Given up all hope of help now.: Just returned... - Thyroid UK

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Given up all hope of help now.

DeeFish71 profile image
64 Replies

Just returned from doctors - after having to come off Sertraline, because of the enlarged pupil which I send a previous post about.

The doctor we had faith in to help us has now given up on me. How suicidal do you think that has made me feel?

She said that there were notes on the system I had been up to this out of hours place but it was "private" and she could not read what that doctor who told me to come off the tablets had said. We had most certainly NOT asked for it to be private - they are NHS and I have had scans up there which the GPs get the notes back from.

My sore throat still persists. Every single day, and not just in stressful situations. Same with the tight chest, despite taking my brown inhaler every day.

I asked about Endochronology, as they were my final hope that they would see me and do more tests - THEY DO NOT WANT TO SEE ME, AS THINK MY THYROID LEVELS ARE OK. I was crestfallen.

She will refer me up ENT again but they may not want to see me. So they saw me ONCE in May and that's it?

I just feel they blame it all on stupid anxiety - I have been ill for 8 months next Thursday, who wouldn't be anxious and worried?

Had ECG done Monday for my ectopic heartbeat, and that was deemed "normal" but havign a 24 hour one done in a couple of weeks. That could be a cause for the constricted throat, but not the sore throat. Not what I have read up on it - I saw on the screen it was "sinus arythmia".

I feel utterly hopeless and that even Xmas is not worth bothering with now, as I will be dead or in hospital with another infection as my immune system is so bad. Yet they don't care. Well it will save them money won;t it, so that's all they want.

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Buddy195 profile image
Buddy195Administrator

Hi DeeFish71. I’m really sorry that you continue to feel so ill. Just checking from your last post, have you had your vitamins checked? I use Medichecks for thyroid tests, plus ferritin, folate, D3, B12. Just taking a multivitamin (which you referred to in your last post) is probably not enough. If you post your vitamin results on the forum, you will receive lots of advice. For me , and lots of others, symptoms & anxiety levels don’t improve until both thyroid medication and vitamins are optimal. I have TED, so know how hard it is to struggle with visual issues. I’ve also had an ECG and ended up in A and E with palpitations- this is also very scary. Please do not despair, others have had similar symptoms to yourself and have managed to improve their health.

DeeFish71 profile image
DeeFish71 in reply toBuddy195

Thank you for your lovely reply. They didn't even suggest hormone and vitamin tests. And I feel too scared to even suggest it - they have written me off as a hypocondriac.

Nanaedake profile image
Nanaedake

Don't give up. I was ill for 7 years and I'm fine now. I've had to make all sorts of adjustments, take supplements and get exercising and no one could wave a magic wand. No doctors knew what to do except hand out more drugs which gather side effects.

You can get better even if you don't get back to perfect you can have quality of life again.

I found a good qualified hypnotherapist helped to give me the confidence I could solve my own problems and with help from this forum, advice on vitamins etc I slowly recovered. So don't give up hope. Try something non invasive like a relaxation tape, get some good support whether it's hypnotherapy, counselling, friends and family and start making little changes. Get lots of rest and the benefits will begin to grow. Keep reminding yourself it's possible, you can do it like you've overcome other challenges in your life previously.

Slowdragon has already given you the best advice which you need to follow and get your vitamin levels tested, get a copy of results and post them here for advice.

DeeFish71 profile image
DeeFish71 in reply toNanaedake

Thank you - I rarely have time to relax, but when I do, the sore throat and tight chest still happens. I have a good circle of friends online and my lovely husband and parents who try to help but it's not a mind thing - it's a physical cause, and they cannot connect that it all stemmed from the virus I had.

Nanaedake profile image
Nanaedake in reply toDeeFish71

Well, to sort it out you have to muster the attitude that it's possible to do something g about your physical symptoms rather than feeling helpless so that is a mind thing. I don't mean it's a mental health condition, I'm talking about mind set and attitude of mind.

Your sumptoms are not necessarily a result of a virus because you haven't excluded all possible causes yet. You need to get biochemical evidence and act on that otherwise it's speculation. If you get fixated on one possible but unverified cause you might fail to find the real cause or causes.

DeeFish71 profile image
DeeFish71 in reply toNanaedake

I still think its Hashimotos but this is why, if the doctor is clueless, she should have sent me to see them. Then it could been treated.

Nanaedake profile image
Nanaedake in reply toDeeFish71

Well, you've now got the knowledge from advice on this forum in how to get this sorted with or without the doctors help.

There is no one the GP can send you to in the NHS who will give you the good advice you've had here. Now it's up to you. Are you going to follow the advice or just stay ill? It's your choice. What is your goal?

You can carry on battling with the NHS or do what you need to do. Testing through an online lab is a known and limited expense and you could budget for it. Or ask your friends and relatives to help you out. You can repay them in kind with all the knowledge you're going to gain from this forum once you're well again.

HowNowWhatNow profile image
HowNowWhatNow

Have you tried thinking about your situation from a slightly different angle?

Imagine this is a friend of yours, a good and kind person, who your medical problems are happening to.

What would you suggest they do?

Would you tell them to give up now and forget about Christmas, too?

I am remarkably bad on self-care / giving myself an easy time. But from time to time, when I am really beating myself up or things feel very bleak, I try this.

HowNowWhatNow profile image
HowNowWhatNow in reply toHowNowWhatNow

And by the way, I am not trying to say that all any of the problems you are having are not real or inside your head. I hope that much is clear!!

DeeFish71 profile image
DeeFish71 in reply toHowNowWhatNow

I appreciate what you are saying, and I do try to look after myself and keep going, I exercise as regular as I can but it causes me so much pain. Even resting and sleeping still cause me physical pain.

HowNowWhatNow profile image
HowNowWhatNow in reply toDeeFish71

You are doing so much. One of the things you are doing will eventually work for you. I have confidence that it will.

It sounds as if you have all but given up hope. There are a lot of people here willing you to get better!

Do you have the finances / savings available to get the blood tests recommended above?

DeeFish71 profile image
DeeFish71 in reply toHowNowWhatNow

Thanks Georgeor. I have been fighting for 8 months now - ever since the cold that kicked it all off turned into a chest infection. All tests, scans, ENT etc all come back "normal". All medications I have tried failed. But today was the last straw up the doctors for me. My throat has been tight all day and been struggling to breathe, despite using my inhaler (which proves its not asthma).

HowNowWhatNow profile image
HowNowWhatNow in reply toDeeFish71

Which type of inhaler are you using? Salbutamol?

Sometimes an inhaler not working might prove you need a stronger / steroid inhaler too, or another tougher med to go alongside it. What I mean is, how sure are you that your problems are not respiratory?

There is a really good support group here for Asthma. Do you already belong it? The support there is (almost) second to none.

A virus / chest infection being a trigger for a whole cascade of asthma problems is a v common scenario .. and might, unless you can rule something else in, this not still be you?

DeeFish71 profile image
DeeFish71 in reply toHowNowWhatNow

Clenil Modulite (the brown one) and very occasionally the blue one - Salbutomol. Neither really help even though I do take the brown one each morning. My throat is very dry despite drinking plenty. I still am convinced the awful antibiotics I have in March, especially that Doxycyclin, did something bad to me.

HowNowWhatNow profile image
HowNowWhatNow in reply toDeeFish71

What kind of chest infection did you have it - was it pneumonia?

Please join the Asthma group and ask them about your sore throat, if you already haven’t.

Consider taking probiotics, given your concerns re: antibiotics.

DeeFish71 profile image
DeeFish71 in reply toHowNowWhatNow

No idea - just a general one, don;t think it was pneumonia (but I did question it before and got treated like once again, a hypocondriac). I will join the asthma group though xx

Wwerty profile image
Wwerty in reply toDeeFish71

Funny you mention that antibiotic, I was on it in June for a bad ear infection which it worked well for, but 3 days after stopping it all my problems started and I was told I had a under active thyroid and put on levo and since then my life has been terrible, reacting to tablets feeling ill, episodes of sore throat and feeling tightness in my throat, palpitations daily the list is endless, I’ve currently been told to stop all meds and see if my tsh stays stable but I’m going through hell since, I don’t have any advice but wish you well because this is hell x

DeeFish71 profile image
DeeFish71 in reply toWwerty

Exactly what I have had - so I am not alone. I am so sorry you are suffering. i did tell doctor I wondered if it was those pills caused a reaction and they said no. Well I think they are wrong.

Wwerty profile image
Wwerty in reply toDeeFish71

I’m kind of hoping it was the antibiotics and once I get through this withdrawal of levo I’m hoping I’ll be ok and can stay off levo, dr said that I had antibodies when told I had under active thyroid but that could be caused by an infection or virus........ really?? So if said dr read my notes and saw that I had had in infection 2 weeks before diagnosed they might have taken a wait and see approach and I wouldn’t have had to suffer the last four months of hell, palpitations every feeling drunk on the Levothyroxin, to weak to do anything, to scared to leave the house, horrible depression!

I hope you start to feel better soon because this is truly horrible, if you want to private message for a chat I don’t mind, I don’t know much about all this thyroid business but I do know talking with someone with same thing helps me sometimes x

DeeFish71 profile image
DeeFish71 in reply toWwerty

thank you for being so understanding. If you wanted to PM me anytime, please do. I so hope you feel better soon. I wish Doctors would read up on contraindictions of medicines. Chemists are normally more knowledgeable than doctors I have found. I just feel so sad that the one doctor I thought I could rely on has totally changed her tune and now I have nobody up there who I trust.

HowNowWhatNow profile image
HowNowWhatNow

One last thing - which is the symptom or aspect which is most troubling you?

As others have said, to make any advances / decisions you need a wide range of things in your blood tested for.

I had very low folate levels diagnosed recently. I am taking vits for it and bit by bit slowly mending.

I wish the same for you.

DeeFish71 profile image
DeeFish71 in reply toHowNowWhatNow

I just wish they suggested more at the appointments - I pinned my hope on Endochronology to at least do further tests like the T3 etc but they would rather write me off as just anxious to save them money. The worst thing is the breathlessness and the sore throat/tight chest. I have got over the crippling anxiety I had 3-4 weeks ago but still get occasional flashes of it. Which is just me, always been like that, but it wears off. All the appointments cause me more stress as each time I get no answers and feel the whole lot is futile. Even offering me to see another Gp there - I have seen them ALL, and then you have to relay 8 months worth of problems to them as they never read the notes. I suppose see how this 24 hour ECG thing pans out. I really fear for next year, and in the meantime getting more illnesses/cold/viruses, feel it would finish me off as I feel too scared to go up doctors and A&E are not much help.

HowNowWhatNow profile image
HowNowWhatNow in reply toDeeFish71

I hear ya. I know what it’s like. I’m sorry.

HowNowWhatNow profile image
HowNowWhatNow in reply toDeeFish71

I looked up doxycycline for you (can’t remember spelling) and there are quite a few reporting chest pains / throat pains / racing heart.

I think this is an American site:

steadyhealth.com/topics/che...

One person here says they were treated for esophagitis after taking it.

As you has such a bad experience, linked in time to it, you should go online and report the drug to the Yellow Book. I have done this before after my son had a reaction to an injection (am pro-vaccination, this was just a bad one). If enough people are going through similar problems...

DeeFish71 profile image
DeeFish71 in reply toHowNowWhatNow

I know there are certain things you need to be careful of on those pills - like taking it with a full glass of water and not laying down 30 mins after taking it. I adhered to all of that!

SlowDragon profile image
SlowDragonAdministrator

There are over 102,000 members on here. Vast majority are UK based and nearly all of us had to get FULL Thyroid and vitamin testing PRIVATELY in order to make progress

NHS treatment of hypothyroidism is woefully inadequate

Just testing TSH and FT4 is completely useless

Anxiety and depression are very very common hypothyroid symptoms

Poor conversion of FT4 to FT3 is very common, especially if you have autoimmune thyroid disease (Hashimoto's)

Conversion of FT4 to FT3 often gets worse the longer we are on Levothyroxine

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

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, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Strongly recommended you get private testing and come back with new post once you get results

Improving vitamins by supplementing can significantly reduce symptoms

Also essential to know if the cause of hypothyroidism is due to autoimmune thyroid disease diagnosed by high thyroid antibodies

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Food intolerances are very common too, especially gluten. Gluten intolerance can also contribute to anxiety

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

DeeFish71 profile image
DeeFish71 in reply toSlowDragon

I simply cannot afford to go private. I wish I could. The NHS need to wake up and treat us right. They would actually save money on other meds and tests if they did.

Nanaedake profile image
Nanaedake in reply toDeeFish71

Your health is worth £60 and it would be a good Christmas present to ask for. You really do need to take Slowdragons advice and get vitamins tested and stop hoping the NHS will do them.

For example, the chest pain you have might be due to reduced stomach acid which is common with hypothyroidism. If that's the case then vitamin levels will likely be low as well so testing them might reveal the source of some of your discomfort.

Reflux from low acid might cause wheezing too. So, you see you really need to get these vitamin levels tested so you can begin to unravel your problems.

Make sure you post results here even if GP says all normal because normal is not the same thing as optimal.

DeeFish71 profile image
DeeFish71 in reply toNanaedake

But it would mean repeated visits, then the costs pile up. Which of course would cause more stress. I was on Omeprazole for 6 weeks earlier in the year when they said it maybe reflux, but ENT ruled it out.

Nanaedake profile image
Nanaedake in reply toDeeFish71

What do you mean, repeated visits? There is no 'visit'. You simply order a testing kit from Medichecks, then send off your blood and they send you results. Then you post your results on this forum and administrators will tell you what you need to do to optimise your vitamin levels or get tests done via your GP based on the biochemical evidence.

Research Medichecks tests by viewing their website and get a friend to help if you can't understand it.

Oh, and omeprozole lowers stomach acid which likely makes the problem worse. You can get reflux with low stomach acid because the valve between the stomach and esophagus doesn't close properly because it needs the acid to activate it properly apparently.

You need to read all the links Slowdragon has given you. Don't expect the NHS or your GP to know the first thing about hypothyroidism. Read and learn yourself.

DeeFish71 profile image
DeeFish71 in reply toNanaedake

I would need to send blood?? How can I do that, I don't own syringes here and would not have a clue how to do it.

Nanaedake profile image
Nanaedake in reply toDeeFish71

Read the website, it tells you how to get the test done. There is the option of fingerprick tests too. Fingerprick tests are easy enough. You're sent all the kit and all the information.

fibrolinda profile image
fibrolinda in reply toDeeFish71

I am one of the many who had to get blood tests via thyroid UK link slowdragon gave you. I have used both Blue horizon and medichecks, Medichecks tends to be cheaper. The recommended tests cost from £59 to £79 and we'll worth saving up for. Do not give up, (been there many times )get bloody mad, you should be😤 I have to go but will be back with links and more info asap. The blood test kit is Sent to you and includes all you need to get a sample and clear instructions. Finger prick is easiest and cheapest option. You get lancets that you hold against your finger near the nail and press the little plunger then fill the tiny little vial by dropping the blood into it. I am needle phopic and this is easy for me. Your lovely hubby can help if you are at all squeamish... Like me 😆 . You send sample back in envelope supplied and within 2 days you get the results. Put a post on here with those results and find out what the heck is going on, and what to do about it. Read up on symptoms of hypothyroidism at Thyroid uk. Argh can't do links on this stupid tablet and really got to go. ((hugs)) and chin up xxxxxxx

DeeFish71 profile image
DeeFish71 in reply tofibrolinda

thank you- but it's the aftermath that concerns me - what if the vial gets crushed in the post? What if I go back to GP with results and they wont' refer me to Endo? As they assume cos I had this done private, I can afford to go private for GPs and specialists? And if they DID put me on a waiting list, how many months wait, and the tests would be out of date then. Sorry to bombard you. But thank you as well xx

fibrolinda profile image
fibrolinda in reply toDeeFish71

If the vial in its protected container gets crushed they will send you another one free. One step at a time. First get tested and results on here then the wise ones will talk you through it and the next steps to take. You are getting private tests you cannot afford because your GP won't do them, if they won't except them then they must do their own tests. And if referred they will do tests before or at appointment. Meanwhile you can act yourself on the advice given... Your vitamin and minerals are probably dire and you will be advised on supplements etc. But please, Read up on thyroid UK site

thyroiduk.org/tuk/about_the...

And medichecks medichecks.com/thyroid-func...

This is the best test to see whats going on.

Please, one step at a time.. Easy to say I know but you have been ill for a long time and it will take time to sort it.

Hugs

Linda

DeeFish71 profile image
DeeFish71 in reply tofibrolinda

Thanks - and hugs back xx

TSH110 profile image
TSH110 in reply toDeeFish71

I got a Thriva blood test but found the spigots did not work for me and I could not get the blood out they charge £60 to send a nurse round to do it! Go for one of the others as o think medichecks only charge £20 for a blood draw. You will most likely have no problem doing it but bear that in mind. Don’t worry about the outcomes, getting the facts about you vitamin levels etc are good and helpful things to know so you can decide what to do about them plus it is harder for medical people to keep fobbing you off and not taking responsibility for what ought to be their job in supporting you towards better health. I personally have given up on the NHS. I take NDT and feel miles better than when those NHS nutters were treating me. I refused to give up hope until I had explored every option I could - I am so darn glad I did with help from lots of people here. ☘️🍀☘️

Nanaedake profile image
Nanaedake in reply toDeeFish71

You are unlikely to need a referral to an Endo if you follow the advice you've had here. In my experience Endos are useless with thyroid, most of them are diabetes specialists and know diddly squat about Thyroid.

If a problem shows up on your blood tests from Medichecks the GP will be obliged to conduct NHS blood tests to confirm.

Most likely your results will be dire but at the bottom end of NHS range so GP won't do anything in that case because they don't treat general nutritional levels on the NHS - You have to have scurvy or rickets or worse. But if your results are very low or below range GP will do own tests and offer supplements if NHS is required to do so. But the experienced administrators on here will advise you based on your test results of what you need to supplement to improve levels if it is not within NHS remit to treat. You can then retest later on to check how supplements are working if you want.

So you won't need to be on any waiting list. Many of your symptoms are indicative of low vitamin levels and it's extremely common in people with thyroid conditions.

Don't rely on the NHS to sort this out but take your own initiative as most of us on this forum have had to do. You've got all the advice you need here.

SlowDragon profile image
SlowDragonAdministrator in reply toDeeFish71

Most people manage very well with the DIY finger prick test

Alternatively you can pay extra £25 for private blood draw

Obviously that does make it more expensive

Suggest you start with just ordering vitamin D postal kit (it's an NHS. Kit)

vitamindtest.org.uk

It's a very easy finger prick test. Just 4 drops of blood on a card....pop in post and results are emailed to you

Getting vitamins optimal is first step and is easily done by self supplementing

If results show medically recognised deficiencies then GP is obligated to prescribe

You might find reading profiles of regular contributors helpful

I certainly would not have made any progress until I joined the forum, learnt the importance of Full testing...after 26 years totally inadequate NHS treatment

Buddy195 profile image
Buddy195Administrator

If you purchase a thyroid vitamin check from Medichecks on a Thursday they are usually discounted. I appreciate that £60 for private testing is a lot of money, but if you post your results on the forum others can offer much better advice and suggestions. Very few GPS (or Endocrinologists) will do all the necessary tests.

Low T3 causes ectopic beats - I have basically the same as you - runs of 3,4, and 5 in a row, but I have been much better since being on T3 (but you won't get it on the NHS). If you are really worried, try for a referral to cardiology for a 24 hour holter monitor and an echo test - chest pains (like being pressed against a fence) and feeling of nausea are good for getting a referral

DeeFish71 profile image
DeeFish71 in reply toAngel_of_the_North

I am having a 24 hour ECG done in a week or so, so will see what happens then.

thyr01d profile image
thyr01d in reply toAngel_of_the_North

Don't forget that some of us do get T3 on the NHS.

Angel_of_the_North profile image
Angel_of_the_North in reply tothyr01d

But very few, and it is very hard to get it if you were not getting it before the "ban". So safer to lower expectations

thyr01d profile image
thyr01d in reply toAngel_of_the_North

Yes, I absolutely agree with you about not raising false hopes, but I think also we mustn't stop people from trying because we know that some will succeed.

Nanaedake profile image
Nanaedake

Don't waste time waiting for results of ECG, get the tests done that Slowdragon has advised in the meantime. ECG will likely be normal but no harm in checking it out. Your GP is trying to help.

Wetsuiter profile image
Wetsuiter

You ve had a lot to put up with, and you ve taken half a step in the right direction with your posts on here.

When you re ill you just want someone to make it alright, and obviously in the UK, we definitely feel we have that right.

A really big step for me has been deciding to take control of my health myself. not an easy fix cos its 3 steps forward, 4 back, then another 1 forward. But one thing that helped me was clearly writing down how i was AFFECTED by symptoms rather than the symptoms themselves. an eye opener to me was that not only was my quality of life affected, but that part of that involved my ability to work and therefore financial stability.

i struggle financially, and this means paying for vitamins and tests, is phased in, when i can. and this is not easy and especially hard to accept emotionally. But i have come to the conclusion that by accepting that Dr s might not know it all, and that the only person who will care enough to keep on trying is me, i may be making progress. (with support and knowledge on here, of course).

its bloody hard. but for me, the realisation that by not paying for what s needed, might actually make me poorer in the long run cos i cant work.

this has become a ramble, but what I'm trying to say is:

Step 1. Make the decision to become an advocate for your own health. you are so nearly there. Dont think about step 2 yet.

Just think 'F*ck This For A Game Of Soldiers. it's hard right now, and this Christmas may not be my best one yet, but I'm gonna find a way to feel better!'

In summary: Step 1- 'F*ck this!'

DeeFish71 profile image
DeeFish71 in reply toWetsuiter

Thank you - I have told doctors how symptoms make me feel but it seems to fall on deaf ears. I wonder if trying Zinc or Vitamin D would help me (been reading up on them)? But I am scared if I am not doing the right thing there either. We would need to save for tests, and it will not be easy with Xmas on the horizon. I do not have a job but I am very busy as a housewife and I insist on doing 90% of jobs here as my lovely husband works hard in his job and its my contribution to the house. He does help me do a lot of chores at weekends, so I don[t want to overburden him and Iwould rather keep busy and get stuff done.

SlowDragon profile image
SlowDragonAdministrator in reply toDeeFish71

Why not ask your lovely husband to come with you as support to see the GP

Taking supportive friend or family member along to see GP can be very helpful. They don't need to say anything, unless they want to

Request that GP tests folate, B12, ferritin and vitamin D on NHS as per NHS guidelines

Low vitamin levels are common when hypothyroid

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

DeeFish71 profile image
DeeFish71 in reply toSlowDragon

He has been coming with me to all the GP and specialist appointments the last few months, he cannot come to all of them as he is needed at work, but his place have been very supportive of him working at home when he needs to.

Nanaedake profile image
Nanaedake in reply toDeeFish71

You could take 500mcg of vitamin C daily which might help levothyroxine absorption and improve stomach acid. I took 1000mcg of vitamin C daily in two divided doses for about a year and now have reduced to 400mcg of food quality vitamin C. Vitamin C is water soluble so your body will excrete what you do not use.

Ensure that vitamin D is taken at least 2 hours apart from levothyroxine as it can hinder absorption. Vitamin C can be taken at any time as it does not hinder absorption.

thyr01d profile image
thyr01d in reply toNanaedake

HI Nanaedake, do you mean vitamin C improves stomach acid through it's direct effect, or, that if it helps levothyroxine absorption the improved thyroid function leads to better stomach acid production/balance?

Nanaedake profile image
Nanaedake in reply toDeeFish71

If you want to try vitamin D then you need to be tested first to find out if you need it and how much.

If you don't go out in the sun much and you don't have holidays abroad in sunny countries in the summer and you have symptoms of aches and pains, joint or muscle pain and depression then tell your GP and say you'd like vitamin D testing to rule it out as a cause of your symptoms.

Explain that you want to get better and ask the GP if he/she can help you rule out some of the obvious things like vitamin D deficiency and see what happens.

The NHS website advises us all to supplement 400iu (10mcg) of vitamin daily in the winter as most of us don't get enough. However this amount is unlikely to be enough if you are deficient as a result of thyroid disease.

You can, however safely supplement that amount in the first instance without testing since the NHS gives that advice.

Read the info here

nhs.uk/conditions/vitamins-...

Wetsuiter profile image
Wetsuiter

dont just try random ideas, that may be a waste of valuable resources, both physical and emotional.

one step at a time

Wetsuiter profile image
Wetsuiter

Try to be patient with yourself. try to get help from friends and relatives if you have them. rest.

if you have the energy when resting, try to gather any actual facts you have, already to hand.

sorry i cant remember whether you had any test results with ranges. or if you have online access to results.

give yourself some time.

Wetsuiter profile image
Wetsuiter

i should add that they reason i ve been able to write all this is cos i am feeling sort of ok atm. that feeling may not last, and sometimes things do get on top of me. so i do understand.

going to bed now

DeeFish71 profile image
DeeFish71 in reply toWetsuiter

Thank you for all your advice. Have a good night and hope you feel just as well tomorrow. Take care xx

humanbean profile image
humanbean

About private testing...

I could almost hear the panic in your posts when you said what you thought about the idea of getting private testing. It reminded me of how I felt about it (several years ago) before I learned how it all worked. I had this vision of having to pay for the following :

Pay NHS GP for referral to a private GP

Pay private GP to order tests

Pay testing company for the tests

Pay for getting blood taken

Pay private GP for interpretation of blood test results

Pay private GP for prescription(s) for any treatment I needed

Pay private prices for any drugs required following testing

Pay private GP for further appointments

Pay private GP for re-test

and so on and so on and so on.

I really had this vision of paying possibly £1000 or more just to get my iron checked!

Thankfully, I discovered that private testing of the type people talk about on this website isn't anything like that. If it was I would never have got tested for anything.

The way it really works...

Let's suppose that you want your thyroid hormones, antibodies and basic nutrients checked, which is one of the most comprehensive test packages that people do. You could do a subset of these if money was tight e.g. just the thyroid hormones.

You don't need to see a doctor of any kind to do this.

Your first port of call should be this link :

thyroiduk.org.uk/tuk/testin...

It gives links to companies that members have found reputable for all sorts of different kinds of tests.

Medichecks

Most popular comprehensive test :

medichecks.com/thyroid-func...

Blue Horizon

Most popular comprehensive test :

bluehorizonbloodtests.co.uk...

Thriva

Most popular comprehensive test :

try.thriva.co/thyroid/

---

Once you've decided on which company you want to use you will have to do the following :

1) Register with the company you want to order from.

2) Buy the test that interests you from the website of the company you've chosen. Most people choose finger-prick testing because it is easier and cheaper.

3) Whoever you order from will send you a testing kit through the post. The testing kit consists of finger-prickers to get blood out. Tiny little tubes to drip the blood into. Swabs to clean your fingers. A sticking plaster. Labels for you to fill in with your details to stick on the test tubes. Strong protective packaging for your samples. The paperwork which gives details about the tests you've ordered and who you are. Envelope to send everything back to the lab.

You may have to pay the cost of postage. Many of us use special delivery for arrival by 1pm the next day. It is important to create and post your samples on the correct days. You want your samples to arrive when the lab will be open, staff will be there to accept it, and your sample to get to the lab as fast as possible. So samples should be posted to arrive no later than Wednesday at 1pm. You don't want your envelope to sit in a post box or a sorting office for days before delivery, and you don't want it sitting waiting to be processed at the lab all weekend. So posting on Monday or Tuesday is usually best having created your samples on Monday morning or Tuesday morning.

Once your blood has been processed you will be sent an email with the results or a link to tell you where to find them. Once you have them you can copy them into a new post on this forum and ask for feedback.

It is much harder to explain this than to actually do it!

If you ever need to get a full blood sample from the arm rather than just a few drops this can be done with an extra cost at the time of ordering. Most companies have a phlebotomy service you can use. But ask about this if the situation ever arises.

Tuscansun profile image
Tuscansun

Hi DeeFish71, sorry to hear that you are struggling... My best guess is your GP just doesn't know how to help you.

With many new chronic conditions due to environmental toxicity, healthcare just cannot detect it and cannot diagnose it.

As you had antibiotics, you need start taking probiotics and prebiotics as well as anti-fungal. Fungal overgrowth is extremely common after the course of antibiotics and can give you sore throat and all kind of inflammations as well as fully disrupt your digestions. I had a course of antibiotics in June and am still battling fungal overgrowth.

Look at your diet and try to do detox - drink smoothies and eat raw fruits and veges (ideally organic). Avoid over processed food.

Regarding Heart palpitation - my daughter had it and turned out it was potassium deficiency (Hypokalemia). healthline.com/nutrition/po...

DeeFish71 profile image
DeeFish71 in reply toTuscansun

Thank you for your reply. I feel worse than ever, just when life is getting more busy for me. Chest tight, wheezy on occasions, cant take a deep breath, stinging nose, and that wretched sore throat. The GP just seems to have 2 options "smoking" or "anxiety". Yes I do smoke but have cut down. I rarely drink alcohol. I have had this 8 months today. I feel I will never get over it. I take on board what others on here say, but the option of getting all the tests done privately at the moment is difficult with Xmas on it's way and needing the money for that. I have an ECG 24 hour one next Weds but can;t see what that is going to prove.

Tuscansun profile image
Tuscansun

It seems to me that you also very stressed - additionally to everything else.

Wanted to ask you...Do you have the same symptoms when you indoors and outdoors? Or do you feeling better outdoors? How fresh is your indoor air?

If you smoke (or smoked) inside your home, you seriously need to stop it immediately and do the clean up.

Highly likely, that via smoking (alongside other factors) contributed to high level of accumulated toxicity in your body - and your body just signalling you that you need to change your lifestyle. Your cut down smoking wouldn't have any effect at all if your body toxicity over the threshold.

Check what you eat - while industry led us all to believe that food is "neutral" - however, anything we take into mouth or put on skin, or inhale, affect our bodies.

If I were you, I would allocate half a day and go to gym or spa with sauna and Jacuzzi- water is great for helping you to relax and detox. Drink clean water - hot or cold. Water with lemon etc.

Search on Youtube or online for Dr Hyman or/and other functional medicine doctors videos.

I personally not sure that you should take tests now. If they come back "normal" then what?

Make some changes and watch how your body will react...

For throat you can try what I do to prevent or treat cold/flu at the very early stage: couple of sips (less than tea spoon) of any strong alcohol (cognac, gin, whisky, vodka) - and keep it in your mouth for minute or two.

DeeFish71 profile image
DeeFish71 in reply toTuscansun

I know smoking isn't great for me, but I cannot just stop so easily. I still think it's a problem with thyroid and something happened after the virus I had - it's been 8 months today it started just from a cold. It makes no difference if indoors or outdoors but I don;t go out much as so many people cough and sneeze everywhere. i seem to pick up illnesses so easily. It's a very busy time for me now and no time to relax much or go to a spa/gym. I haven't the money to do so with Xmas on the way. I just wish Doctors would stop fobbing me off with 'Anxiety'. When I struggle to breath (this has got worse this week incidentally), I do worry - anyone would. I can't see what this ECG thing will do. Then its more waiting for results and they will be passed as normal (I have a sinus arytthmia which they only noticed up A&E in May).

Tuscansun profile image
Tuscansun

Hi Dee, just wanted to share something - maybe you can consider taking it on board.

I have a friend who is consistently has sore throat - practically, most of the time. it could be better or worse but mostly it's there.

Anyways, we decided to start Vit C injections to support ourselves in flu season - and after 2 injections she told me her throat was fine.

While one thing doesn't work for all as there are different causes and the same symptoms, probably you can try Vit C IV? One big dose should make a difference I believe.

DeeFish71 profile image
DeeFish71 in reply toTuscansun

Thank you - I am prepared to try anything. Tried salt water gargling, trying new Vitamins, Lockets, Strepsils, Difflam - nothing works. I am wondering if it's post nasal drip as well. My throat looks ulcerated and Doctors never see it. They never look properly - a 10 second glance with a torch is pointless. Also had deep ear pain since Weds when woke up and feel like swallowing a needle, all on left side. Read up on it and another terrifying thing it could be which could be related to MS. How much more?

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