Total Thyroidectomy: Hi after what has been an... - Thyroid UK

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Total Thyroidectomy

Mmw-15 profile image
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Hi after what has been an awful year with my health ( hashimotis, goitre, RAI, thyroiditis etc ) I am now having to have my thyroid removed. Please can anyone let me know of their experiences and any advice would be greatly appreciated

Many thanks Michelle

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Mmw-15 profile image
Mmw-15
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Clutter profile image
Clutter

Mmw-15, I had hemilobectomy followed by completion thyroidectomy, and because I had thyCa minimal remnant thyroid was left and it was goodbye Hashimoto's!

The op can take several hours and is usually via day surgery with an overnight stay. A drain (tube and bottle) collects fluids after surgery to reduce swelling. It looks horrid but isn't uncomfortable and is usually removed prior to discharge next day. Despite having a camera down my throat so the surgeon could avoid damaging the vocal chords, I had no throat soreness or pain post op and felt well enough to eat and drink, and have a lively visit from my sister. It's recommended you have soft foods and soups available at home in case your throat is sore. Copious pain relief was available in hospital and to take home. I needed very little and I'm not at all stoic. I was starving when I woke up on the ward after the evening meal so you may want to take a sandwich, some fruit or yoghurt.

My parathyroids were probably bruised because I had low calcium but I didn't feel up to the 3-4 hour round trip to collect a calcium prescription and levels normalised by the time I returned to have the stitch removed a week later. The wound needed to be kept dry for a few days and I was given an antibiotic eye ointment to apply until the wound healed. I have a fine white line of a scar in the hollow of my throat which is almost imperceptible.

You'll be given thyroid replacement the morning after thyroidectomy. If you're not already taking Levothyroxine you'll feel quite fatigued for a week or two until the Levothyroxine is absorbed and starts working. You're advised to rest a lot for 2 weeks after the surgery and I slept for England.

I hope all goes well.

Mmw-15 profile image
Mmw-15 in reply to Clutter

Thank you so much, how are you feeling now ? Do you feel like your old self, I'm desperate to get back to me and at the moment I feel like there's no light at the end of the tunnel, I've had an awful year so in a strange way I'm looking forward to it. Thank you again x

Clutter profile image
Clutter in reply to Mmw-15

Mmw-15, Unfortunately not back to pre-Hashi health. I was recovering well on T3 but didn't do well when I was switched to Levothyroxine and became mostly bedbound for more than year. I'm good now on combination T4+T3 but I'm still recovering fitness and stamina and have to pace myself.

Btw see whether you can get vitD tested ASAP. Research shows that 40% of American patients undergoing thyroidectomy are vitD deficient. Recovery will be better if your vitD levels are good.

Mmw-15 profile image
Mmw-15 in reply to Clutter

Hi thank you, I'm currently taking Vit D daily and Vit B12 injections as recommended by my consultant because of my deficiencies, I will have along chat and do research on the meds ( I'm currently on 100mg of thyroxine ) thank you for your help and for replying, I have a lot to think about x

Clutter profile image
Clutter in reply to Mmw-15

Mmw-15, I don't regret having the thyroidectomy. Removal of the tumour meant I could breath and swallow freely and until it was gone I had no idea how seriously it was affecting both. The tumour was found to be malignant so removal of the remaining lobe was arranged. The cancer hadn't spread but I don't regret the loss of a healthy lobe because Hashimoto's flares and symptoms stopped almost immediately and I prefer thyroidless with no Hashimoto's to having functioning thyroid lobe plus Hashimoto's.

You are already taking Levothyroxine so you won't have the problems I had when I was switched to it. You may have problems with undermedication or low T3, but both are easily resolvable, with or without your doctor's co-operation. My major regret is not trusting my instincts when my endo insisted all was well and Levothyoxine couldn't cause the problems. When I took charge it took 6 months self-medicating to get me to a good place, and once there, endo started listening to me.

Other problems I had were deficient and low vitamins. Wellbeing was considerably improved when they were corrected.

Mmw-15 profile image
Mmw-15 in reply to Clutter

Thank you, I will keep you posted and I'm sure in the future I will ask you for your advice and help especially on the meds side and Im so glad to hear your doing ok. I'm struggling at the moment so many people telling me not to do it, Im in a very bad place at the moment and I like what you said thyroidless with no hashimotos along with everything else that's going on with me. Thank you again you've been a great help to me xx

Clutter profile image
Clutter in reply to Mmw-15

Mmw-15, I don't want to imply thyroidectomy will always resolve Hashimoto's, it will depend on how much thyroid remnant is left in the bed whether Hashimoto's can continue to cause problems or not. Because I'd had thyCa the thyroid bed was cleaned as much as possible and this is probably why I had no more Hashi's.

Mmw-15 profile image
Mmw-15

Thank you, I'm currently on 100mg ( it's just been reduced from 125mg because of my TSH level being 0.07 after having another bad spell of thyroiditis) of thyroxine and my consultant has said it will need to be increased after op, The surgeon secretary is calling me today and I'm hoping to see him tomorrow so I have written lots of notes down to remind me on what to ask, thank you again x

faith63 profile image
faith63 in reply to Mmw-15

I don't think you are being treated properly and you need to know that thru functional medicine, Hashimotos can be put into remission. I, personally, would never have my thyroid removed, unless i had Cancer in it. Hashi's isn't a reason for removal. I joined Dr. Isabella Wentz's emails and am trying to put my disease into remission. I have been ill with it since 2008.

Mmw-15 profile image
Mmw-15 in reply to faith63

Hi thank you for your reply, I've had 3 attacks of thyroiditis over the last few months and the consultant has said my body can't take anymore, I have very high levels of protein in my blood and the consultant has said they need to come out as they could now turn nasty, I have very bad attacks and they last a long time it really gets me down, because I get so many and along with everything else she said its best to get them removed. It's been a hard decision but one I feel I now have to do. Thank you for taking the time to reply x

faith63 profile image
faith63 in reply to Mmw-15

What is "They" that have to come out?

It's just me..i stopped listening to doctors and would rather just get rid of the cause of this disease. There is something wrong with your immune system, not your thyroid!! It has been horrifying!

Klagh profile image
Klagh in reply to faith63

Faith63,

I have the Isabella Wentz book and several other books advising how to put Hashi's into remission.

I personally think it can be very difficult, complicated, time consuming and expensive trying to put Hashi's into remission for some us, especially if we are over 55 years old. Aging can really complicate things.

I find there's a lot of conflicting info among "thyroid experts" about diet, vitamin and mineral supplementation, use of hormones, and use of the hundreds of supplements out there.

I imagine remission would be much more achievable and easier if I were in my 20s or 30s.

Mmw-15 profile image
Mmw-15 in reply to Klagh

I'm 45 and feel 75 some days, I'm on Vit D daily Vit B12 injections - gluten free etc I agree it's such a difficult one, I had a bad few years - sphincter oddi disfunction - gall bladder removed - hiatus hernia and my consultant believes it's all connected - I've had enough now, I'll do my research and speak to my surgeon but I agree the older you get the harder these things become Thank you x

faith63 profile image
faith63 in reply to Klagh

Klagh..

i am in my 50's, seen nearly 40 doctors for help, been homebound and ill, since 2009. No thyroid meds helps me feel normal. I have just had testing and found i have no good gut bacteria or digestive enzymes, which can be a cause of this. What choice do we have, but to treat our immune systems? Taking a thyroid pill, does nothing for that. I don't want Cancer, like my parents..what else do i do? Give up because it's hard? Not me!

You say "easier". What is easy about daily suffering?..i have no option but to go the functional medicine route. At least i have hope now, to regain my health.

Klagh profile image
Klagh in reply to faith63

Dear faith63,

I am so sorry.

I can't see you, but I pray that you will find some relief, or at least maybe a little MORE relief. It is distressing to me that you have suffered so much, MUCH more than I have!

I will be praying for relief for you and your COMPLETE recovery and healing. Please keep me updated on how it is going for you, and if you ever just want to vent, please send me an email at ralph.dundas@yahoo.com. (For convenience I use this email address, since I have used it for a long time, and it is known to my friends and family.)

I hope it is some comfort that there are some of us out here who at least understand a little bit of what you are going through.

All the best to you,

Ms. Klagh

faith63 profile image
faith63 in reply to Klagh

Aww..you are so kind and i was angry with your comments! You just never know with writing, what is behind it all. Thank you for your kind words and reaching out to me. I pray, your prayers work! LOL!!!

Maybe i am actually one of the lucky ones. Had the the thyroid meds helped me feel okay, i would not be working on healing my immune system, which is bad with anyone with autoimmune disease..i hope you are doing it too!

faith63 profile image
faith63

I'm sorry but i am just blown away by this! You have had 3 attacks of thyroiditis over the last few months..i have had attacks lasting eight months a piece..i was hyperthyroid for 2 years of my life and no doctor ever told me to have it removed. and i am grateful that they didn't because i was looking into having it done and was told hashi's is no reason for removal..it also can burn itself out. Are you on thyroid hormone, enough to suppress your TSH, to 1 or less? This will stop the attacks, usually. It did for me. My attacks happened before meds and then when i went on NDT.

The doctors, ask anyone on here, don't know how to treat thyroid patients correctly..rarely any do. And, they know even less about treating hashi's by fixing your immune system..they don't do that!

There is proof out there, that you can put it into remission, through functional medicine..people with hashi's have multiple food sensitivities..it is really common. Finding what they are and removing the foods and whatever else caused this, is worth a shot. Repair the bad Gut too. I am so grateful now, to have my thyroid. It is the only thing the doctors got right, which amazes me because they make quite a lot of money from that surgery!

Mmw-15 profile image
Mmw-15 in reply to faith63

My levels of SCRP are very high now along with my symptoms and other blood tests my consultant feels both lobes need to be removed now, she said over a year ago that she didn't recommend the op so I had RAI treatment but everything has come back worse, I've been gluten free and followed all the advice, it's been a very long year, I've had every test going ( thankfully I have health insurance ) I'm seeing the surgeon tomorrow so will ask lots of questions, a friends friend had it done beg of last year and he said he's never felt better. My consultant has said I'm high risk of something nasty happening so it's a something I feel I should do. It's a tough one when you hear everyone else's stories opinions, let's hope I can report back saying I'm feeling myself again x

greygoose profile image
greygoose in reply to Mmw-15

I Don't really understand why you had RAI for Hashi's. That's really not the usual treatment. A hyper phase of Hashi's will just run it's course and burn out. And hyper phases don't go on for ever, there comes a point when they stop. If they had to give you anything, why didn't they just give you short course of Beta-blockers. And how did you know they were hyper phases, anyway? Did you have very high FT3?

What is this something nasty they expect to happen?

High SCRP just means you have inflammation, which is quite normal with Hashi's.

You are probably feeling so bad because you're not on enough thyroid hormone. Cutting it back because of the TSH is lunacy. The TSH is irrelevant. It's a useless test. If you have Hashi's, you need your TSH suppressed. Did they at least test the FT4 and the FT3?

Doctors have this weird idea that if they whip out the gland, everything will be hunky dory. But it won't, because it's not the gland at fault. And, on top of that, they have no idea how to treat the resulting hypothyroidism - for life.

Obviously, it has to be your decision in the end, but I can't help feeling you Don't really know enough about it to make an informed decision. And I Don't get the feeling that your doctors do, either.

Binkie profile image
Binkie

i had most of mine removed 7 years ago due to a goitre, the hospital were marvellous i was in for 5 days, i came out with 14 huge blanket stitches and slightly traumatised, i am the worlds worse baby. The op was fine no pain or discomfort i was sent home with pain meds.

The scar healed well, barely visible now but my problem has been since op my dr refused to treat me as hypothyroid and my health nose dived, they believe 20% of poorly thyroid gland left is perfectly adequate but all my symptoms disprove that.

I have been running on empty ever since, i now self medicated which is changing my life.

If you have all of yours removed i would expect them to treat you right away but make sure you have all the info you need. I have wasted years of my health by trusting my dr to know what he is doing....big mistake xx

Gismo333 profile image
Gismo333

Hi I lost my thyroid over 20 years ago. The one rule to go by is to find a doctor that will give you T3 with the T4 and not go totally by the blood tests. They gave me T4 only after the gland was removed and monitored me by the TSH and I gradually deteriorated, lost 3/4 of my hair, developed ME, CFS and Fibromyalgia to the extent I could not walk properly for almost 18 months. I just lay in bed like a cabbage, my eyesight was fading and my pulse at one point dropped to 42, why, because I could not convert the T4 properly and so the T3 receptors (little doors on the cells) were starved of T3 and literally went to sleep. If I was left any longer I would not have made it according to Dr Lowe in the USA. He said my heart would have given out.

Please find a doctor outside the NHS if you can't find one in it that will follow this protocol. It is vitally important.

I now go to Dr Hertoghe's clinic in Brussels where they look at the bloods but not totally, the heart is listened to and muscle testing is done which is as important than the blood tests.

I'm not trying to worry you but to stop you going to where I have been.

Take care

Hypomom profile image
Hypomom in reply to Gismo333

Hi there.

What dose of t4 and t3 are you taking?

Thank you.

wadhamk profile image
wadhamk

Hi i had a total throidectomy in 2008 following acute graves, best advice try to avoid having this gland removed if poss it affects your body in so many ways and personally i was never the same after. It has taken me until 2015 via a private consultant to find out why my body feels so poorly no T3, i wish i saw him before agreeing to the surgery and wish you all the very best. Plus if you do have to have the operation do your research and find a good surgeon :)

Mmw-15 profile image
Mmw-15 in reply to wadhamk

Thank you for your advice, I am private and have been since this all started, my consultant has been great, but I will look into it all more before I decide x

faith63 profile image
faith63 in reply to Mmw-15

It really doesn't sound like your consultant is so great to us. Please..Hashi's is not a reason for removal!

shaws profile image
shawsAdministrator

It's all very well to 'whip the gland out'. As recommended above research, research, research before you do. It's o.k. for doctors to recommend the procedure if your have thyroid cancer but they haven't had theirs removed so have no idea of the struggle thousands of patients have afterwards. Precisely because they issue only one thyroid hormone replacement and it's not the same as our own thyroid hormones. The doctors rarely have any idea of how to treat and adjust the dose willy/nilly according to the blood results.

This is a link and the person has petitioned the Scottish Parliament re the present Guidelines for treating patients plus medication:

thyroidnation.com/fighting-...

mrs44mac profile image
mrs44mac

I AGREE WITH WADHAMK

I DID NOT RESEARCH AND TOOK WHAT THE DOCTORS TOLD ME AS "GOSPEL" YOU WILL BE ON A PILL FOR THE REST OF YOUR LIFE! WHAT HE DIDN'T TELL ME WAS THAT I WOULD HAVE ALL THESE SIDE ISSUES. :)

DO YOUR HOMEWORK BEFORE HAVING YOUR THYROID REMOVED .

Mmw-15 profile image
Mmw-15 in reply to mrs44mac

Thank you, after reading everyone's comments it's really made me think 😞 Thanks again x

faith63 profile image
faith63 in reply to Mmw-15

Mmw-15..are you on any thyroid meds? i never saw an answer to that. A decent dose will stop the attack on your thyroid! What is SCRP? If it is the C- reactive Protein..it is high with hypothyroidism and inflammation from autoimmune disease, that is normal. It looks as tho you are on no thyroid meds or not enough.

DRs make lots of money on operations! Of course a surgeon is going to say you need surgery!!.

Mmw-15 profile image
Mmw-15 in reply to faith63

Hi yes I'm on thyroxine 100mg ( just got reduced from 125 due to TSH being 0.07 - I'm on Vit D daily vitB12 injections, goitre hashimotis, continuous thyroiditis, had RAI in April, back to feeling like I'm being strangled again, big lump on right side again and all my symptoms have returned yet again. All I've been doing today is research research research, so much to read X

faith63 profile image
faith63 in reply to Mmw-15

Your thyroid should not be reduced for low TSH..have you had your free t4 and free t3 tested? another mistake. i believe you are under medicated.

A few months of this, really, is very little. I know it is terrible, but at least you have a chance at a normal life again, with the gland. please see Dr. Isabella Wentz's website, sign up for emails..i did.

WHY THYROID PATIENTS NEED TO WORK WITH A FUNCTIONAL MEDICINE PRACTITIONER

For those of you not familiar with Functional Medicine, according to functionalmedicine.org, “Functional medicine addresses the underlying causes of disease, using a systems-oriented approach and engaging both patient and practitioner in a therapeutic partnership”.

That’s right, a whole medical specialty dedicated to finding and treating underlying causes and prevention of serious chronic disease rather than disease symptoms. I was tickled pink when all of the presenters were talking about treating the root cause of diseases!

When I first set off to treat myself with a systems perspective and to find the root cause of my condition, I did not realize that I was using a functional medicine approach, I just believed in cause and effect.

The basic theory behind functional medicine is as follows:

Food is information. Beyond calories, the type of food you will eat will help determine if you are going to be healthy or sick. Functional medicine practitioners realize the value of a whole foods based diet as well as the role that inflammatory foods and food sensitivities can play in chronic disease.

Stress is a precursor to disease and weakens our body causing it to break down and makes us more susceptible to chronic infections.

Proper gut function is key to a healthy body.

Here is a glimpse of the information the attendees learned in the GI module:

If you work with the gut 60-70% of any disease will get better

The best way to give your patients the right treatment and diagnosis is through listening to them (I love that one!)

Treat the gut before attempting detoxification, as the gut is a main elimination organ, detoxification first may result in toxins circulating when gut function is impaired.

Irritable Bowel Syndrome (IBS) is a precursor to autoimmunity and chronic disease.

This last one really resonated with me, as I was diagnosed with IBS in 2002, Hashimoto's in 2009. Many of you may have never been diagnosed, but have had many of the symptoms. My IBS and GERD helped me connect the many dots to get to my root cause.

If we can catch IBS in the early stages, perhaps we can prevent thyroid and other autoimmune conditions. Additionally, since we understand that IBS is a precursor for the thyroid condition, treating the root cause of IBS will often result in remission of the autoimmune condition.

During the conference, three cases of IBS were presented, the root causes of these cases of IBS included:

Case #1: parasite

Case #2: pancreatic enzyme deficiency, gluten sensitivity, overactive stress response

Case #3: low stomach acid, small intestinal bacterial overgrowth

Those of you that have read my book may have already been able to work out your root cause, and many of you have contacted me with great news of the success you have had from reading the book!

But some of you may need additional guidance, and I hope that you will consider having a clinician trained in functional medicine as part of your healthcare team.

FUNCTIONAL MEDICINE CLINICIANS GET IT!

Now that I understand functional medicine, I am amazed that most traditionally trained physicians don’t recognize this links between nutrition, stress and gut imbalance that cause chronic illness.

Many of you have asked me for recommendations of doctors in your area that use the approach that I have outlined in my book, Hashimoto's Thyroiditis: The Root Cause.

I am currently building a list of practitioners that treat the whole person and have been trained in integrative or functional medicine.

If you have a great practitioner to recommend, please submit your recommendation here but for now, whenever people ask me for recommended doctors in their area, I refer them to the functional medicine website.

Warmly,

Dr. Izabella Wentz, PharmD

info@thyroidpharmacist.com

Join me on Facebook

also..Most physicians and endocrinologists will say that in Hashimoto's, hypothyroidism is irreversible and ends with complete thyroid cell damage, leading to a lifelong requirement of thyroid hormone medications.

However, this isn't true!

It has been reported that thyroid function spontaneously returned in 20% of patients with Hashimoto's.

These individuals will return to normal thyroid function even after thyroid hormone replacement is withdrawn.

How?

Studies show that once the autoimmune attack ceases, the damaged thyroid has the ability to regenerate. Thyroid ultrasounds will show normal thyroid tissue that has regenerated, and the person will no longer test positive for TPO Antibodies.

This regeneration may often be missed in adult patients because they are assumed to have hypothyroidism for life and antibodies and ultrasounds are not usually repeated after the initial diagnosis.

In addition to the ultrasound and TPO antibodies, a test can be done by administering TRH (Thyroid Releasing Hormone), which will cause an increase in T3 and T4 if the thyroid has recovered. This test will help determine if the person can be weaned off thyroid medications safely.

While this information is readily available in the scientific literature, most physicians do not attempt to administer TRH in an effort to see if patients could be weaned off of their thyroid medications.

What else are they missing?

When I was diagnosed with Hashimoto's in 2009, I was told that there was noting I could do other than take medications for the rest of my life, in increasing doses, as my thyroid continued to burn itself out...

Conventional medicine has yet to recognize the impact of lifestyle modifications that can slow down, halt or reverse thyroid antibodies.

While a lot of this information is available in the scientific literature and some progressive naturopaths, chiro's, nutritionists and alternative medicine practitioners have began implementing it with great results, these experts are often unattainable to the average Hashimoto's patient due to their extremely high costs.

Additionally, skepticism often keeps patients from reaching out to alternative practitioners.

I can't blame them...I too have been taken advantage of, swindled and promised the world by unethical practitioners who prey on sick people who just want to feel better.

This is why I, as an established clinical pharmacist, decided to take on lifestyle interventions as a personal mission. I wanted to not only get better myself, but to also bring this information into the mainstream to help others with Hashimoto's. I hope that my background and experience will encourage people to take a second look.

People are recovering from Hashimoto’s every day. Some of them are recovering by accident, and some on purpose.

I have been researching lifestyle interventions for Hashimoto's for the past three years and hope that this blog, my book and your own research will give you the tools to find and treat the root cause of Hashimoto’s so that you too can get better—on purpose!

I wish you all the best in your healing journey!

Warmly,

sig.png

Dr. Izabella Wentz, PharmD

info@thyroidpharmacist.com

Join me on Facebook

Mmw-15 profile image
Mmw-15 in reply to faith63

Wow that's great thank you xx

Yes I had them tested and both in normal range, I went to the GP because of my heart palpatations and rapid heart beat, temperature etc, she ordered bloods and then told me to see my consultant which i did a few days ago, hence the change in meds, the consultant has done my bloods again which I'm waiting on so I'll let you know what they are, once again thank you so much, I will look at all this more closely xx

faith63 profile image
faith63 in reply to Mmw-15

Then, you are not hyper, but an autoimmune flare up. This causes the heart to go crazy. Hyper symptoms, sometimes, very hypo labs. All typical of Hashi's, more reason than ever to look tat things like diet. Do you know people have stopped all these symptoms, in a few days, by giving up a particular food? It is possible for all of us. I am not one of them, but maybe you are. I was told that dairy was the other, besides gluten.

My frees would be all over range and then go all under range. By lowering your dose, you are more likely to have more attacks. Adding t3 helps this, but in the UK. especially, they won't consider it.

Mmw-15 profile image
Mmw-15 in reply to faith63

Thank you so much for all your advice and help you have been great, I have been gluten free, but will look into maybe dairy as well, I suppose everyone is different and I'll only know by trying, thank you xx

faith63 profile image
faith63 in reply to Mmw-15

After trying many things, i chose to get food sensitivity tests, like the Dr. whom i sent you info from, suggests. You would be surprised. Many have issues with eggs, chicken, nuts, coconut..my son can eat barely anything.

Clutter profile image
Clutter in reply to faith63

Faith63, NHS surgery is free at the point of need in the UK. NHS surgeons are salaried and don't make money out of performing operations. UK patients are more likely to be denied, or have surgery delayed, than be referred for unnecessary operations.

faith63 profile image
faith63 in reply to Clutter

Well, i am still of the opinion, that she is being improperly treated. Hashi's doesn't require surgery.

Clutter profile image
Clutter in reply to faith63

Faith63, you'd not find an NHS surgeon prepared to remove a thyroid purely because of Hashi's. Somewhere on the thread Mmw has said her doctors are concerned the thyroid will turn nasty. That usually means there are nodules suspicious for malignancy or growing into nearby organs which need removing.

faith63 profile image
faith63 in reply to Clutter

She didn't say anything about suspicious nodules or anything. Besides, they can do a needle biopsy and ultra sounds to determine this, you don't need to remove it. He seems in a hurry to remove it, for some reason, after just a few months of symptoms, which may not even be Thyroiditis anyway, but her dose was reduced due to low TSH, with normal free's..another reason to question the care she is getting.

greygoose profile image
greygoose in reply to faith63

I totally agree, faith, I Don't really think he knows what he's doing.

Margo profile image
Margo in reply to faith63

Well said faith63, operation = £ in the surgeon's pocket.

peanutduck profile image
peanutduck

I had part of my thyroid gland removed in 2009 and the remaining half in 2013. In both cases the removal was due to benign lumps on my gland that were growing rapidly and affecting swallowing and breathing so there was no real option for the gland to remain. I was told that a pill a day would be adequate and I would feel fine, and some people are fine, I am close to that but not quite.

The reality of this is that having been on a dose of 175ug I didn't feel the same as I did prior to removal. Anxious, depressed, lack of confidence, irritable, spells of fatigue and brain fog. Eventually a sympathethetic doctor referred me to an unsympathetic endocrinologist who reduced my dose to 150ug in January and 125ug in June. The majority of issues have settled down but the brain fog and fatigue continues to a degree. That said, I am still able to do what I did prior to the op in that I can complete a two week backpacking trip, walking 10-20mils a day carrying a rucksack of around 16kg, I can still road cycle doing miles of 30-60. The downside to all this is I take longer to recover. I am currently looking at increased doses of vitamin d and b12 to see how that aids recovery and energy levels and particularly brain fog!

This forum is a very good source of information from like minded individuals who are able to offer advice, support and guidance through their own experiences. You won't find too many people on here who are perfectly OK following thyroidectomy as they just get on with their lives and don't visit these forums. Certainly I have been more enlightened by being on here and have discovered that people have very similar stories to tell. Doctors and endocrinologists do not fully understand the thyroid gland and how a person is affected following removal. That said, do not worry, it is a relatively simple procedure that has been performed countless times and is the best course of action if it is problematic. Had my gland been left then the benign lumps may have turned cancerous.

So, don't worry and good luck. :-)

Mmw-15 profile image
Mmw-15 in reply to peanutduck

Thank you so much, I've been getting myself rather confused, so many different views, I'm already on Vit B12 injections and Vit D daily and I've been on them for the last year, it definitely made a difference when it got in my system. I've been doing research all day have learnt so much more, this forum has been great and so many lovely people have taken time to write to me. Thank you for your reassurance x

Clutter profile image
Clutter in reply to peanutduck

Peanutduck, delayed recovery after exercise is often due to low T3 levels. Thyroidectomised patients thyroidal conversion of T4 to T3 and often won't achieve sufficient conversion on Levothyroxine only. If you have low FT3 you will benefit from the addition of Liothyronine (T3) to Levothyroxine. Some CCGs insist on endo recommendation of T3 before GPs can prescribe T3, and others have prohibited prescribing T3. If you are blocked in this way it is worth considering self medicating.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

peanutduck profile image
peanutduck in reply to Clutter

Thank you Clutter. It is only really noticeable following prolonged exercise, that said I do experience what I would describe a power dips mid afternoon when I'm at work, although that seems to be related to the amount of sleep I had the night before. I have only had one FT3 test which came back as 4.3 pmol/L (range 3.6-6.5). I have considered private testing so may do that if I get no joy down the current route. What is CCG by the way?

Clutter profile image
Clutter in reply to peanutduck

Peanutduck, 4.3 is less than mid range which may be why you are having energy slumps. You need a higher dose of Levothyroxine or the addition of Liothyronine (T3) to raise your FT3.

CCG = Clincal Commissioning Group.

_____________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

faith63 profile image
faith63 in reply to peanutduck

peanutduck..as someone who has had possibly 3 unnecessary surgeries, due to my poor immune system, endometriosis, a hysterectomy due to growths and 1 for sure, do to hypothyroidism, an ovary removal from a cyst, which is a hugely common hypo symptom, i too believed my doctors. Now i know better. There is no guarantee any nodule or cyst is going to do anything. If i had known, what i know now, no way would i have had those surgeries! I would have worked to restore my immune system. The doctors know nothing about that, And, as Cancers go, Thyroid is the easiest to treat. There was no hurry to do anything, yet my doctors made me think i could die of a Cancer, if i didn't have the procedures. In my case, they had plenty of money to be made. Also thyroid hormone, shrinks nodules and cysts. I am appalled by the lies i was told..

Clutter profile image
Clutter in reply to faith63

Faith63, Papillary cancer is easy to treat if it hasn't spread beyond the thyroid gland, but follicular types are more aggressive and may require more extensive surgery and more aggressive follow up treatment. Any cancer which has spread to the lymph nodes means some or all of the neck lymph nodes need removing and there is a high chance of metasasis throughout the body. Part of my treatment was high dose RAI to ablate remnant cells and while it reduces the chance of thyCa recurrence it significantly increases the chances of me developing Leukaemia within 20 years. Medullary and anaplastic have a very poor prognosis, usually less than 12 months for anaplastic.

faith63 profile image
faith63 in reply to Clutter

what i meant is, i have been scared into surgeries, i didn't need. Of course, i meant cancer that hasn't spread,..it is normally slow growing and a relatively simple biopsy, can tell a benign nodule, from cancer..

greygoose profile image
greygoose in reply to faith63

I Don't know anything about cancer! I'll say that straight up. But, I too have had three surgeries that could have been avoided if my doctors had known anything about thyroid : hysterectomy, gall bladder removal and an op for a slipped disc that I didn't have.

Surgeons can be very persuasive, and as we know little to nothing about all this, we can easily be taken in and believe the surgery will be the solution to all our problems. Well, none of mine were. They all made things ten times worse.

Margo profile image
Margo

Same as you greygoose, unnecessary surgery made me much worse, money in the pockets of surgeons though.

peanutduck profile image
peanutduck

Faith63, sorry to hear that, it does seem to be that surgeons are eager to delve in without looking at the alternatives. I really hope that it isn't money driven though.

In my own situation the nodules on my gland made swallowing and breathing difficult and as someone who hates the thought of surgery I sought advice from several sources, two consultants at the hospital, family GP, retired doctor who is a family friend and an ex Harley Street doctor, all of which suggested that surgery would be the option, it could have been left but no one offered alternatives in my case.

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