Medication

[LINDS01]

Hi my gp stopped my medication of levothyroxine about 18months ago. I have recently been diagnosed with angina and I’ve got all the symptoms of hypo but my bloods are normal so my new gp won’t give me thyroxine any ideas

Thankyou

[greygoose]

Do you have copies of your blood test results? If so, post them here, with the ranges, and let's have a look.

[LINDS01 in reply to greygoose]

T-4 around 24 TSH 1.5

I am quite concerned as I have been told that the Levo should never have been stopped , is this right ?

[greygoose in reply to LINDS01]

That is just one blood test, with no range, and you don't even know the exact result? When was that? What were you taking at the time? In order to be able to say whether or not your levo should have been continued, we'd need a lot more detail, I'm afraid.

When were you diagnosed? What were your results at that time? If you were hypo then, you can't become un-hypo, it doesn't work like that. But, do you have Hashi's? Have your antibodies been tested? Sorry, but we need as much info as you can give.

PS Just looked at your last post from two years ago, and you didn't give any details then, and didn't reply to my comments. So we really don't know anything about you, which makes it impossible to give an opinion. Sorry.

[LINDS01 in reply to greygoose]

Sorry for the inconvenience no need for your rudeness

[LINDS01 in reply to LINDS01]

All I wanted to know is should thyroxine be stopped I won’t bother you again

[shaws Administrator in reply to LINDS01]

When you have a blood test for thyroid hormones, do you get the earliest possible appointment, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of 24 hours between the last dose of levo and the test and take afterwards.

If you've been prescribed levothyroxine, it should not be stopped. Some doctors really don't know very much about anything to do with the thyroid gland except look at a TSH result.

You need to get a new blood test and GP probably wont do all of the following:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Vitamin B12, Vit D, iron, ferritin and folate.

GP will probably not do all of the thyroid ones but should do vitamins/minerals.

There are private labs that will do home finger pin-prick tests and I think it would be worth your while as GPs seem to be restricted to TSH and T4 which isn't informative at all.

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

You have to get a print-out (If GP does tests) and it has to show the results and the ranges. We cannot respond/advise if we do not know the numbers of both i.e. results/ranges. Do a fresh post once you have the results etc.

[LINDS01 in reply to shaws]

Well thanks for your lovely reply . Better than the previous one . I am at the end of my tether with it all I have seen my gp today she is referring me to the hospital to see endocrine. I must say I’m really upset with the last reply but at least you answered my question

Thankyou

[shaws Administrator in reply to LINDS01]

Don't worry you are in the right forum - and there's so many variations of questions etc that some things are overlooked.

Follow the instructions for blood tests. This is because the TSH (thyroid stimulating hormone - from the pituitary gland and rises when thyroid gland is struggling) is at its highest early a.m. and drops throughout the day and may mean being diagnosed or not.

Always get a print-out of your results, with the ranges so that you can post if you want an answer. Ranges differ from lab to lab and so it enables members to comment.

I hope you don't wait too long for an appointment with an Endo as you shouldn't have had levo stopped. We've found, on this forum, that doctors and even some endocrinologists are useless as - in these modern times they do not know any clinical symptoms. Before that we were diagnosed upon our clinical symptoms alone and given NDT (natural dessicated thyroid hormones) which was gradually increased until we were symptom-free.

Some of us cannot recover on levothyroxine (T4 alone). T4 is an inactive hormone. It's job is to convert to T3 (liothryonine) and it is T3 which is needed in our millions of T3 receptor cells in order for everything to function and our heart and brain need the most.

NDT is made from animals' thyroid glands so contain all of the hormones we, humans, would normally produce. Unfortunately NDT has been withdrawn due to the Organisation making False Statements about it despite it being in use since 1892 and thereafter people didn't die a horrible death.

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

Also a 'Full Thyroid Function Test' (rarely tested) is:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Antibodies are important as they distinguish hypothyroidism from an Autoimmune Thyroid Disease also called Hashimoto's. Treatment is the same.

GP should also check B12, Vit D, iron, ferritin and folate.

Always get a print-out of your results for your own records and post if you have a query. If GP wont do a Full Thyroid Function Test you can get a home finger pin-prick test so, just in case, I'll give you a link:-

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

[Marz in reply to LINDS01]

If you click onto greygoose you will see how many followers she has and how many posts/replies she has contributed over the years. So not all bad 😊 You had just one reply to your post two years ago and it was such an informative one from greygoose. It is very difficult sometimes for those of us that share our experiences and knowledge gained when there is so little information to go on. Yes the reply could simply have been - No your Levo should not have been stopped. That would have left you with little or no information on the way forward.

Why did your GP stop your levo ? Maybe he was wrongly only looking at the TSH. I am guessing your B12 - Folate - Ferritin - VitD are low - but we mustn't guess must we ? - seeing the results would be a helpful guide.

Angina could be due to LOW T3 - low in range T3 is the cause of many of our symptoms including the heart. Lots of research out there linking heart events to low T3. So if your GP stopped your Levo due to the TSH - then that was very wrong. If the FT3 had been tested and was over range then that is another discussion.

Please read greygoose's replies again with a happy heart - realising that as she is not a doctor she was trying to create some background before making a comment ... Yes or No really is not enough !

Hope you are soon back on Levo and feeling better ... 😊

[greygoose in reply to LINDS01]

I'm sorry, in what way was I rude? I was just saying that we needed more detail to be able to help you. Why is that rude? Rude people don't use smiley faces and say sorry. What was upsetting about that?

[Howard39 in reply to LINDS01]

Hi

I have to step in and say there was no rudeness. GG was right you’ve not given us much to go on.

An average ( my last range) is 12-22 so you’d be over range. However all labs vary and without full facts it’s a stab in the dark other than your result “ appears “ reasonably high.

I’d be interested in your vitamin and t3 levels.

It may be your gp looked at those tests results and thought lowish tsh highish t4 and not prescribed any more. Mine certainly would not have.

My specialist would expect me to looking at other things.

For me I would need to know if I hashimotos. A diet change?

Optimal vitamins b 12 d 3, folate and ferretin and I had magnesium tested.

Is my absorbtion good?

Full thyroid and and adrenal results.

Sorry without more information I can only guess what was in your gps mind and say based on what you’ve told us. yes I’d probably not restart the thyroxine dose.( assuming you left 24 hours before your last dose and fasted on the morning of the test) until I had more test results.

Good luck

[Margjeans in reply to LINDS01]

She wasn’t being rude just asking for details, it is you who is being rude

[Digger031145 in reply to Margjeans]

I didn’t think Greygoose was being rude either.

Just asking relevant questions to get a clear picture.

Greygoose has always been so helpful to me

[LAHs in reply to LINDS01]

I just re-read Greygoose's reply and did not detect any rudeness just an intelligent, knowledgeable person giving you an intelligent, factual reply. She covered all bases for you and I would suggest you follow the advice, it was excellent.

[SlowDragon Administrator]

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

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

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

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

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

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

Just testing TSH and FT4 is completely inadequate

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Low vitamins often lead to low TsH

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Ask GP to test thyroid antibodies and vitamins (they won't test FT3)

Alternatively

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

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

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

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

[silverfox7]

I think a point we all need to remember that many give their time to help others, they don't have to but they want to and sometimes questions and answers can come over as factual which is essence is how they should be. I'm writing this conscious that I've a great deal to do this morning but I just felt I also want to comment that there is often a reason that things could sound more factual than not. I would have asked for more detail as well and it's a positive that GG has taken the time to look at your previous posts to get an update but we don't know what GG was going at the time. She may be expecting an important call, be rushing for a bus, cat just been sick on the carpet-you get my drift So by the same token we should be grateful for any response we get and thank the person concerned. As said above GG is often here to help and encourage but also be aware they are wanting to help you and their time, and may be even yours is precious so often a list is the easier and quickest thing to do in a limited time. It can be more upsetting if no one replies so please don't shoot the messenger.

[LINDS01 in reply to silverfox7]

All I needed was a answer should Levo ever be stopped ????? Sometimes it’s how others word things that come across rude bad bedside manner ,

[Marz in reply to LINDS01]

Yes sometimes Levo should be stopped ...

[greygoose in reply to LINDS01]

I'm not a doctor, Lind, so I'm not required to have a bedside manner. And, a yes or no answer, to my mind, is not a good reply. There must have been a reason why your doctor stopped your levo, I was trying to find out what it was. It could have been because you were over-medicated and he thought that was the best action to take; or as Marz said because he was just looking at the TSH; because you'd had a Hashi's 'hyper' swing; or - incredible as it may seem - because he though you were 'cured' and no-longer needed it. That does happen. Even more unlikely, but still a possibility, could be that you were misdiagnosed in the first place. With information on all those points, it's impossible to give an informed opinion as to what he should - or should not - have done. And, I don't believe in jumping the gun and charging in like a bull with a red flag, or whatever the expression is.

Or, on the other hand, maybe you were referring to the myth that once started, you can never stop levo because you will have shut your thyroid down. But, that is just a myth. On the rare occasions when people are misdiagnosed, they can stop levo with no ill effects. Given time, the thyroid will just go back to doing what it was doing before the levo was started.

But I didn't know about any of this for certain, because we know nothing about you, you don't give any information except that your doctor stopped your levo.

But, if you are upset because I tried to help you, how do you think I feel? I'm upset, too. I'm upset because I took the time, two years ago, to write a long reply to you which you never even acknowledged. I'm upset because I did the same thing again yesterday. I'm upset because when I asked for some information to understand you better, your reply was casual and uninformative as if you didn't really care, or thought I was being nosey. And, I'm upset that when I pointed out that what you'd said was unhelpful, you called me rude. I'm very upset.

And, I'm sorry that all you wanted was a yes or no answer and I'm incapable of giving one - although I cannot imagine of what use that would be to you. And I'm sorry that you think I'm rude, when I was just trying to be helpful. And I'm sorry if I can across as rude when it was not my intention, I was just shocked, frustrated and upset. It will not happen again.

[Astridnova in reply to LINDS01]

Could be that you interpreted a lot of quick technical questions as if they were criticism, but I don't think they were meant to be. Please keep asking and learning.

[silverfox7]

And sometimes there are reasons. I've often written a list as it's the easiest way to do it and it stands out better for the person eager to learn as well. But I often get told by my kids that I write too much! I shall stick my neck out and say that in all probability we are all guilty of something at some time or other but that in turn should make us more tolerant. But I think we all know things aren't that easy and I often think that we are all at fault from time to time-there but for the grace of God springs to mind.

Some posted the other day that being nameless wasn't user friendly but several of us posted reasons why it's a good idea so be 'unknown'. It doesn't mean we are unfriendly and the poster now understands more of the reasoning but often during the day we have more time to post and that may dictate how that reply is fashioned. I don't know if GG even has a cat but things aren't always black and white and as individuals we need to be factual if giving advice so it can't be misinterpreted but time is often an issue as well so we try to cram in as much as we can and that's often misinterpreted as being hard and cold but factual and it's the factual from our own experiences that we really need to put across. It often difficult as well to put an answer that is short and complete in itself. We can often find we mention something else that leads on from that aswill health issuesrgere can be various relevant issues. So no one is likely to give just a single word answer. Then the ball is back in your court as that I would imagine would prompt another question. I'm not a Facebook fan either though I use it a lot but I don't think many of us are good at giving a good précis so easy to upset or get at cross purposes. When/if we aren't feeling well it's also so easy to inadvertently give the wrong impression. So always something to learn from both sides. Gosh just seen the time, need to get dressed and eat and out of the house in 15 mins! So enjoy your day everyone and be kind.

[Ossuryak]

Well this ? Set the cat among the pigeons, maybe Lindso1 is not feeling well as us thyroid people do have days where we find it hard to cope with feeling unwell. Beetroot juice has nitric oxide in it and helps to open up blood vessels . Yes you need more extensive thyroid tests and a copy of tests , also I would see a cardiologist . Greygoose seems to give quite good advice with lots of test results to go on , you may like to give it another try ,i think it would be worth it. Good luck.

[Lulu2red]

What type of Angina have you been diagnosed with? There are different types; stable, unstable or variant. The underlying cause needs to be treated before you can reintroduce thyroid replacement again so this should be your first concern. Maybe your GP withdrew it as a precaution because too much thyroid hormone can give you Angina symptoms. Being within normal range we all know means nothing, you can still be very hypothyroid. To answer your question literally; yes thyroxin can be stopped. My Aunt was hypothyroid most of her life, then had a thyroid storm, thyroid removed partially. Then lived many years Euthyroid after without taking any medication. Your new GP will only give you thyroid hormone when it's safe to do so. You could post your latest blood test on here with ranges and ask for comment.