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[Shellybob197t]

I was diagnosed with thyroid cancer after the birth of my son he’s now nearly 21 I have been through hell especially the first 10 years the medication just didn’t work I couldn’t stay awake I’d fall asleep sat up in the middle of a conversation my partner had to sit with me while I ate I was bedridden for years my symptoms haven’t really unnoticed they are all still there the bad skin hair falling out depression anxiety the cold causing pain all through my body shaking like I had a bad fever and much more I’ve spent these 20 years trying to get somebody to listen to me but they just refer to my blood results that are good is this it is this all I can expect for quality of life forever I’ve lost everything

[greygoose]

Hi Shellybob197t, welcome to the forum.

Doctors are pretty useless with thyroid. They just don't understand anything about it. Very badly educated and too blasé to do any extra learning. So, we have to look after ourselves I'm afraid.

First step is to get hold of your blood test results and learn to understand them - we're here to help you with that - because not only are doctors useless with all things thyroid, they don't really know how to interpret blood test results, either. So, if you haven't got copies, ask at receptions for print-out for as far back as possible. Then post them on here with the ranges, and we'll help you with them. You need to know exactly what was tested and exactly what the results were. 'Good' is just their opinion - which is pretty worthless - you need to know the numbers!

There could be all manner of problems, such as poor absorption in the gut, or at a cellular level. Could be you're a poor converter: levo is the thyroid hormone T4, which is basically a storage hormone that doesn't do much until it is converted into T3. Could be you're not taking it correctly (on an empty stomach leaving at least an hour before eating or drinking anything other than water, and at least two hours away from other medication). Could be that you're not testing correctly (early morning, before 9am, fasting over-night, and leaving a gap of 24 hours between your last dose of levo and the blood draw). Doctors rarely tell you these things, probably because they don't know themselves. But it all affects the blood test results plus the way you feel.

So, the sooner you get those blood test results, the sooner we can set you on the path to a healthier life.

[Shellybob197t in reply to greygoose]

thanks so much for your reply and definitely will get my blood results and put them on here I’ve spent years trying to get a dr to listen to me I was so poorly after my op for years and years I lost my children because I physically couldn’t care for them anymore every professional I saw looked at me like I was crazy couldn’t understand why I was so poorly and for a while I did give up but not any more

[greygoose in reply to Shellybob197t]

You're welcome.

[humanbean]

Welcome to the forum.

Your experience of thyroid disease and all it entails sounds awful, but sadly is not uncommon.

There are a lot of factors to being well and feeling well with thyroid disease. It can seem overwhelming to decide what to do first, so just to get you started...

The things you need to find out first are your Thyroid Function Test (TFT) results for, say, the last 2 - 3 years. These days the NHS will usually only test TSH (Thyroid Stimulating Hormone), but older results might include TSH, Free T4 (also referred to as FT4), Free T3 (or FT3). You are legally entitled to have copies of your medical records, including your test results. So be specific in what you want and get copies. The receptionists are the ones that will supply the copies, NOT the doctor - you definitely don't need an appointment to get your results, and asking for one will make the staff annoyed because they consider it a waste of an appointment.

The receptionist is usually required to ask a doctor for permission before printing anything out of your records. You could phone up first, ask for what you want (for example, the last three years of blood test results, you don't necessarily have to specify just your thyroid results - the others might turn out to be helpful too ), and say you will come and pick up the copies, so what day will they be available? Make sure that you have something like a driver's license or a passport, plus a bill with your address on it to prove you are the person whose results you are collecting. Bear in mind they may take copies of your proof of ID.

You need to know if you are under-medicated, and the historical results might help with that. Unfortunately, knowing only the TSH is often not helpful, unless it is very high. A high TSH is indicative of under-medication.

If you don't have many results or they are TSH-only it is possible to get thorough testing done privately for a fee. Before you order a test of any kind make sure you ask on the forum for information before spending a single penny. We can tell you which tests are worth doing, how to do them, and if any discount codes are available.

...

One thing that isn't mentioned in a lot of info about the thyroid is that many people end up with low stomach acid. This then means that they end up with low nutrients. The ones that get mentioned on here the most are Vitamin B12, Folate, Vitamin D, and Ferritin (iron stores). These can be tested along with the thyroid with finger-prick samples of blood sent off to a lab. There is no need to pay for the services of a doctor.

...

The next thing to consider (but not for a long time) is cortisol, which is one of the stress hormones. Levels of thyroid hormone and cortisol are related and a common symptom with cortisol issues is what many people refer to as "internal vibration". This can occur with both low cortisol and high cortisol. However, optimising your thyroid hormone levels and your basic nutrients will affect your cortisol, so it isn't worth testing it or treating it until you have made some progress in fixing thyroid and nutrients.

...

Another thing to point out is that none of this happens quickly. Making changes to thyroid hormone levels tends to be very slow. Raising nutrient levels can take a long time too.

[mstp in reply to humanbean]

Just to clarify the cortisol point made by humanbean a little..... the reason it is relevant here is that, if our bodies are not receiving adequate thyroid treatment it means they are stressed so the cortisol increases. Good luck.

[Shellybob197t]

thanks so much it’s a lot of information but I’m taking it in I feel silly that I just went with what the doctors would say and I haven’t joined a group like this before I joined because the thought of my health being this bad for the rest of my life terrifies me I want to educate myself and do everything I can to start feel even a little normal if that possible 🙏

[Hectorsmum2 in reply to Shellybob197t]

I trusted doctors for 30 years when they said my bloods were normal and ended up going through two pregnancys with all kinds of deficiency's that should have been picked up. I was unnessasarily poorly for most of my adult life due to stuff that could have been easily fixed with a few thyroid hormones and some iron and vits. It will probably take a little while for you to get well again but you can and will now you have access to some good advice.

[jgelliss in reply to Hectorsmum2]

FrHectorsmum2 so well answered. Thank You. Dr's know so very little about thyroid dosing as GG always reminds us but even less knowledge when it comes to nutrients that help our thyroid meds work better. In my personal thyroid journey I discovered that till my nutrients were not up to par my thyroid meds did not work to the fullest potential. Especially T3 meds.

[Shellybob197t in reply to Hectorsmum2]

I have literally been to hell and back spent at least the first 10 years of the 20 years it’s been since I had cancer fighting pleading for somebody to listen to me and believe that the symptoms I’m dealing with are very real to be told that they could not understand why I was so poorly and time and time again being told my levels are good the thing I struggled with the most and still do is the chronic fatigue constantly asleep I would wake after like 12 hours try and get up and about but I literally would fall asleep constantly sometimes while sat up talking having to be woken to eat and supervised while eating because I would fall asleep with food in my mouth even the consultant at Christie’s that I saw as an outpatient would say things like are you sure your taking your medication and the right amount nobody who treated me while I had cancer treatment and after ever warned me about 1 symptom I might experience after my thyroid removed not even a leaflet when I had cancer I felt the healthiest I’d ever been as soon as my thyroid was taken out my life changed completely

[Hectorsmum2 in reply to Shellybob197t]

thyroid care in this country is appalling I am sorry you have been through so much.

[McPammy]

My sister has had thyroid cancer she has to have her TSH suppressed to ensure the cancer doesn’t return. You are probably being treated the same. She is taking levothyroxine T4 medication only. Her T4 blood results are always over range and therefore over medicated deliberately. Her T3 is quite low but the NHS will not routinely test her T3 as they refuse to give her a trial on the T3 medication due to the cost of it. She would benefit from it if they’d only prescribe it. She has had many issues over the past decade or more since her thyroid cancer diagnosis and removal of her thyroid. I spoke briefly to my private only endocrinologist about her NHS treatment, his reply was that her TSH doesn’t need to be suppressed, it needs to be a low normal. Having a suppressed TSH can lead to many health issues for some people. I do know that if my TSH is suppressed I feel dreadful. So, please get your blood results from your GP’s receptionist and post those on here. They’ll give you a print out of them. Also register, if you haven’t already, for Patients Access that way you can view your test results amongst many other things on line at your leisure. The information belongs to you not the NHS my gp informed me of that some years ago. It’s important to try and understand and educate yourself about your blood results and this forum will definitely help you do that. I use to always believe my Drs then realised that they truly didn’t have much of a clue about the thyroid. I have under active thyroid or the proper name Hashimoto’s disease. My blood results had been wrong and I had many issues in over a decade and no Dr twigged. I went to see a private only endocrinologist and he recognised my condition and put it right almost immediately. I lost all that time of poorer health when it didn’t need to be. My sister is still stuck in that place as she still believes the NHS Drs and won’t go private. But we are now opposites in our health. I’m flying and she is still struggling. It’s all about getting your medication right for you. And unfortunately the NHS don’t seem to understand the thyroid except talking about whether or not your bloods are in range. The range is set too wide for most people. It’s about how you’re feeling not ranges. Get those results. And in thyroid cancer patients you must do your blood test ‘with’ taking your meds prior, as the results will always be too high but you don’t want to be sky high and flooding your endocrine system with levo. If you didn’t take your levo before a test they may end up increasing your levo and you don’t want that! They and you definitely need to know your T4 levels highest point and so you should take your levo 2hrs prior to your blood draw. I’m stressing this as thyroid uk suggest not to take meds for everyone on here but thyroid cancer diagnosis you ‘must take’ levo prior to blood draw. I do both ways so I know if I’m too high or too low. I must keep my TSH around 1.00. Your journey sounds awful for you and your family. Your Drs I believe are neglecting your needs and don’t fully understand the importance of balancing your medication and T4 and T3 hormones optimally. Once you’ve checked your thyroid results then check your vitamins D, b12, ferritin and folate also as often people with thyroid disorders can have issues with these very important vitamins.

[Hectorsmum2 in reply to McPammy]

I agree with most of what you say but be aware that lots of people do not feel well unless tsh is suppressed and if you are one of those people taking levo two hours before a blood test might skew the results the wrong way. It is a matter of learning whats right for you, something doctors seem to have no comprehension of.

[McPammy in reply to Hectorsmum2]

I do bloods both ways with and without meds. I’ll do with then three months later without. Been doing that now for at least 2 years. I get my bloods done every 3 months without fail by my gp.

[Shellybob197t in reply to McPammy]

Thanks so much for taking the time to reply it’s so reassuring that what I’ve been through is a struggle that other people have been through I’m finding it so hard to comprehend why I have been let down so badly by professionals so much so I actually convinced myself it was normal to be this way after thyroid cancer and basically excepted this was it for me and how my life would be

[McPammy in reply to Shellybob197t]

I feel there are so many people with thyroid conditions having been let down by the NHS. I really don’t know why they are trained so poorly or they just dismiss us and believe we are moaning about nothing when in-fact what we live with is pretty bad in lots of cases. Last week I was out having lunch with 2 A&E nurses. They asked me how I was. When I said I had a thyroid condition they just batted that away with their comment ‘oh you get tired’ and looked away. I thought they haven’t a damn clue. I asked them what they knew about T3 and if a patient presented themselves saying they had a T3 issue would they know how to treat them. They both looked blank and said no they’d never heard of T3. When I said I had to go private to be diagnosed they just rolled their eyes, like I had been over reacting. These are the people in our NHS that we seek help from. I was taken to A&E a few times in 2018 I kept collapsing, no one then had a clue either. Thank god I found this fabulous site and was advised to seek private help. Then I was diagnosed. Given the correct treatment and now I go the gym 4 times a week and fully recovered.

I’m guessing with you having thyroid cancer you have to keep your TSH suppressed. Some people don’t do well suppressing their TSH As it can bring on all sorts of issues over time. My sister had thyroid cancer and she struggles.

[SlowDragon Administrator]

welcome to the forum

How much levothyroxine are you taking

Which brand of levothyroxine

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.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still 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.

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid

When were vitamin levels last tested

What vitamin supplements are you taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[pennyannie]

Hello Shellybob and welcome to the forum:

Living without a fully functioning working thyroid is no fun and living without a thyroid no walk in the park - especially when the NHS believe treatment with T4 Levothyroxine solves all ones health issues and an easy fix.

The thyroid is a major gland responsible for full body synchronisation of your physical, through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

A fully functioning thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.

The body runs on T3 the active hormone - and not T4 which is a pro-hormone and needs to be converted in your body into T3 as and when needed - and just firing up the body everyday, with a heart beating, and body repairing and replenishing itself with nutrients extracted from food broken down and ingested with a bowel movement moving and a brain thinking takes energy and read ' just to function ' and average person needs to find / convert / make around 50 T3 daily - just to function.

Your ability to convert the T4 into T3 can be compromised by non optimal levels of core strength vitamins and minerals - ferritin, folate, B12 and vitamin D and down regulation of T4 into T3 can also be caused by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.

Some people can get by on T4 only :

Others need the addition of a little T3 ( likely a similar dose to that ' lost ' when the thyroid was lost ' - which then kick starts the process of metabolism and conversion of the T4 into T3.

Some can't tolerate T4 at all and need to take T3 only - Liothyronine.

Whilst others find their health improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

Currently your NHS doctor can only prescribe T4 - Levothyroxine and likely anti depressants if you continue to ask for help or an explanation as to why you feel as you do -

which leaves one thinking it's all in your head and all your fault - it's not - and you can come back from where you are with all this with some help and reading on this amazing forum :

First and foremost as others have already said we need to see some blood test results and ranges - and this is where we all start off on our journey back to better health and well being .

It's a bit like a jigsaw puzzle with no picture - but slowly ' stuff sinks in ' - and a picture emerges - of where you are and your next best steps back to better health - and forum members here can help and support you through this process :

When I joined this forum there were 15 thousand members - now 8 years later we are now 135 thousand which tells it's own story on the lack of understanding and treatment options currently available within the NHS primary care system.

[Shellybob197t in reply to pennyannie]

I have learned a lot already from joining this forum I do feel regretful that I haven’t educated myself about all things thyroid until now I just trusted in the doctors and genuinely began to feel I was going crazy I was fobed off time and again for so long I did give up I have spent the last 20 years barely existing I had to sign my children over to social services because I couldn’t physically or mentally care for them it was the hardest decision I’ve ever made if only I’d fought harder to be heard

[pennyannie in reply to Shellybob197t]

I doubt you were well enough to have changed what happened -

but you are here now and with some reading, help and support from forum members we can work towards getting you better thyroid health and well being -

It took courage for you to write what you did - this is safe forum - and there is always understanding and help here.

[Panda_26]

Welcome and hopefully seeing those comments you'll feel reassured you'll find some answers here. I too lost my thyroid back in 2003 to cancer. I had two young children to care for , and looking back a lot of it is a blur.. I've had to educate myself on how to get well, - and gps and even NHS endos along the way have been little it no help to me. Labelling me as having fibromyalgia, and doing little else to help. This forum has been vital in getting information that has helped me enormously figure stuff out at various stages.

Good luck and hopefully this is the beginning of you getting your health back ! 👍😍

[Batty1]

I also had thyroidectomy for cancer and I share your frustration with quality of life after the “best cancer” you can have ….I hate when doctors and people in general say that if you end up with cancer thyroid is the best to have …. Actually it’s the worse … I don't have any answers for you just know lots of us here understand the horror story of being thyroid-less and dealing with moron doctors who don’t know how to treat it properly or care enough to try something different.

I wish I had a Time Machine!

[Shellybob197t in reply to Batty1]

I just don’t understand why the consultant that I used to see regarding my thyroid or lack of one didn’t understand or acknowledge that my symptoms and my poor health were a direct result of having my thyroid removed why did he make me feel like it was all in my head I was never given a straight answer or explanation or even a bit of hope that my health would improve as my body got used to the medication I’m so angry and feel let down

[Batty1 in reply to Shellybob197t]

He didn’t entertain your issues being directly related to your thyroidectomy because that would mean he/she would actually have to become a thoughtful human who understands that people without a thyroid are generally dissatisfied with their current treatment and seek to feel as close to normal before the surgery.

Doctors can’t connect dots when it comes to health issues and thyroid especially if the bloodwork doesn’t show any thing.