tried threatening medical negligence? It might just give them the kick they need. Take care. X

Dicky-ticker profile image
Dicky-ticker in reply to Brandibell

It's taken me 12 months to win my right to return to work. I'm under Cardiology, Neurology and now Endocrinology.

I am literally on my knees. I can't afford to go off sick again. Never did I think I would still be a medically mystery or intriguing 15 months in 😱 it's truly shocking. Not considered threatening medical negligence, may just chill, re set my head and then pursue again!

Brandibell profile image
Brandibell in reply to Dicky-ticker

It just goes to show how unique you are. I am the same I am now under Electrics and possibly rare heart condition. Financially on our backsides I am the breadwinner. They tried to add another 6 month delay due to covid i blew a fuse it is now being moved forward. I am more tired of constantly fighting to be heard. Take care.x

shaws profile image
shawsAdministrator in reply to Dicky-ticker

Definitely request a Free T4 and Free T3 blood test (different from T4 and T3). Our body cannot function without T3 and the fact that it's been withdrawn by the NHS is more than disgraceful.

Again the 'heart and brain' have the most T3 receptor cells and it is also the Active Thyroid Hormone. T4 (levo) being inactive and has to convert to T3 and some of us don't do so effectively.

When I took levo my heart played up a lot. I had lots of tests and overnight monitors etc and cardiologist was puzzled and was about to put an implant in my heart 'to see what was going on'. A few weeks later the endocrinologist added T3 to T4 and I never needed to see the cardiologist again as it had an immediate settling affect upon me (a good affect).

Dicky-ticker profile image
Dicky-ticker in reply to shaws

You would think your GP would request the most appropriate blood test needed. I had a lengthy phone consultation with him the week before about comprehensive bloods!! It's one big continuous asking, requesting, asking!

shaws profile image
shawsAdministrator in reply to Dicky-ticker

Thank goodness we've got the internet. Before that doctors seemed to be so knowledgeable - without blood tests and if you read 'Tears Behind Closed Doors' the doctor named within, has now died and he was amongst doctors who could diagnose upon the patient's clinical symptoms, their appearance and no blood tests. Another doctor was Dr Skinner who was trained around the same time:

dailyrecord.co.uk/news/real...

They actually 'saved their patients lives'.

Nowadays we've to use the internet because the action taken by doctors isn't resolving our symptoms. One doctor told me - when I was really very, very unwell - that I had a web in my throat and I'd choke to death if it wasn't removed.

He didn't even come to see me after op and it wasn't till the following week I found he had done nothing at all to my throat as there was no such thing. You don't get your money refunded and I still had no diagnosis but still very, very unwell so TSH had to be extremely high.

I think there must be thousands of women worldwide who remain undiagnosed. They will be given anti-d's etc because they appear at the surgery too often!!!

greygoose profile image
greygoose in reply to Dicky-ticker

I'm afraid that is not the case. GPs know next to nothing about thyroid, and were told in med school that all they needed to test is the TSH, and that tells them all they need to know. Totally wrong, of course, but they never learnt enough about thyroid to understand that.

And, that looks like what you've got. A TSH result. Which looks good, and is obviously in-range - you don't have to go to med school for 7 years to see that! - but tells you next to nothing.

So, no, they don't request the most appropriate blood tests need to diagnose and treat thyroid. And, even if they do, the lab will often refuse to do them. Which is why so many people get private tests, just to understand what is going on with them. It's a wicked situation!

Assiya profile image
Assiya in reply to shaws

Have you heard of indium? It has something to do with the hypofyse and absolving minerals. It looks very good to me, but have not ordered yet.

helvella profile image
helvellaAdministratorThyroid UK in reply to Assiya

Everything I found about Indium makes me think it is being promoted as the latest, greatest thing ever with precious little real evidence, if any, and plenty of possible negatives being documented elsewhere.

We do ask that people post reputable sources when making claims - which is the effect (if not the intent) of your reply.

Assiya profile image
Assiya in reply to helvella

Experience from people to me speak louder than the Pharma. And in the case of indium same. Real good reviews and the one who told me about it was very enthousiast.

The experience of others plus the fact that tinitus is due to the brain thinking sound comes which doesnt come as explained the specialist in the hospital and I made the connection with the hypofyse and the indium works on the hypofyse. Its good to not jump on anything but its also not smart to just depend on what Parma says. I never heard anything about hijama while we know many sickness come from the blood (hijama cleanses the blood reduceer pain etc). I not came across negative experiences, the only thing that hesitates me in buying it, is that it is not found in and food naturally. So I dont know exactly what it is and where it is from/for etc. But the 5 reviews i read were very positive

helvella profile image
helvellaAdministratorThyroid UK in reply to Assiya

I certainly wouldn't choose to consume any indium whatsoever. You are, of course, free to make your own mind up and do as you wish.

Biological role and precautions

Indium has no metabolic role in any organism. In a similar way to aluminium salts, indium(III) ions can be toxic to the kidney when given by injection. Indium tin oxide and indium phosphide harm the pulmonary and immune systems, predominantly through ionic indium, though hydrated indium oxide is more than forty times as toxic when injected, measured by the quantity of indium introduced. Radioactive indium-111 (in very small amounts on a chemical basis) is used in nuclear medicine tests, as a radiotracer to follow the movement of labeled proteins and white blood cells in the body. Indium compounds are mostly not absorbed upon ingestion and are only moderately absorbed on inhalation; they tend to be stored temporarily in the muscles, skin, and bones before being excreted, and the biological half-life of indium is about two weeks in humans.

People can be exposed to indium in the workplace by inhalation, ingestion, skin contact, and eye contact. The National Institute for Occupational Safety and Health has set a recommended exposure limit (REL) of 0.1 mg/m3 over an eight-hour workday.

en.wikipedia.org/wiki/Indium

There are several papers discussing the toxicology of indium.

shaws profile image
shawsAdministrator in reply to Assiya

I have not heard of indium but as I'm well I don't want any changes to my regime.

JaneChapple profile image
JaneChapple in reply to shaws

I agree Shaws but its as much as I can do to get my surgery to request T4 and T3 these days. It was really hard work last time and managed to get hospital to tag mine and son's accounts after several phonecalls to surgery. This was before COVID-19! Alot of surgeries are using a new electronic syztem so doc cant request what they want on form. The person taking bloods showed me and it said if TSH normal, and T4 or others needed please email lab separately and do not phone! I looked on records a day later and all that was posted was TSH for both of us. Eventually got the others put on T3 and T4. I could do with Rs this time but I dont think even endo looks at those. In fact his Associate said T3 not necessary, we only need TSH.

He also put on my letter to GP TSH only needs to be below 2 for pregnant women! I despair I really do. Its hard enough fighting for one let alone two! The reason I cant get T3 on NHS is simply because my TSH is suppressed and surgery pass buck to endo who then doesnt support me 100%. He has asked me to down my T3 dose to 40 from 45 and add either 50mcg of levo (which he knows I cant tolerate, and was even put in heading of the same letter) or 1/4 grain of NDT! Its ludicrous and because I have phonecall in Sept am trying to do as he says, but it is making me feel worse! Sorry to digress from the original post but getting bloods is really hard and it shouldnt be this way. I may now have to do finger prick for both of us (which I have never done before) or go to surgery and try and explain the whole situation to different nurse. I really believe its being done on purpose to save them money and keep us away from them. Its truly exasperating and no wonder I feel ill and worn out with undiagnosed OSA which is yet another fight I have to endure. I am running out of energy fast! 8 am expecting to be offered ADs next. Already been offered pregabalin, propranolol etc, etc!

JaneCxx😣😥😎

shaws profile image
shawsAdministrator in reply to JaneChapple

I decided to be my own Adviser, source my own thyroid hormones (although on a couple of occasions there was a shortage).

I am not going to be told what to do as the 'modern' doctors have no knowledge of physical difficulties (i.e. sometimes brains don't work as quickly as they did) but to feel well with no symptoms is amazing.

The fact that those Official Websites who you would expect would help patients recover do the opposite and that's why the majority on this forum 'do it themselves'.

There are more than a small number diagnosed with psychiatric problems and given medications, instead of doctors knowing clinical symptoms and providing the appropriate thyroid hormones that enable them to recover. However, the 'specialists' seem to make decisions that backfire onto the patients who are far worse but are ignored as 'neurotic' or some such name.

I suit myself thanks to Thyroiduk.org.uk of which I'm a member and hopefully many more will so that our voices are louder.

We want doctors like the following as UK doctors who were trained well before blood tests etc. became the diagnosis who have now retired/died and when we went into their office, our hand was shaken and they could tell - even by that small event - the patient's situation/cause.

hormonerestoration.com/

shaws profile image
shawsAdministrator in reply to Dicky-ticker

p.s. despite the fact that GPs are apparently told not to diagnose a patient with hypothyroidism until the TSH is 10. (absolutely disgraceful). How ill people have to get before being prescribed makes me speechless.

In other countries, I believe people are diagnosed if TSH goes above 3+ but I had to diagnose myself and TSH was 100 the day after doctor phoned to tell me I had nothing at all wrong with me.

McPammy profile image
McPammy in reply to shaws

My GP wouldn’t even test my thyroid bloods. Eventually after several visits pleading they did. My TSH was 36! I was in a hell of a state. They gave me Levothyroxine and never tested T3. For 11 years I struggled on. Since finding this site 2 years ago I’ve learnt I have the DIO2 gene and poorly convert. Going private was my saviour and bring prescribed T3 has been my life saver.

My GP said to me last year that I may as well be talking to a plumber on two occasions as he had no clue about the thyroid. At least he was honest. But should have referred me years ago as I was back and forth with hypo symptoms for over a decade.

shaws profile image
shawsAdministrator in reply to McPammy

Thanks for your response and the phrase that your doctor made "My GP said to me last year that I may as well be talking to a plumber on two occasions as he had no clue about the thyroid."

This is a very shameful statement from those we'd expect to know something about dysfunctional thyroid glands, so they are definitely not trained with one of the commonest autoimmune conditions which means patients suffer and are thought to be troublesome because they keep appearing in the surgery because they feel so unwell but don't get any positive results from the doctors. I wouldn't be surprised if some people are given anti-depressants or anything but ensuring their FT4 and FT3 are optimum.

The fact too, that they can only prescribe levothyroxine - a replacement that made me far more unwell with symptoms I didn't have previously.

Not one medical person diagnosed me. If you click on my name you'll be taken to my journey to be diagnosed.

McPammy profile image
McPammy in reply to shaws

Hi Shaws,

I’ve just read your story. Oh boy you’ve definitely been through it. I completely understand as I too was back and forth to my GP for years. An owner of a local health shop suggested that I get my thyroid checked. I went to see my GP but he said I had depression. I went back several times over the corse of a year. Finally after the 5th time he agreed to check my thyroid. My TSH was 36. I was started on Levo. I took it for 11 years and always felt unwell. I’d be out walking my dogs and often feel as though I was about to faint. I never fainted. I felt weak and starving even though I’d eaten breakfast. I’d take a banana with me but it made no difference. I got sent home from work or taken to A&E many times over the year’s too. They never found anything wrong with me. Clearly there was an issue. I stayed in hospital 3 times in 2018 now 12 years on Levothyroxine alone. I could barely sit up let alone walk. They found nothing wrong with me! Finally I found TUK and with the advise from Slowdragon I went to see a private Endocrinologist in Oxford. Within 2 consultations I was prescribed T3 medication. Oh boy what a difference it’s made to my life. Unbelievable how so many Drs could miss my thyroid levels were wrong. All the wasted NHS money over the years is criminal. I now feel fabulous and feel at least 15 years younger and lost nearly 4st in weight. Incredible. I feel that I lost nearly 17 years of my life through NHS neglect and not being believed. 2003 was the first time, I recently found on patient access, I had abnormal thyroid results. 2008 I was given Levothyroxine finally. Then 2019 I privately was prescribed T3 thanks to Thyroid UK and it’s administrators. A huge thank you to you all.

I’m so glad you got sorted and today you are much healthier. We need inspiring stories like yours to motivate other people suffering with No help from our not so wonderful NHS and Drs. Well done you and thank you for sharing your story albeit harrowing.

shaws profile image
shawsAdministrator in reply to McPammy

It is awful that we have to have very stressful experiences that we'd expect professionals to detect what is wrong (through symptoms alone and then follow-up with a blood test) and I feel very sorry for people those who depend upon them but struggle on without being aware that they have a very common autoimmune condition.

Refat profile image
Refat in reply to McPammy

Hi McPammy

I may have to consider going private at some point if i fail to convert to t3 properly once my iron levels are optimal. Please could you provide details of your private endo if possible.

I live in west yorkshire, I have made enquiries already and some endos say they will help administer t3 but I will have to purchase it from a reputable source.

1piglet profile image
1piglet in reply to McPammy

Is it possible that I can pm you re your private doctor. Basically, I live in Spain, and I am getting nowhere with my health. Finally, I may be going to England for a month (God willing with this Covid 19 situation), so I will have the opportunity to have a private consultaion. Although I have a couple of names to try, it would be good to try someone who has been personally recommended. I too have the faulty DIO2 gene.

joydot profile image
joydot in reply to McPammy

my tsh was 2000 when auckland based indian-south african trained gp figured it out (before results were back). usual bog standard tests were coming back all fine.

With a multi nodular goitre it is probably impossible that your health will improve by itself or even stay the same. It is just a question of how quickly it will deteriorate up to the point it will become intolerable. It is perhaps possible for some medication to improve the situation but I am unaware of what it may be. Just one thing is certain, the longer you leave it, the greater will be the impact upon your life and the greater will be the chance of a disastrous outcome if/when surgery is the only way forward.

I got to the point that I could walk just 50 yards before I collapsed, taking up to a week to recover.

You must take great care to avoid contracting the virus as that could prove very bad indeed. Also beware of your throat contracting resulting in shortness of breath, pneumonia and even inability to breath at all and tracheotomy. I do not exaggerate these eventualities, I was affected by them all.

I had "camera down throat" a couple of times, surgery during which the surgeon had to halt the operation due to his inability to continue, a six month delay when they did not appear to be able to find a surgeon capable of finishing the operation, a desperate plea to the hospital PALs to get some action, the refusal of the appointed surgeon to even see me, the agreement of the best thyroid surgeon in this part of the country who just happened to be visiting the hospital on his day off. YES, I've had it bad and I know with a great deal of bad memories what I'm talking about!

The following morning he told me that mine had been, by far and away, the most complicated operation he had conducted in over 13 years.

Take it from me, get something done, most probably an operation asap to reduce your chances of going through what I experienced.

Following the op, you will probably be asked if you want RAI ablation to destroy the bits of your thyroid the surgeon could not remove. my advice - DO NOT HAVE IT!!!

The reason - With RAI it is certain that you will have to take NDT to remain well. This is NOT available from the NHS so must be bought from abroad. Levothyroxine will keep you alive but you will suffer with residual problems for the rest of your life.

Without RAI it is perhaps possible that the ONLY medication you WILL get from the NHS will keep you well.

This reasoning is based upon my personal experiences and opinion, NOT upon what any doctor will tell you. I believe it to be true.

I wish you all the best. What you are experiencing was for me the worst time of my life by far, do not assume that anybody will step forward to help you without a great deal of prodding by yourself.

Dicky-ticker profile image
Dicky-ticker in reply to

Sorry to hear your struggle Panda321 the NHS is is not meeting the patient care charter these days. Nobody takes ownership and you're sent from department to department without a diagnosis until the worst happens. Look after yourself x

shaws profile image
shawsAdministrator in reply to

Very, very true. Unfortunately.

Lora7again profile image
Lora7again

I have had a multi-nodular goiter for about 12 years and yes it can give you symptoms but I have no intention of having it removed because I can live with it. A lot of people have had their thyroids removed or RAI and have regretted doing it because they have then struggled to get the right treatment afterwards. One of the first things my Endocrinologist said to me was that I could have it removed or RAI and I am so glad I did not take his advice. Yes some people's goiters can become large and cause problems but mine has not really grown yet but it might do in the future. You need to have regular ultrasounds and also get a detailed thyroid function blood test including antibodies so you might have to pay for that because the NHS only test the TSH. As you are already having symptoms you probably have high antibodies and mine are very high and have been for many years. You can read my story on my profile page if you are interested. Just to add at the moment I am feeling very well and my goiter is not causing me too many problems.

I have just read some of your threads and it seems your are having problems with your heart because of the goiter. I actually collapsed last year with a suspected heart attack which turned out to be a thyroid storm. I think one of my nodules must have dumped too much thyroxine into my blood stream. I was sweating shaking and my heart rate and blood pressure was very high. A & E did tests and told me my heart was ok and it was because of my thyroid disease. Perhaps you might need some medication to help with this because I was offered propranolol when I was first diagnosed but I decided against it. I still get palps daily and I try to breathe through them and keep calm. I am only passing on my own experience and everyone is different but I have experienced extreme hair loss twice because of this disease. My hair has now been growing back for over year so at the moment I am doing ok.

Dicky-ticker profile image
Dicky-ticker in reply to Lora7again

I take Bisoprolol for my ectopics, I'm waiting for an implantable loop recorder to be fitted so they can monitor my heart rate remotely for around 3 years. My hair is extremely thin on the top of my head and bald patches on the sides!! I'm just infuriated by the fact they admit I've a goiter, you can see it and feel it, but they don't do anything because my levels are 1.48 (even though I have additional symptoms)

joydot profile image
joydot in reply to Lora7again

at 20 my daughter had same. biggest one turned out to be cancerous. took a year to figure it all out but she is way better now for having it all removed.

Dicky-ticker profile image
Dicky-ticker in reply to joydot

Glad to hear your daughter is feeling better and everything went ok.

Kandahar profile image
Kandahar

Keep shouting!

For a start, you’re entitled to your full results from the lab. Not sure how you get this started but more experienced on here will tell you. I’m able to see mine on line but I’m not sure how all surgeries do it.

Good luck

shaws profile image
shawsAdministrator

I'd get a Free T4 and Free T3 blood test. Your heart may be 'playing up' due to not having sufficient T3 (the Active Thyroid Hormone) and our heart and brain have the most T3 receptor cells. I doubt many doctors are aware of this fact.

The majority on this forum have recovered their health by taking advice from other members who've gone through similar trials with doctors who seem to be unaware of the function of T4 or T3.

HashiFedUp profile image
HashiFedUp

The latter dickyticker! Ive met people who have accepted inadequate NHS treatment and effectively given up on life. This is no good. You have to fight for better care. You have to read and read so you know the best research and treatment out there and talk to people here so you may form generalisations. In the words of Dylan Thomas “rage rage against the dying of the light [and the NHS]”.

If you don’t get anywhere go private. I did and it was the best £150 I have ever spent in my entire life.

Ranges wise, try to get your t3 and t4 75% up through the range and your TSH should be ideally between 0.2 - 0.6 to feel well. If my tsh was 1.48 I’d be feeling terrible. Also watch out for vitamin and mineral deficiencies as they are common with thyroid distinctions . esp vit D.

McPammy profile image
McPammy

I’d request a referral to an ENT Dr if you have a lump. My sister was back and forth to GP and Endo who said she had no thyroid issue.

She requested a referral to see a ENT Dr. They did a fine needle aspiration and found she had thyroid cancer and it was removed within 2 weeks.

I’m not saying this is your case also but best to check out the lump.

You could mention that you want to put a complaint through PALS to the surgery manager, even if you don’t intend to. That’ll put the fear in then to get things moving at least.

Dicky-ticker profile image
Dicky-ticker in reply to McPammy

I've been to see Endocrinology, my GP referred me in as having a thyroid lump, and was advised he wasn't qualified enough to diagnose. After finally getting my appointment I had ultrasound scan which revealed multi nodule goiter, and not to worry it wasn't cancer. I then thought my GP would investigate a treatment, but he just says "normal ranges"

Lillywing profile image
Lillywing

I have nodules all over my thyroid. I suffered ectopics all the time which exhausted me and made me feel unwell. I had my heart thoroughly checked and nothing wrong. Three weeks ago I had half my thyroid removed due to one nodule being 3cm and atypical cells. I can only tell you my experience which is I feel amazing since the operation and have my energy back and the ectopics have virtually gone. A couple here and there. Nothing compared to the constant feeling hour upon hour sometimes. I think you need treatment of some kind. And I don’t think many doctors believe nodules cause us to feel so bloody awful. Two surgeons both told me it was unlikely either my ectopics or feeling unwell were caused by my thyroid because my blood tests looked normal. My next move was going to be to find the best private Endocrinology doctor I could. I’m hoping the other half of my thyroid continues to function well but if it doesn’t I will go to a specialist in thyroid hormones. Hope you find some answers.

Lora7again profile image
Lora7again in reply to Lillywing

I pleased to hear your ectopics have almost gone and mine happen only occasionally but I do find stress and coffee can make mine worse. I love coffee so I do have just one a day and try to avoid stress which is a bit difficult because of what is going on at the moment. Luckily all my nodules are small but I intend to have regular ultrasounds to monitor them. My GP has said a lot of people have nodules in their thyroid and it doesn't affect their thyroid function which is rubbish because I actually had a thyroid storm last year because of mine. Hopefully I won't have to have any surgery but I have no idea what the future holds for me.

Dicky-ticker profile image
Dicky-ticker in reply to Lillywing

Thank you for your reply I was thoroughly tested by cardiac unit but then felt abandoned when no medical assistance was offered. I feel utterly exhausted having every 4th beat jumping in my chest (my heart rate sounds like a snare drum) I don't think the medical profession realise what struggles people experience, when you're under 3 consultants, who all say "it's not really a cardiac issue, you're not really neurology, and endocrinology say it's not cancer so bye"

I'm going to get my head together, and then go on the pro-active pathway again.

Glad you're feeling better finally, our experience does sound similar

Lillywing profile image
Lillywing in reply to Dicky-ticker

I also put myself of coenzyme q10 as well as magnesium vit d and n complex. I think the coenzyme q10 has made a massive difference to me generally. I was taking the others before surgery and only started the coenzyme a week before and did feel better I must say leading up to surgery. I read it was hood for ectopics on a forum about them. They are horrible things and my heart surgeon told me it was in my head in a nice way. It was not. Unless you have cancer they have no idea about so much stuff. To put your mind at rest about the ectopics I watched every video by dr Sanjay Gupta on Facebook and you tube. He helped me so much. Look him up.

Lillywing profile image
Lillywing

That’s good you don’t get many ectopics and you have only small nodules. I really hope you get the right help. I had no idea how a thyroid can play merry hell with us. I would find an Endo expert. Someone who has a passion for the thyroid! X Good luck.

SlowDragon profile image
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Frequently only TSH and that’s completely inadequate

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 are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies

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 .

If on levothyroxine....

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Add results and ranges if you have any...or come back with new post once you get full results

Thousands of UK patients forced to test privately to make progress

kvmj profile image
kvmj

I have 2 nodules which make me hyperthyroid. Symptoms were tachycardia, my hair and nails grew very fast and I was hot all the time. Honestly, I felt fine. I ignored my symptoms until I couldn't. I ended up with congestive heart failure, A-fib, and osteoporosis.

My thyroid is normal now. I think that I'm about as good as I can get.

joydot profile image
joydot

same position, hear the pain. my decision is to not stress (have ptsd gratis nhs) so when my desiccated provision is low i run on cortisol. its not fun, its disastrous. people think i'm joking but am very serious about doing a fuck-you ted talk about thyroid dramas & doctors being assholes. not taking this shit sitting down. if doctors don't leave their seats crying i will have failed. we are going to have to get uglier to make these morons educate themselves. no sympathy. we should not be going through this, the long term implications are disastrous & expensive. feeling shit is not acceptable.

SkyBelle profile image
SkyBelle

Change your Doctor - good luck, there are some decent Doctor s out there.

joydot profile image
joydot in reply to SkyBelle

My new scottish doc is great. The issue is desiccated. specialust told her not to do it.

Zezee profile image
Zezee

Hi there ...My aunt has just been put into hospital with

Lump on her throat she had a bad cold virus for about 3 week doctor said ...doctor in hospital think it may have been reaction to antibiotics thinking it may have caused thrush to build up have giving her nystatin drops easing it a little still to get camera down throat ...let your doctor know you need a house call over your concern ...all the best

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