No Thyroid and forgot how to feel happy... - Thyroid UK

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No Thyroid and forgot how to feel happy...

Nothyroid63 profile image
31 Replies

Hi,

Hello everyone, this is my first post and it has taking me ages to build up the courage to right.

I was diagnosed back in April 2006 with Graves. In April 2011 I had the Radioactive iodine tablet. That worked for approx 6 months - went overactive again. They would not give me another dose as by now I had the Thyroid eye disease.

So, I had the Thyroid removed Aug. 2013. At first they gave 125 of Thyroxine, after two months they said I was being overdosed and put down to 100, after another two months I was put on 75 as they said I was still being overdosed, so I have been on 75 since November 2013.

My levels have been up and down. I was not told to take the tablets 1 hour before food, and I was not advised to keep vitamins and other meds 4 hours from the Thyroxine. It was only reading through this site that I got that advice - thank you. So since last March I have followed the rules, but still the levels are up and down. I also have Ulcerative Colitis, and I have Vit B12 injections every 3 months. I have also developed Tinnitus since being on Thyroxine.

I am very confused, and I have forgotten how to be normal and happy since taking this Thyroxine. My TSH levels have been around: 1.03, 2.07, 3.58 (thats when I found out about taking Thyroxin 1 hour before food), 2.48 July then suddenly 0.54. The GP put me down to 50 at that point, but 2 months after TSH levels went up to 19.1. I was then put back on 75 and Dec 2014 went back to 1.0. Now I am back to 2.41 Jan 2015. The GP only does TSH blood tests as he says they don't any other tests since I have no Thyroid.

I have a fast heart beat in the mornings, and always feel shaky, and yes I do get headaches.

I take a multivitamin which contains iodine and iron - should I be taking this? It's only an off the shelf type multivitamin. I also take an Omega 3 fishoils, Vit.C, Vit D and Vit B complex. This is too many?

I'm sorry for moaning, but I have forgotten how to be me, no confidence, always on the verge of tears, whoozy head and quite frightened about this problem. I am particularly worried about this heart beat thing.

I am 63, retired last year and I, just like everyone else, just want to be able to enjoy how ever many years I have left. Oh I put on my outside face of 'yeah I'm Ok thank you', but I'm not inside . I don't laugh much any more, nor do I get excited about things.

Thank you for reading, and I am sorry for moaning.

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31 Replies
Fruitandnutcase profile image
Fruitandnutcase

Well done for plucking up courage to post. You will get lots of support and good advice on here. I don't think I would have survived without it. You really are having a horrible time. I have Graves and am in remission so apart from offering sympathy - I was quite underactive during my treatment and underactive is no fun at all, hyper is horrible but hypo is just as horrible in different ways.

I don't know all that much about what happens after a thyroidectomy other than that you will have to take thyroxine for the rest of your life - but I don't know why your doctor isn't testing your T4 and T3 to see what is happening to the Levothyroxine he is giving you - is the T4 being converted to T3 for a start?

There are lots of people on here who know a lot more about life after RAI and TT who will come along and tell you what to do but you need to be feeling a lot better than you're feeling at the moment.

Nothyroid63 profile image
Nothyroid63 in reply to Fruitandnutcase

Hi, Fruitandnutcase, I love your sign in name, and thank you so much for taking the time to reply. Thank you also for your advice. I have been undecided about going yet again to the Drs. as I seem to be on their doorstep, and feel like I am taking up too much of their time.

I am worried about the shaky feeling and fast heartbeat as according to all the posts on site I should be on 1 or below, so with my last TSH I shouldn't be getting those feelings...Oh I don't know perhaps it's just me???

However, I will go back to Drs. (Oh how I dread that as last time he said I was depressed) and ask about the tests - I will even pay for them.

Thank you

Fruitandnutcase profile image
Fruitandnutcase in reply to Nothyroid63

It's definitely not you. I know I had do many strange symptoms that I felt like total hypochondriac by the time I was diagnosed. My heart pounded so much it woke me up during the night. Then a couple of months before things got really bad one doctor told me I needed a holiday! I came out almost crying with frustration saying to my husband that the doctor thought I was some kind of idiot. All the time I really needed some blood tests and my wildly overactive thyroid treated.

I found that every time I needed an increase in my thyroxine I got the hyper symptoms back again pounding heart etc. fortunately someone on here said you can get hyper symptoms when you are actually hypo and that proved to be the case.

Might be worth taking someone with you when you go to the doctor next time. I always wrote everything down and just said to the doctors that I had written everything down because I was so foggy I would forget. I also kept a page with tests and test results plus the lab ranges used and I always made a point of asking for my results and writing them down. That way I knew how I felt at various levels. I also got print outs from the surgery too but I liked to make a point of them seeing I kept my own records.

My husband had blood tests done a couple of weeks ago and went for the results yesterday. He asked the doctor for a print out - he actually said it was for me!!!

Tell the doctor you are not depressed but that you do find the fact that he doesn't seem to be able to get you sorted out and that he is allowing your tsh to lurch from 0.54 to 19.1 a bit depressing. That is awful.

If you were confident in your endo about asking to be referred back to them so that he/she can do more tests and get you sorted out?

I had tests done with BlueHorizon - details on the TUK website - my hospital never ever tested T3 even when it was requested by the endo - the labs seemed to be a law unto themselves. Anyway I got their home testing kit, little mini test tube, things to make a hole in your finger for the blood and generalLy all the stuff you need to get and return a sample to them. The results are back really quickly I had Free T3, F T4 and TSH and some sort of antibodies too - done by them. It isn't cheap, your do get a bit of a discount with TUK which is good but I found it well worth the cost.

No, it is most definitely NOT you, don't even think that ?

Nothyroid63 profile image
Nothyroid63 in reply to Fruitandnutcase

Hi,

Thank you Fruitandnutcase for your kind support and advice.

I have been keeping a record of my TSH results and how I felt. I know if I go over the 2.48 I get more tearful and depressed. The consultant at the hospital last Feb was happy to leave me on 3.58 although I told her I was feeling very down - she just said I think I'll sign you off to the care of the GP. At that point I begged her not too as I was not confident enough to let go of that hand, but that said they have not been much in the way of support unfortunately.

When I went down to 0.54 I felt very frightened, racing heart and whoozy headed. I went to the Drs next day as I actually thought I was having a heart attack. That's when he said 'yes it is a little raised' and told me to go down to 50 Thyroxine, this I did for two months and that's when I found out the TSH had gone to 19.1, by end of December 2014 it had gone to 1.0. Now it's back to 2.41 which I was told was the middle of range and that's fine!

I am worried about the heart thing, but did not understand you can get the same feelings of hyper. if you are under medicated.

The Dr said I should only be getting blood tests every year now, but I feel I can't do that. This disease has taken over my life, and it appears everyone is the same - shame.

Thank you about the advice regarding Blue Horizon. I'll go to Drs and ask first....not holding out too much hope in that direction.

Thanks again, much appreciated

Fruitandnutcase profile image
Fruitandnutcase in reply to Nothyroid63

Very good that you've got notes on your test results and how you feel. You know when you reach a certain point you don't feel good so keep telling your doctor, tell him you've read all about how T4 should be converting to T3.

There's a little book called Understanding Thyroid Disorders by Dr Anthony Toft, it's a BMA book and you can get it in bookshops chemists online. I like it because he is one of the 'establishment' and when I found evidence in the book for how I wanted to be treated I would quote him because he is regarded as 'one of theirs' rather than someone with 'odd ideas'. There is a whole chapter in there on underactive thyroids and he mentions testing TSH, FT3 and FT4 as well as some people needing to be given T3 as well as T4 I order to feel well. It is well worth reading the book and taking with you next time you visit your doctor.

Your endo sounds a bit hard hearted. Hard to imagine turning someone away when they were pleading with you.

I've been told that should I relapse then it's RAI for me but I've spoken with my doctor who says I don't have to have it and they can't refuse to treat me and the reason I don't want it is because of exactly what is happening to you - thyroid out or killed off then you are shunted back to your GP who may or may not give you enough thyroxine to keep you feeling well.

Like the others say, read as much as you can about the condition knowledge is power. It's very hard to keep going when you've been feeling lousy for so long but just hang on in and keep going. ?

shaws profile image
shawsAdministrator in reply to Nothyroid63

Doctors make the worse mistakes by adjusting medications up/down according to the TSH. It causes many more problems as the patient can never get to a stable dose.

I am hypo but know that Grave is hyperthyroidism and become hypothyroid, usually due to operations or antibodies attacking they gland and become hypo.

One of our Admins had Graves is now hypo but only felt much better when T3 was added to her levo. She will most probably respond later. Read the second question (and the first) on this link

web.archive.org/web/2010103...

Nothyroid63 profile image
Nothyroid63 in reply to shaws

Hello, thank you for replying. I am so pleased I plucked up the courage to write a post. This is the first time I have spoken to people in depth regarding my problem. None of my friends or family have suffered from this - I am pleased to say, so when asked how I am I just say 'yeah fine thank you'. People have their own problems, and wouldn't have the time to listen to all of mine Lol, plus I don't want to be the miserable old biddy.

Thank you for the link, I have read it and I will have to read again as there is so much good information to understand - so wish my endo and Dr knew all of that.

Thank you

Nothyroid63 profile image
Nothyroid63

hello,

Thank you so much replying, and for all of your advice. Yes, I agree, although I have been reading all the posts I admit I am confused. Why don't the Drs/Consultants tell you all of these things! The day after my 'op' I was just given the 125 Thyroxine along with a calcium tablet, was told to take the Thyroxine everyday and that was that and out I went.

At my last blood test, I was told not to have another until June. However, I do not feel confident enough let all that time pass without knowing what's going on.

I will definitely take note of your advice, and ask the GP about the Free T4 and Free T3, and also about the vit. tests, although I doubt they will test for that. Also I had no idea about not taking the Thyroxine 24 hrs before the blood test, so thank you once again.

I would just like to know why I can't seem to get the levels right, why I have this fast heart beat and like a lot of other poor folk, why do I feel so down.

with thanks

shaws profile image
shawsAdministrator in reply to Nothyroid63

The reason doctors and consultants don't tell you is that they do not know. Have no idea. It is only through the trials and tribulations of all of us throughout the world that the dots have been able to be joined up and knowledge is gained and passed on. Just like the 'old wives tales' who many found out knew more than most in seeking out natural remedies for illnesses.

Without access to the internet I wouldn't be well now and many others too.

Nothyroid63 profile image
Nothyroid63 in reply to shaws

Hi, I would love to hear from your friend when she has the time. I am also pleased to hear that you are well.

When I told my Endo that I researched the internet about the Thyroid, she said that that is fine, but don't go into it too much as you will only read the bad stories so that will bring you down even more?? However she did not give me any further information about T3 and all of the other tests.

Thanks again, much appreciated

shaws profile image
shawsAdministrator in reply to Nothyroid63

The Endocrinologists belongs to an organisation that guidelines state only prescribe levothyroxine and dose according to the TSH. The professional organisation makes false statements about natural dessicated thyroid hormones which have been in use since 1892 without problems and T3. Very rarely has there been a withdrawal whereas levo has been withdrawn many times. The pharmaceutical companies in the USA are very powerful and 'persuade' through monetary incentives with the result that in the USA levothyroxine is the biggest prescribed meds, and the west has followed, - excerpt:-

The hypothyroid medication levothyroxine (Synthroid, AbbVie) continues to be the nation's most prescribed drug.

The data reflect a rolling 12 months of history (April 2013 - March 2014) on the top 100 drugs by total sales and total prescriptions in the United States.

Following levothyroxine (with just more than 23 million prescriptions) as most prescribed drug in the United States were the cholesterol-lowering drug rosuvastatin (Crestor, AstraZeneca), at about 22.9 million; the proton pump inhibitor esomeprazole (Nexium, AstraZeneca), at roughly 19.3 million;

So you will see that these three, i.e. levo, next cholesterol (a clinical symptom of hypo) and proton pump etc which we can be prescribed if we complain about stomach as the symptoms of high acid and low are similar but hypo usually have low stomach acid so don't need proton pump etc.

Nothyroid63 profile image
Nothyroid63 in reply to shaws

It's unbelievable how these American drug companies are allowed to get away with it, and even more unbelievable how the west has just followed, but as you say they get incentives.

Surely someone somewhere must take notice of all the people on Thyroxine that it just dose not work for all. And, if it keeps getting called back something must be wrong.

I certainly didn't realise that we can get cholesterol problems - seems to me that by keeping us on this drug we must be great 'cash cows' . I have always been fortunate enough to have cholesterol around 4.7, but will have to get that checked out more - thanks again for the advice.

shaws profile image
shawsAdministrator in reply to Nothyroid63

Before we are diagnosed, we usually have clinical symptoms and if cholesterol is higher the GP might offer statins (although they are now getting a bad reputation). They don't know the clinical symptoms or ignore them, i.e. fatigue, pain, muscle pain etc. particularly if TSH isn't high enough, i.e. around 10 for diagnosis. Some doctors will prescribe around 5 if they are aware of the clinical symptoms but some don't. If we should have a higher cholesterol, thyroid medication usually lowers it as our metabolism will be (hopefully) rising with an adequate dose of meds.

shaws profile image
shawsAdministrator in reply to shaws

The BTA makes false statements about NDT (as did the USA) and Dr Lowe sent a rebuttal to BTA and despite him requesting at 3 yearly intervals, the never responded to it. They don't want to acknowledge anything positive about alternative methods.

thyroidscience.com/Criticis...

humanbean profile image
humanbean in reply to shaws

I remember reading a post on here a few months ago, and the poster said something like :

"I told my doctor how desperately tired I was all the time, but my doctor said fatigue wasn't a symptom of hypothyroidism."

I despaired, the day I read that post.

shaws profile image
shawsAdministrator in reply to humanbean

I'm not surprised. How ignorant can the medical profession be and how many very ill people around the country who remain undiagnosed or 'borderline' and untreated.

Hennerton profile image
Hennerton

I too have Graves. My thyroid was removed in 2006 and like you I was given 125 thyroxine and sent home to live a normal life. Sadly it was all a struggle until I found this site, discovered T3, read books and had blood tests for iron and ferritin, which were low. I now supplement iron but you should have a full iron panel before leaping into a supplement, as it will be harmful if you do not need it. I do not believe you need iodine. Your thyroxine is actually made from it.

As for the thyroid medication, I am sorry to tell you your doctor has been ruining your health with his constant jiggling of your dose. How can anyone with no thyroid exist on 50mcg Thyroxine? The TSH of anyone with TT should be around 1 or less. Often it is better slightly suppressed. As Graves patients, our bodies our now set to run high.

Can you possibly change to a doctor who will help you by doing a free T4 and T3 test? It is only when I had one and found that T3 was under the reference range, that I had any chance of putting my health right. If he will not you, can order a full thyroid test privately. (See Thyroid Uk site.) Once you know your blood levels you will know whether or not you are converting the feeble amount of Thyroxine you are getting to useable T3. In my case T4 was very high, as it was not converting and had consequently knocked down the TSH, so that I looked fine on paper but the T3 result showed the real story.

Sorry if this is complicated but I have tried to keep it simple. I feel so much for you in this awful thyroidless mess but with the addition of some T3 to your thyroxine, you will start to improve. Read as much as you can, so you begin to understand and post the blood results for more advice.

Nothyroid63 profile image
Nothyroid63 in reply to Hennerton

Hi,

Thank you. Gosh, I am so surprised and grateful for all of the helpful and sympathetic replies you are all given me, as my first post was so jumbled - thank you. I don't just want to sound sorry for myself, although sorry to say I do.

I will take on your advice about the T3 as that does look to be the all important one, and about the iron. I think it will have to be a private test - which I don't mind, anything to get me back on track and start to enjoy being alive again.

No one, not even the consultant mentioned anything about T3 they just talk about the TSH.

I really don't know why the Dr thought that 50 was fine, but I put my trust in him as he's the expert or so I thought!

I don't really understand why I went back to 1.0 in December then about 6 weeks later went back to 2.41.

Thank you once again, and I will read, although sometimes it is confusing, at the moment I am trying to find a multi vit. tablet that does not contain iodine.

much appreciated

shaws profile image
shawsAdministrator in reply to Nothyroid63

The reason you went from 1 up to 2.41 because you weren't on sufficient medication. 50mcg is starting only and should have been raised by 25mcg around every 4 to 6 weeks until you felt well, not until your TSH reached a certain number. Unfortunately, it would appear we (unqualified) are the only ones who realise this.

Nothyroid63 profile image
Nothyroid63 in reply to shaws

Hi

Well, that's where I am confused. Back in Aug. 2014 when my TSH went down to 0.54 my heart rate increased so much I thought something must be very wrong. Went to the Drs. next day and explained how I felt and he said go onto 50 Thyroxine and get a blood test in 6 weeks. I did, and it came back 19.1. I was very alarmed as I even knew that wasn't normal. I put myself back onto 75 and as I was scared I came off all supplements especially the ones containing iodine & iron as I thought I was doing the wrong thing.

Four weeks later I had an appt. with the Thyroid Eye Disease clinic, the Endo was there as well. So, anyway they did the test on my eye's, I tried to ask about my levels but they were all just chatting about my eye's, although I did hear one of the Drs. make a comment to the Endo about 'he would not have put me on 50, but no one said anything directly to me. The Endo did want bloods test doing, which I got that day. However no one came to me with the results.

As I had an Endo appt on the 19th December I had a blood test at the Drs the week before. Only TSH though, and it was at that appt she told me my levels were at 1 and that was great. She asked me to get another blood in 6 weeks and it was that one that came back at 2.41.

I noticed my heart rate and shaky feelings around the 19th December and I have had those feelings ever since.

That's why I am so confused, about it all. The more I am learning about this Thyroid the frightening it is - I know, yes I turned into a whimp, since this Thyroid thing, I wasn't before! I have taken all of the kind advice people have given me. I am busy reading as much as I can.

Thank you

GERALDDAVID profile image
GERALDDAVID

Hi, I am 67 and had my thyroid removed 3 years ago during surgery for hyperparathyroidism. Had double heart bypass 5 1/2 years ago. A year ago my weight was going up and up, had to have oxygen at night, turns out had sleep apnea. So now sleep with the c-pap mask, get rim sleep for the first time in a long while. My doctor, a heart doctor and my regular doctor, finally let me have T3, liothyronine, which I had asked for earlier. Take 150mg of levothyroxine once a day and 5mg of liothyronine twice a day. I have lost 80 lbs in the past year, most of it early on. I feel so much better! Your doctor should be testing your t4 and t3 levels, many doctors aren`t up to this though. You should read Mary Shomon`s web site, she has much useful information, she is the best. Have you had your calcium checked, your parathyroids are right behind your thyroid and regulate your calcium, without them you will have trouble. Calcium too high or low you will feel bad. You normally have 4 but 1 or 2 will do. I take calcium twice a day, usually, sometimes once. Then take iron when I can because they all have to be separated. Without a thyroid you will need calcium anyway. Hope that helps you out.

Nothyroid63 profile image
Nothyroid63 in reply to GERALDDAVID

Hi,

Thank you for replying and your kind advice. So many people with Thyroid problems.

Yes, I will read the book thank you. It's becoming more and more like T3 could be the problem. I can't go back for blood tests until early March as just had them taken in January, but when I do I will make appt with Dr. to ask about getting full blood tests.

When I had the Thyroid removed they gave me calcium tablets which I took for 2 weeks, the hospital gave me the Thyroxine and calcium together - no one mentioned to keep them apart? They took blood for levels after 2 weeks and said that was fine. No one has mentioned a further tests so I just assumed that all was well, so thank you for the tip on that from.

I am glad that you feel well, and long may it continue.

shaws profile image
shawsAdministrator in reply to GERALDDAVID

I am very sorry to know of your awful problems. I wonder if your Endo would also increase your dose of T3 again maybe reducing T4 slightly. I am hypothyroid and levo was an awful experience altogether for me and I am now on T3 only. I feel very well now. I did try a couple of different T3s but on the one I am taking now suits me fine, thankfully.

GERALDDAVID profile image
GERALDDAVID in reply to shaws

It was kind of rough for awhile but so far so good. As long as I am feeling good won`t tamper with the dosage. My tsh actually got too low .13 was worried he might cut me back. I just said I like it a little low and no problem. I love my doctor, wears funny clothes and has a small black lab, dog, at the clinic. I love labs. Hes not an endo, there are some good ones but they are expensive and hard to find. I got a little hyper for a few days, got some work done that needed doing. I now take my med in the morning, easier to sleep although I had been ok for about a year. It`s all about how you feel. My iron has been a little low so try to work some in. Calcium blocks iron so that could be the problem, you have to be something of a juggler. Take my other t3 1 hour after lunch then calcium or sometimes iron 4 hours later, works for me. I am in USA, Texas, so we have a time difference. How many lbs in a stone? We don`t use that here.

shaws profile image
shawsAdministrator in reply to GERALDDAVID

14lbs equals 1 stone. If meds are working definitely don't mess around and am glad you're feeling better.

marram profile image
marram

Hello NoThyroid, I'm the admin with Graves' and no thyroid. I had a partial removal at age 18 and it became overactive again, so the rest was taken away when I was 36. I was given 150mcg of Levothyroxine and sent away to just get on with it. I was on that dosage for absolutely years, with a GP who really did nothing except give me a blood test once a year. I was OK-ish but never really was able to do anything particularly energetic again, since I would get pain in my legs if I tried to hurry and pain in my arms of I was hanging out clothes. I was told this is as good as it gets, you will never be well again without a thyroid. Be glad you are still alive. Gee, thanks. Actually looking back, he was a GOODIE!

Fast forward 24 years and I moved home at age 60 when I retired and then I had a new GP who immediately told me to reduce my Levo from 150mcg to 100! I now know it was too much at once, and because I had been on Levo-only for so many years, that precipitated a crisis. My cholesterol went up from 4.7 to 9.7 in 8 weeks and I started having mini-strokes, and over the course of the next few years I basically turned into a cabbage, with chronic asthma, three stone gained in weight, puffy face, in fact ALL the really, really REALLY obvious symptoms of hypothyroidism - but my GP insisted "Your 'numbers' are perfect. That is your TSH. Absolutely wonderful. Apart from your cholesterol, of course, so we will give you some statins, and some blood thinners, here's an extra inhaler, a preventer to go with your reliever. Tired? Well some people are just, well, tired. You are getting old. Are you depressed? Fill in this scoring form, and if you score positive for depression, I'll let you have some anti-depressants to add to your growing pile of medications. Thyroid? Oh, no. Nothing to do with thyroid."

But it WAS thyroid. As I found out after 8 years of misery and having become a cabbage.

Now I am 70 and look better than I did when I was 61, a year after the worst doctor in the world almost killed me from a stroke. Now, I know that the doctor was 'following guidelines' but the guidelines he was following was for hypothyroid people who still have a thyroid. And even then, those guidelines don't work much of the time.

When I was so poorly, my TSH was 1.4. And I nearly died. I went on T3-only, plus a lot of vitamins and minerals, to support my by then almost broken-down body. Two years later I am more healthy than at any time since my Total Thyroidectomy. Look at my profile pic, I think you will agree I look healthy and happy.

So my advice to you is, be proactive, and ask for a referral to an Endo. If you can't get one, there is the private route, and Thyroid UK is very helpful if you decide to do that. Having Graves', even though your thyroid has gone, means you will always have Graves', and that makes a difference to how you react to the thyroid medication. You may well need Liothyronine (T3) as well as, or instead of, Levo thyroxine (T4), because the Graves' antibodies can suppress your TSH and make it completely useless as a guide to how you are doing.

Most GPs think that the stadard TSH test is enough but you really need to have your T4 and T3 tested. You can get s home fingerprick test from Blue Horizon if you cannot get your GP to agree, or if he cannot get it tested as often happens - he might ask but it is not done.

In addition to knowing what your Thyroid hormone levels are, you really need to keep an eye on your vitamin D, B12, and iron, ferritin and folate. If you start early, being proactive and be aware of the need to have these things monitored, you can be spared the experience I have had. You can live an active, happy, healthy life with the right thyroid hormones.

I know this is a lot to take in, but you are right at the start of a journey that many of us have travelled, some with no guidance whatsoever, until we found Thyroid UK. It has saved my life - no beating about the bush. You're not alone.

Start with getting your FULL thyroid bloods done including T4 and T3, and then take it from there. Any problems, you just have to ask.

Marie XXXXXXXXX

Nothyroid63 profile image
Nothyroid63 in reply to marram

hello, my apologies for just replying to you now. Thank you so much for taking the time to write to me with good advice, I am more and more in awe of you all on this site. I feel such a whimp moaning on when so many people have had such a rough miserable journey.

Happy birthday Marie, you do look amazing, and many,many happy returns.

I cannot understand why the Expert Endo's do not recognise the fact that 'Graves' patients need this T3, and why I am not being tested. I know I was told not to get tested again until June, but I am going to make an appt. with my GP at the end of Feb as I feel I can't wait until June not if my levels are on the way up. I'll pluck up the courage to ask about the full test and the vit. tests - but I don't think they will want to fund those so I will ask about going private.

I have to have B12 injections every 3 months because of the UC, again that was autoimmune as my colon stopped extracting the B12 when I was in my 30ties, but perhaps now that I have no Thyroid my body can't get at it - so to speak'

Thank you once again Marie, I have found your other posts so reading through them. With all best wishes,

Jacquie

Clutter profile image
Clutter

Nothyroid, Annual thyroid tests are fine once levels are stable but the fluctuations in your levels are certainly not stable and this will be, in part, because of your GP changing your dose frequently. It's inconceivable that a thyroidless patient can manage on 50mcg as your subsequent results showed. There was nothing wrong with TSH 0.54. If your GP suspected overmedication s/he should have ordered FT4 and FT3 tests.

Your GP should test FT4 and FT3 because a low TSH doesn't mean you are converting T4 to T3 well. Not having a thyroid means there is nothing for TSH to stimulate but FT4 and FT3 will measure the level of hormone you are converting from Levothyroxine. Many thyroidlesss patients don't convert sufficient T3 from T4 as up to 20-45% of T3 is produced in the thyroid gland.

nature.com/nrendo/journal/v...

eje-online.org/content/161/...

If your GP won't test FT4 and FT3 you can order private tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

You might consider seeing another GP at your practice or even changing GP because yours, like many, doesn't seem very knowledgeable about thyroid. You may need some T3 added to your Levothyroxine if your FT3 is low but you will probably need referral to an endo to get it prescribed.

Nothyroid63 profile image
Nothyroid63 in reply to Clutter

hello Clutter, many apologies for just replying to you now, and thank you for you most informative reply. You explained the converting very clearly - thank you. I have made so many notes from all of the kind replies I have received, and also a reading list which I am working my way through. Such a lot to take in, but I will read and read, as I said to 'Shaw' in an earlier reply, the more I am learning about this Thyroid problem the more scary it is becoming.

Why doesn't the Endo's know all of this? I can understand the GP's not knowing everything, but the Endo's????

My next scheduled appt. at the Endo's is not until June. However, I can't wait until then for my next blood test not if my levels are now going up. I'll make an appt at the GP's and see if he's up for a chat about the problem, I'll have to make a double appt. though as I can't explain all of this in 5 mins.

Thank you Clutter

Muffin7973 profile image
Muffin7973

You should take NDT. I take Armour Thyroid It works the best for me. There is Erfa in Canada. NP Thyroid by Acella Nature Throid. I had Graves before thyroidectomy but also pap cancer. Can you find a Doctor to prescribe NDT. Call around to pharmacies to find out who prescribes. I found a difference and improvement as soon as I started to take. Muffin7973@aol.com

Nothyroid63 profile image
Nothyroid63

Hello Muffin7973, apologies for just getting back to you now, and thank you for your advice. I have to wait for my next blood test which is around mid March, but it will be just TSH. Once I get the result I will be making an appointment with the Dr to talk about testing for T4, T3 and vitamin levels as these seem to be the important results. Don't know how receptive he will be to my request, but I'll have a go.

I will also ask about NDT - see how that goes. I am pleased you are well on NDT.

kind regards

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