20 years on levothyroxine but now confused by everything...

[Jelanthra]

I'm new here but have been reading around the posts but would really appreciate some advice.

I'm 63 years old and have been taking levothyroxine, pretty much on an unchanged dose for 20 years at 110 mg (I have to alternate 100 and 125 as they don't manufacture 110 any longer.)

Living in Portugal for 10 years till last March, I always had a blood test on an empty stomach in the morning without taking my levothyroxine - they routinely do a full chloresterol as well, so I think that happens by accident! But moving to the UK, I'm assured by my GP that there's really no need to fast etc.

Also, in Portugal , I was always given the full results, with all the vitamins etc etc- Now I'm simply told everything's fine and within range, so I've no idea what exactly has been tested.

I suppose this would be ok just to carry on and accept the GP's better judgement, but just lately everything is going wrong.

Acid reflux has gotten worse. PPis and H2Blockers made it worse, not better (suggesting low acid?) The GP thinks it's stress. She thinks I should be taking anti-depressants.

A test for Coliac's , though negative, actually threw up kidney and liver problems.

The kidney problem might be due to borderline high blood pressure.

A heart murmur has been detected.

For a few years now I've had brain fog? I'm lucky enough to have retired early but I don't think I could have kept down a job because of it. I have trouble understanding new stuff - including all the thyroid blood test! Yet once, I contemplated writing a novel. Now I just flake out in front of the TV every night and I'm lucky if this gets written spelt properly!

Reading around on the internet, don't all these symptoms scream out that I might have Hashimotos?

I vaguely recall my GP in Portugal saying I had an autoimmune problem though I don't know what that meant or how he knew. How do thyroid blood tests show this? Is it by ultrascan? I'm having a scan done next week - it was routinely done in Portugal every year as I have a couple of nodules but here, I had to press for it.

I queried the UK GP about Hashimotos and she says they don't bother trying to find out in the UK as people so often have hypothroidism and Hashimotos together so there's little point.

But it does feel like I'm having all these symptoms assessed and tested, when really the root cause might be my thyroid. And though it might be "in range" it's not so for me?

Any advice anyone? Or do I just accept I'm getting older?

[greygoose]

Hi Jelanthra, welcome to the forum.

Your GP sounds like a bit of a dead-loss, doesn't she! She doesn't know anything about thyroid. I'm sure she believes that there's no need to fast, but eating before the test can affect the TSH. And, as the TSH is all they tend to look at, it is best to have it as high as possible. Which also means having an early morning test, because TSH is highest in the morning - before 9 am - and drops throughout the day, possibly after eating, and certainly after drinking coffee.

To get the most accurate FT4, you should leave a gap of 24 hours between your last dose of levo and the blood draw.

Hashi's and hypothyroidism are not two different diseases, hypothyroidism is the result of having Hashi's. As you say, it's an autoimmune disease where the thyroid is slowly destroyed by the immune system. And, it's diagnosed by testing TPO and Tg antibodies - although absence of these antibodies doesn't automatically mean you don't have it.

A scan would show if there's been any damage done by Hashi's, yes.

A doctor in the UK will never just give you your results, most doctors would prefer you don't know too much about your condition because it would high-light their lack of knowledge! It's best to ask the receptionist for a print-out. It is your legal right in the UK to have one. But, you'll probably find that they only test the TSH!

Reading around on the internet, don't all these symptoms scream out that I might have Hashimotos?

Not necessarily. They do scream out hypo, but you can be hypo without having Hashi's. In any case, the treatment would be the same.

[Jelanthra in reply to greygoose]

Thanks for replying!

Unfortunately, I'd have to wait another 6 months for another appointment but I'll try and remember to fast. No way could I get an early morning appointment!

Hashi's and hypothyroidism are not two different diseases, hypothyroidism is the result of having Hashi's.

See how I'm getting all confused?

🙂

And this is just basic stuff for a lot of people here. TSH, TPO, and tg antibodies is just all gobblygook to me. I've just gone sailing on for years and just accepted I was safe in GP's hands and they knew best. Now with all these things going wrong, I feel as if it's too late to now do anything about it. The damage has all been done. How on earth can I convince a GP that the root cause is my hypothyroidism?

When I go for my scan I'll have to make sure I ask enough questions. I have scan images from 5 years ago to compare but others are still with the hospital in Portugal. So they'll have to do.

[greygoose in reply to Jelanthra]

See how I'm getting all confused?

I don't think it's you that's confused, I think it's your doctor!

It may seem like all gobbledegook at the moment, but keep reading and you'll soon get used to it. And end up knowing a lot more than your doctor!

How on earth can I convince a GP that the root cause is my hypothyroidism?

I don't think you can. But, as they say, the proof of the pudding is in the eating. In other words, get your thyroid levels sorted and the other problems will probably just go away. Then, she'll have to believe it. Any chance you can change doctors?

[Jelanthra in reply to greygoose]

Thanks for getting back to me.

I could ask to see another doctor - I had thought about it - she's one in a dozen sharing three clinics but I rather suspect they all have the same way of treating their patients. And I think she thinks she's doing her best to help - getting scans and bloods and hospital appointments and writing out prescriptions for all the things going wrong in the middle of a pandemic! And at the end of the day, symptoms still do need addressing. The thyroid issue possibly needed sorting quite some time ago, in Portugal, or even further back, for everything to be going wrong now and I can't turn the clock back. Feel a bit helpless really...

[greygoose in reply to Jelanthra]

No, you can't turn the clock back, but it's not too late. Sort the thyroid out and the rest will probably take care of itself. Thyroid hormones are needed by every single cell in your body to function correctly. If you are deprived of adequate levels for many years, all sorts of things will go wrong. And, the priority is to raise the levels first, before doing anything else.

[Noelnoel in reply to Jelanthra]

Jelanthra, I hope I can reassure you by saying that it took me a long time to even start grasping the technicalities and terminologies and I’m still learning. Unfortunately, like you I also forget things and even when I’ve understood them I don’t understand them for long because my grasp is very tenuous. I end up either trawling through my old replies or asking the same question again. If the powers who oversee this site think I’m weird or dim, nobody ever says so

However, people like greygoose, SeasideSusie, SlowDragon, hellvella, humanbean and many others are very knowledgeable and are here for people like you and me. So, don’t be afraid to keep asking and asking again because they’re very supportive and many of them have been through what you are going through. I never feel I’m alone with this forum and I will be forever grateful to those who have contributed to me getting closer to good health

The other thing you mentioned I think, was getting an early morning appointment. If you go to your local hospital pathology department you have your blood test done at whatever time you arrive. It’s a queueing system so if you want a test done before 8.30-9 I suggest you arrive early to make sure you’re one of the first. That way an appointment isn’t required. If you prefer an appointment though you can still get an early morning one, it might just mean you have to wait until one becomes available

[Jelanthra in reply to Noelnoel]

Unfortunately, like you I also forget things and even when I’ve understood them I don’t understand them for long because my grasp is very tenuous.

Yes, this is exactly how I am! And it's happened today. I know that there's something that clinched it for me that I might be undermedicated but I'd forgotten what it was.

Suddenly it came to me - I have a constant sore tongue that I've always blamed on acid. And a feeling that my tongue is too large for my mouth and I'm constantly biting it, so it must be quite swollen. It's there always but I'd forgotten the eureka moment when I, researching around, accidentally discovered that an enlarged tongue can be due to hypothyroidism (and a severe case at that) How can I develop a symptom of hypothyroidism if I'm taking the correct dose of levothyroxine according to blood test results?

[Noelnoel in reply to Jelanthra]

I can’t answer that question for you because I’m no authority but if you post it here, someone will come along

And you see? I’ve learnt something form you. I too have had a swollen tongue for years that I’m always biting. I knew it was because of hypothyroidism but I had no idea it was because of “severe” hypothyroidism! I wonder what I can do about it because I’ve been on metavive for years and although most of my symptoms have improved, the tongue is still very swollen

[fuchsia-pink]

I'd get those blood results - and see exactly where "in range" (dread phrase) you are You are legally entitled to your blood results without giving a reason (although it's usually easiest to say "for my records" or register for on-line access.

This will also show how much (or how little) has been tested. As greygoose says, they will have tested TSH (and be obsessed with this) but this isn't enough. Full testing would be TSH, free T4 and free T3 (your actual thyroid hormones), thyroid antibodies (which, if raised, would prove that you do have Hashis, the biggest single cause of hypothyroidism) - and ideally also key nutrients - ferritin, folate, vit D and B12. I have had some success by saying that these are the tests recommended by Thyroid UK, but if the GP can't/ won't do them all, you will see LOTS of posts here about private testing.

Once you have your results, post them (along with the lab ranges which vary from lab to lab) and the lovely people here will help you to understand them and (almost certainly) how under-medicated you are.

It's possible to be hypo AND fully well - but you nearly always only get there if you take charge of your testing and dosing ...

Don't be disheartened - this is a kind, helpful forum. And if you don't know too much about the jargon, check out helvella 's excellent glossary (saved in "pinned posts"). Good luck x

[Jelanthra in reply to fuchsia-pink]

Thanks for your suggestions. Yes, you do seem a kind bunch - I was surprised by the response. I'll certainly be going to the helvella link.

I had seen a lot of folks on this site saying they'd gone for private results so, it's a shame that I'm forced to do this in the UK but it looks as if it's the way to go.

As I said though, in my original post, I was automatically shown a full results test every 6 months in Portugal and everything was always in range. That was over a year ago though and my GP has only recently seen the kidney and liver readings aren't right so perhaps the thyroid isn't either? So a sudden thought, why didn't I point this out to her at the time?!!! Thinking as I write here!

[fuchsia-pink in reply to Jelanthra]

"In range" isn't anywhere near good enough

For example, the range for free T4 might be 12 - 22. If your result is 12.5 you will probably feel awful. If it's 19.5 you will likely feel much better - but both are "in range" and so acceptable to a half-asleep GP.

Most of us like TSH low - less than 2 and often less than 1 (mine is MUCH less); free T4 and free T3 high in range - at least 2.3 through; vit D in three figures and other nutrients a good half-way through range.

But you're absolutely right: we don't think of things when it's happening, only afterwards, so please

* don't be bounced into a blood test after 10 am - your TSH is highest first thing

* don't be bounced into a dose change until you have seen the actual results and lab ranges

* absolutely don't be bounced into anti-depressants if your problem is really low-in-range free T3

* if your GP is one of those who thinks we hypos are all silly, hysterical, neurotic little girlies - take an adult MAN with you to appointments - and they suddenly behave MUCH better (even though we're not in the 19th century any more). Or another adult if you don't have a convenient bloke x

[Jelanthra in reply to fuchsia-pink]

I had thought to take husband with me but I don't think it's allowed due to Covid. And because of Covid, most appointments are on line.

I used to always take my husband with me in Portugal. He acted as my translator as my poor brain just couldn't learn Portuguese as much as I wanted to though in the first couple of years, I managed just fine. )-:

[Sharoosz in reply to fuchsia-pink]

I agree, don't let yourself be pushed into anti-depressants. I know someone who found out he'd been taking those for 20 years (how you wouldn't know what you are taking is beyond me but whatever...) His health was just destroyed and it's taken two years and many tests in two countries to find out what's wrong. He's still not well. My dr. also asked if I wanted SSRI's because I was tired. It's like candy to doctors but it's very bad for patients who don't need them. Take a walk every day, think about positive things, keep your stress down as much as you can, find diet and supplement advice here and slowly get back to better health. We are with you!

[Jelanthra in reply to Sharoosz]

I really think the best cure for everything is take a walk!

[Sharoosz in reply to Jelanthra]

That, and an apple a day!

[shaws]

I wouldn't rely upon doctors to know much about how to diagnose/treat patients. I had to diagnose myself and by that time the TSH was 100 and GP phoned to tell me that my blood tests were fine and that there was nothing wrong with me. I knew nothing then at all about hypothyroidism,

I know for a fact that none I consulted, private or NHS could diagnose my symptoms whatsoever and the advice to 'fast' before a blood test for thyroid hormones is correct i.e. about the gap between last dose and test and as early as possible appointment. I even underwent an operation to remove a 'web' from my throat and they hadn't the courage to tell me I had no such thing. I got no money refunded and no diagnosis.

Once-upon-a-time all doctors were aware of the clinical symptoms and we got diagnosed through them and given a trial of NDT (natural dessicated thyroid hormone) which was increased slowly until patient's symptoms.

NDT hsd now been removed from the NHS through lies by those who make the decisions . These are the people who now know no clinical symptoms at all and rely upon a blood test alone. Unfortunately nowadays the medical professionals know few clinical symptoms and only go by the TSH when it reaches 10.

greygoose has stated her good and knowledgeable advice.

[Alanna012 in reply to shaws]

That story is shocking Shaws!!

And you are so right about them not knowing what the signs of hypothyroidism are! I've sat in front of the doctor: puffy red face, dry eyes, mouth and skin and hair dropping out, crying from exhaustion and been told I need anti-depressants!

But based on my anecdotal experience it is worse than merely not recognising the signs, there seems to be a strong foundational belief that because hypothyroidism is common and is 'treated' with one pill it is not a serious disease with serious consequences for quality of life, it is the 'easy' autoimmune disease, with the autoimmune part having no consequence at all. I have never received a leaflet outlining all the various complications of having Hashimotos. It's nothing complicated. There are worse autoimmune illnesses to have. If there are complications YOU and not the disease are the confounding variable.

Doctors encourage this same attitude in their patients who respond well to treatment, telling them it's nothing complicated and all they will ever need is an adjustment in meds at most. So many go away ignorant about what physical symptoms to keep an eye on or the importance of adequate vitamin intake. But carry the advice forward.

I have seen conversations away from this forum, in non-medical chatrooms, where people doing well on standard treatment have thoroughly imbibed this message and tell others looking for help, that it's 'far better to have hypothyroidism than hyperthyroidism', as 'hypothyroidism is easy to treat' and involuntarily gaslight people asking for help, telling them it's just a matter of getting the right dose and what are they complaining about? They themselves have it and feel great on a dose of 123456 Levo, no problems at all. Doctor is fab. What are you complaining about?! No your heart problem is not related.... they themselves had a heart problem long before they were diagnosed. It just runs in the family.....you have acid reflux? That's not related either, stop eating spicy foods silly. Miscarriages? Never heard of it as an issue as long as you're taking your Levo. I have 3 healthy children and that's without even being treated.... Fibromyalgia, ME CFS? Coincidence. We just have to accept these things....

I no longer bother to intervene as these ones turn on you for 'fearmongering'

[Jelanthra in reply to shaws]

It seems that as long as you're not falling asleep over your lunch, like I was 20 years ago, then you're fine. But if I'm suddenly logging up these other problems then alarm bells should be ringing - I feel as if I've all the symptoms of an undermedicated thyroid. These are the major ones. I have a list of minor ones that never have gone away in all the 20 years like breaking hair especially.

[SlowDragon Ambassador]

Just underline exactly how inadequate thyroid care is here in the U.K.

First step is to get hold of recent test results from GP

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

healthunlocked.com/thyroidu...

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

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

Pretty likely GP will have only tested TSH, obviously completely inadequate

Come back with new post once you get results

Members can then advise how and what tests to get done privately

[Jelanthra in reply to SlowDragon]

I'll give that a go. My local clinic says you can now go online and re-order prescriptions (I'm in Wales) but that's a totally new thing that's happened in the last 2 months. They've said nothing about looking at blood results.

I'm actually going for a meds blood test this week too - perhaps if I smile sweetly, the nurse can tell me what was actually tested for, for my last thyroid test! Wouldn't do to ask the question the doctor!

[SlowDragon Ambassador in reply to Jelanthra]

Just ring receptionist and request printed copies of recent blood tests

Allow 2-3 days then pick the results up

[nellie237]

Hi Jelanthra, I just want to underscore how important what these people are saying about getting a print of your blood results is. Long story short: If I hadn't acted on the advice on here to ask for a print out of the initial blood tests I would not have asked to be tested for Iron, Folate, Vit D, and Vit B12 - the GP was not going to suggest it, yet I am deficient in all of these, and they have now all been prescribed. I am a newly diagnosed Coeliac (Hashi's for years).......and still the GP hadn't suggested checking these.

[Jelanthra in reply to nellie237]

I was tested for Coeliac's - and the doctor also tested other things - this is when my kidney and liver functions showed up amiss. So if they can test for other things for a coeliac test, what's so difficult about doing a full thyroid test?

[nellie237 in reply to Jelanthra]

I agree with you, and I've seen quite a few posts here where people are obviously under-medicated for thyroid, but the GP has initially dismissed any concern. I know my blood tests on the NHS have always been TSH & T4, and I've always kept an eye on the T4, but it seems a lot of CCG's only test TSH which is quite astonishing. I believe that they won't test T3 unless you have an overactive thyroid - no point because they won't treat T3.

Like you I've been on PPI's for years - past few years 2 X 30mg per day - I have cut this in half - and am waiting for a Gastro appointment to discuss. I saw a private Gastro in 2009 (bupa with work) and he prescribed the PPI's - unfortunately once a Consultant has prescribed a medication GP's are unwilling to alter/stop any medications prescribed - and getting another appointment with a Consultant...........

Also have high BP. Do you take statins?

I did some research on the initial bloods that I had taken - below are just a few examples g

Liver Function Test

Serum ALT - mine is about 70% through range. I made notes: Usually ALT is in liver -not in blood. High blood level can indicate early liver damage. ? meds I'm on

Ser alk phos liver enz; I'm 90% through range. Notes: *high levels liver disease or bone disorders see Serum Gamma GT - Advice check Vit D

Serum gamma GT; *I'm 30% through range. Notes: Low or normal levels combined with High SAP more likely Bone disorder.

I found labtestsonline.org.uk give an easy to understand explanation re what these tests show.

I've been doing some research re Acid Reflux, and proper testing. As far as I am concerned this is going to be the main topic of discussion with Gastro - because all he's going to to about the Coeliac is confirm that I need to be gluten free. I'll let you know how I get on.

[Jelanthra in reply to nellie237]

Have had borderline high blood pressure for years. I've lost count of the number of doctors I have told, that if they put me on pills, readings go too much the other way and I'm feeling like I'm fainting all over the place. So this GP has said I should take them to protect my kidneys. Which I am and oddly, so far, blood pressure readings have remained constant, borderline high pressure, so perhaps something is actually wrong this time.

I should be on statins as an ECG indicated that I'd had a mild heart attack. News to me. A cardiac nurse said that anomalies can occur if you just breathe wrong at the wrong moment during the test. But she did find a heart murmur. And I do have palpitations - one of initial symptoms of 20 years ago that I still have that levothyroxine was supposed to put right. So I've had a scan and a heart monitor attached for 3 days and am waiting to hear about that. But refused to take statins . I really don't need another med confusing my poor body at the moment!

I think that it must be the ALT reading that my GP is concerned about at the moment. (I really must get those blood tests!) I was quizzed no end whether I was an alcoholic or not! I don't think she believed me when I said I seldom drink (I have acid reflux - how could I?) So she's looking for Non Alcoholic Fatty Liver Disease when she ordered a scan? Another hypothyroidism symptom? But I'm taking pills for that!!!

[nellie237 in reply to Jelanthra]

I know ALT can fluctuate. I found an old print out from 2015 and I was 'over range'. My latest was better - go figure. I don't drink alcohol either - same reason as you. I read somewhere that 1 of the valves is linked to thyroid. Palpitations and a murmur must be frightening - I hope that they get to the route of it all this time. NAFLD? - I haven't seen any posts here on this, but I'll bet somebody has some good info. But I'm taking pills for that!!! The question is - Are you being given enough thyroxene for this? but with things going on with your heart? I'd look at your results - hopefully you'll be able to see T4 as well as TSH and go from there.

[Serendipitious]

Acid reflux has gotten worse. PPis and H2Blockers made it worse, not better (suggesting low acid?) The GP thinks it's stress. She thinks I should be taking anti-depressants.

Your acid reflux could be due to hypothyroidism creating low stomach acid. PPIs can affect thyroid levels making things worse. Unless you have an ulcer you may need to increase stomach acid. Optimal Digestion requires an acidic stomach. Small amounts of apple cider vinegar in water with a protein rich meal helps digestion (by lowering stomach pH) and absorption of minerals.

Unfortunately doctors often think anti depressants are the answer. If you’re not digesting food properly it can lead to nutrient deficiencies which could manifest in low mood. Plus low thyroid predisposes some people to depression. More drugs aren’t always the answer.

[Jelanthra in reply to Serendipitious]

I feel that you are absolutely right.

I told her that I feel as if food is "stuck" so she suggested coeliacs - why not suggest low acid?

Possibly because I'd had an endoscopy that had shown inflammation and the doctor who did it suggested I stop eating fats and take PPis. Hello? I don't eat fat much to keep chlorestorol down? So because the PPis didn't work, GP is referring me back to the hospital. (And did it reluctantly) Heavens knows when that will be and I didn't get much sympathy the last time I went. If you haven't got cancer no one wants to know.

The GP didn't get it. The reason why I'm low with acid reflux is because often when I bend down, including gardening that I love, I feel like my last meal is going to come up, - it's bound to make you low if you feel you can't do stuff. Acid reflux first and then depression - not the other way round. I'm learning to live with it - perhaps that's what they're relying on!

Wow, I'm having a good moan here! Perhaps that's what I needed! Feel better already! Can't do that with a doctor. It gets all pent up and I just break down crying!

[Serendipitious in reply to Jelanthra]

I told her that I feel as if food is "stuck" so she suggested coeliacs - why not suggest low acid?

Because conventional medicine doesn’t have a cure for this in the form of a medication. They use PPIs as a one size fits all.

the doctor who did it suggested I stop eating fats

If you stop eating fats this will affect all manner of things including hormone production and cell membrane integrity. I was also told to stop eating fat by my GP and it made my memory worse. A large part of our brain is made of fat! Thankfully I decided not to listen to her after a month. It did nothing for my cholesterol levels.

when I bend down, including gardening that I love, I feel like my last meal is going to come up

When we don’t digest food properly, a lot of this is due to insufficient gastric pH it sits in our stomach and can result in bacterial fermentation as a low pH is needed to sterilise bacteria in food. Hypothyroidism causes low levels of stomach acid. It’s a self perpetuating cycle. It causes further nutrient deficiencies which then affects thyroid metabolism.

Take steps to improve your digestion, it’s also important for thyroid hormone absorption. If you don’t know where to start read a book by Dr Izabella Wentz on thyroid health.

[Jelanthra in reply to Serendipitious]

To me, sorting out the acid reflux is my number one priority. But I have to wait to see the consultant again. The PPis did actually get rid of the constant sore throat so GP is happy with that

But here's something that I found out for the first time the other day. Hypoglycemia is a symptom of low stomach acid. And I've had hypoglycemia for years, believing even, that I must be heading for pre-diabetic but blood tests always showed I was fine that way. So, here we go again. Another symptom of hypothyroidism that I shouldn't be having because I'm on the correct medication!

[Serendipitious in reply to Jelanthra]

The PPis did actually get rid of the constant sore throat so GP is happy with that

Yes that makes sense, but it’s just treating a symptom. When stomach acid is low or the pH isn’t low enough, it causes the muscle or sphincter to open at the top of the stomach and allow whatever acid there is to travel up the oesophagus and burn your throat. So when you take your PPI it reduces acid production at the source which makes you “feel better” to a degree. However, it affects the breakdown of protein and absorption of minerals. It could result in malnutrition to a varying degree, but yes it’ll make your doctor happy.

Yes hypoglycaemia is common in Hashimoto’s and thyroid patients, that’s why it’s so important to get your digestion as optimal as possible. The balance of absorbed carbs, protein (and fats to a degree) influences blood glucose levels but if you’re not absorbing then you’ll have a tough time managing this.

However, PPIs will not help your digestion unfortunately. This needs to be corrected with the right thyroid medication and then possibly dietary changes to increase acid production. Having stomach acid at the right low pH will stop your acid reflux and indigestion, not lowering stomach acid levels. The pH of your stomach affects everything down the digestion chain including the release of digestive enzymes and bile.

[Madebyme]

I’ve lived with Hypothyroidism for 30 plus years needing changes in my medication very occasionally. I’ve considered myself fortunate that I’ve not encountered other problems along the way. 18 months ago I had a Total Knee Replacement and surgery was constantly delayed because my Thyroid levels were unacceptable to the hospital, having been in the “normal range” for my GP. Finally after nearly a year of waiting and many blood tests, the hospital accepted that I was suitable for the surgery, but it seems since then I have felt unwell, displaying many symptoms associated to the Thyroid problem. My main concern has been the uncomfortable pain in my throat neck and chest, it is pure discomfort and hard to explain the feeling. Then came the indigestion, heartburn and what I can only assume is acid reflux. My doctor has been very good and has prescribed me various PPI’s none of them working very well. I’ve had an ECG because he was concerned I might have Angina. The ECG was normal and I’ve had no need to use the spray I was prescribed. My throat feels as if there is something stuck in it and the glands in my neck feel swollen. I am trying to reduce the Gluten in my diet but it’s early days to say that I have an intolerance. I’m speaking to my Doctor tomorrow so I will be asking for myThyroid to be tested and to test for Coeliacs Disease. I don’t want or expect people (relatives particularly) to feel sorry for me and to dismiss my problem because they don’t understand how important a healthy Thyroid is!

[SlowDragon Ambassador in reply to Madebyme]

Sounds like hospital wouldn’t do operation as TSH was suppressed

Many people on levothyroxine will have suppressed TSH, it doesn’t necessarily mean over medicated

Was dose reduced?

There’s currently an inappropriate obsession to reduce patients dose levothyroxine until TSH is within range. This frequently results in being significantly under medicated

Sounds like you have had dose levothyroxine reduced inappropriately and are now UNDER Medicated

Strongly recommend getting FULL thyroid and vitamin testing done

Ideally via GP, privately if not

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Which brand

What vitamin supplements are you currently taking

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

Or especially if under medicated

Ask GP to test vitamin levels

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 .

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[SlowDragon Ambassador in reply to Madebyme]

As Serendipitious said in reply above

When hypothyroid we frequently have LOW stomach acid

Any PPI is to treat HIGH stomach acid

Low stomach acid a has virtually identical symptoms, but very different treatment

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi and even lower vitamin levels

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

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I agree with everything that has been said about ignorant doctors! Unfortunately, when it comes to thyroid disease, we are often forced to take matters into our own hands.Most hypo patients have Hashimoto´s as it´s by far the most common reason for hypothyroidism, but the treatment is the same once you are hypothyroid. Some doctors I´ve been to think you only need to treat hypoT due to Hashimoto´s or total thyroidectomy whereas other forms of hypoT can magically cure themselves which is why they are obsessed with antibodies. When my antibodies suddenly dropped into range and remained there, my doctor was convinced I was misdiagnosed and never had Hashi´s to begin with...whereas an ultrasound showed completely destruction of the thyroid consistent with Hashimoto´s (I had very high TG and anti-TPO levels at the time of diagnosis 22 years ago). To me, this shows that doctors obsess not only over the TSH, but also over antibodies. Also, antibodies can fluctuate so may be high one time and in-range the next. But many doctors seem not to know that once you have tested positive for thyroid antibodies you have Hashimoto´s and it won´t go away.

The ignorance of many doctors is just frightening. They don´t know that T3 is the important hormone, they have no clue about vitamins and minerals and their importance for optimal T4 to T3 conversion, they dismiss your symptoms as not thyroid-related once on levo with an in-range TSH...I could go on forever.