my endo has been amazing from the beginning and is a nhs doctor

[debbiejoyce]

I just feel there is a lot of negativity of nhs endocrinologists on this site, and would just like to say mine has been so caring and understanding from the beginning. I did take a long time to find out i have graves disease and i have had the worst couple of years of my life with graves, but i have always found them caring and they have ordered every test possible for me. I have still not finished as i am waiting to have a total thyroidectomy but found the team at my hospital certainly went the extra mile with me.

[Hidden]

Hi Debbie

That is really great to hear!

Unfortunately, a lot of people have had not so good experiences, but there are also others with supportive endos.

Have you left feedback in the Hospitals section of this site?

Could you please also drop me an email with your Endo's details? I can add him/her to the very short list we have in the office. Thanks.

[e-mail]

Louise

xx

[debbiejoyce in reply to Hidden]

Professor Brabant at wythenshawe hospital in manchester xx

[ChemicalAngel]

Its lovely to hear that someone has got a great endo.

[Glynisrose]

Lovely to hear but unfortunately unusual!

[babycatcher7572]

Hi... It's great that you have found a good endo.... Hold on to him!! I would love to write a positive comment about mine but just can't...they were appalling. I've had 2 that have written me off with CFS or depression. I'm now on Levo and t3 under Dr P. Hugs

K x x

[marram]

Hello Debbie

I am delighted for you that your care has been good to date. I had Graves' Disease as a teenager. I had wonderful care and a subtotal thyroidectomy at 18 which had to be followed up with a total at age 37.

Initially I was well cared for with T4 replacement which seemed to suit me with just a few symptoms remaining. But then, around the time the doctors started looking at computer screens instead of the patients. that's when my problems started. My replacement thyroxine was reduced, leading to all sorts of hypothyroid symptoms.

It's early days for you but forewarned is forearmed. Treatment of overactive thyroid has always been pretty good, it's when you need replacement therapy the fun starts.

If you insist on adequate replacement from the start, you will get better faster. It may take up to a year before you are on the optimal dose, then you will probably be transferred to your GP for ongoing care. Accept no nonsense from him! Once you have had a TT your dose can and should remain stable, with the TSH around 0.5 for you to be well. I wish you well for the operation.

Marie XX

[debbiejoyce in reply to marram]

Hi thank you for replying, my endo said i will remain under them for life, and once they get my levels right on thyroxine they will probably only have to see me twice a year for blood tests. How did you find the operation? xx

[marram in reply to debbiejoyce]

I took the first op better than the second, but I had been really ill (thyroid storm) before the second. Even so I didn't find it too bad.

I was on propranolol beforehand to calm my heart down and then when I went in for the op they also gave me Lugol's Iodine to calm the thyroid as well. (It has to be taken in a small glass of milk with a straw otherwise it burns the mouth!)

Afterwards my throat was very sore, but soluble Sopadeine before meals enabled me to eat and drink. It didn't last long, I had the TT on a Friday and went home on the Monday! I am a tough cookie as I was a single Mum so no long rest for me!

I mention the Lugol's in MILK, and the Soluble Solpadeine because I have heard of others who did not have that, just in case that is your experience, at least you can ask. (I'm not sure if they still give Lugol's.) I do really hope it goes well for you.

Marie XXX

[skyfall]

who's your endo - that sounds amazing...always great to hear. Good luck with thyroidectomy. x

[snowstorm]

debbiejoyce - what a lucky bunny you are. It is rare for this situation to be thus from the start. Have to say though, my 2nd endo is an awful lot better then the first, so I have got somewhere. He even agreed that there was a possibility my system might reject T3 as well -- hence the minute dose of 1/4 of 25mg daily to be reverted to every other day if required.

So you are right. Some out there ARE great. Hang on to him/her. It takes alot of the stress away knowing you are in good hands which always helps in recovery.

[Kangagirl in reply to snowstorm]

How wonderful , if unusual to hear some good news about NHS endos. Good luck with the operation and the care afterwards.

I don't want to hijack the thread, but could I just ask snowstorm a question? I'm also on a tiny dose of T3 - about a third of a half of a 25mcg tablet - if that makes sense - but every day, or rather I take it in the early hours of the morning. I can't seem to tolerate more, and find I have to take a day or two off about every two weeks anyway.

Can I ask you how you're feeling on a small dose, and are you taking anything else with it - any T4 or NDT? I'm kind of working on the hope that even a small dose will whittle away at my sky high TSH (since I had to stop taking levo), and in time I'll feel better than I do now. I was prescribed 5mcg twice a day, but haven't been able to take even that much so far.

For me, the T3 was the least bad of everything I tried since the T4 bit back. But I don't know if I'm kidding myself that a very small dose is helping a little bit, especially when I see how much some others are able to take. I feel that I 'ought' to be taking more, but I just can't. I haven't had any tests since starting this regime, I'm kind of putting it off in case everything turns out to be just the same as it was before, and feeling a teeny bit better might be an illusion! My GP doesn't care if I have any tests or not so it'll be up to me to request one.

I just wondered if you're benefitting from such a small dose? I hope so. Sorry to jump in on your thread, debbiejoyce, good luck again.

Kanga x

[snowstorm in reply to Kangagirl]

Hi Kanga --- doing alright, BUT, took myself off it for a week as some nasty side effects returned and I couldn't live with that. The first test revealed that the TSH had come down from 14.5 to 11.5 --- so it is working, slowly. T4 was just a disaster for, and clearly it is for you too. It doesn't suit everyone. I have (well I think its was successful) started a petition for greatly improved testing before people are put on any form of thyroid medication. Am also writing to my MP and will ask for an audience. So we will see what happens there. Am due another blood test in a few weeks --- it will be interesting to see if the TSH is down further. Frankly, I don't care. I will do what my body tells me to do - if side effects increase, I'mm off it. Suggest you have no improvement then it is not the right medication for you.. How are your adrenals? Happy to help if I can. Take care. Storm x

[Kangagirl in reply to snowstorm]

Hi, thanks for the reply. I didn't really have any options left as I tried 2 NDTs which only made me feel worse, and trying four times to go back on levo, which was a nightmare.

It did cross my mind that I may have become intolerant to T4 in any form, even the natural in NDT - I couldn't find any info on this, just a thought. I don't know if this is even a possibility.

I agree that you have to go by the way you feel rather than the TSH, but I was a bit alarmed that mine shot up to 150 once I had been off the levo for a while, and after initially feeling better, of course by that time I felt like hell. I was worried about the implications of having a TSH that high or higher, in the long term. I was hoping that if I could get it down, while not actually relying on it for anything, I would inevitably feel a bit

better.

I do have to perodically have a couple of days off it, but I'm trying to persevere as there isn't really any other option left - a least nothing that I can get hold of. Purified levo and liquid levo aren't even gettable on the 'underground' network, and what's the use if any kind of T4 is the probem anyway.

I gave up expecting the 'lightbulb moment' that people speak of when taking T3 - I just wanted something that I could at least tolerate, even if only in small doses, something that I didn't have to stop after a few days because I felt so bad. Even if I wasn't getting huge improvements, which I didn't expect on just a crumb - anything is better than the way I was feeling.

I hesitate to say I feel loads better - anyway I don't, but T3 seems like the least bad of everything I've tried. Talk about damning with faint praise!

I had some tests for adrenals and they seem to be OK, which I was quite astonished at. Surprised I had any left to test, after the bashing they've had over the past few years - stress etc, not hard drugs or anything. Still I'm doing my best to look aftr them, though not taking any medication. I don't want to upset things by adding extra stuff if I don't have to, as I seem to over react to everything. Also trying to keep the essential iron an vits up to speed, which they aren't yet, but slowly going in the right direction.

I was terribly worried when I felt like absolute hell and was taking nothing, so maybe taking a small dose of T3 has a psychologocal effect as well. I feel as if I'm doing SOMETHING, even if not much. And it has made a little bit of difference, even if not very radical or very fast. And even feeling 'OK- ish' some of the time is better than feeling like living hell ALL the time. How little we settle for when we don't have the choice!

I'm glad to hear that you're getting some benefit from the T3, even if again it isn't exactly the Holy Grail we all hope for.

Good luck with your MP - I do admire your energy and spirit. Have I signed your petition? If it's been on here I probably have.

Thanks for your interest, and all the best.

Kanga xx

[starlight17 in reply to Kangagirl]

Hi Kangagirl - just had to reply to your post! I was diagnosed hypothyroid 7 years ago. They suggested i start off with 150mcg of levo well thank god I didn't trust the endo because I took just a tidy dose a quarter of a 25mcg tablet and I had the side effects from hell! I have spent the last 7 years taking tiny doses and increasing them very slowly every week. I have now managed to take 50mcg today and that is a miracle I am so proud of myself! I did visit an endo in london who said that I had a vitamin d deficiency and he thought that might be adding to my problems - well since I've been taking the vitamin d I have managed to increase my levo more quickly and have had less side affects - I have no idea whether this is just a coincidence or not.

[Kangagirl in reply to starlight17]

Hi Starlight17

Wow! Thank goodness as you say, that you didn't go straight in with 150 mcg! That seems like quite a high starting dose anyway. Have you noticed that just lately there seems to be a bit more info about tests they are supposed to do before prescribing thyroid meds, adrenal function to name but one. But they never do.

Hats off to you for persevering for so long - seven years! It's been such a long road for you, I don't know if I could have done it. I feel a little bit less embarrassed at the crumb of T3 I'm taking after hearing your story.

Congratulations - if that's the right word - for getting up to 50mcg. You have every right to feel proud of yourself. Given the difficulty you've had that's a real achievement, and I hope you feel a lot better.

I was very lucky when I was first diagnosed HypoT when they were testing for something else. I didn't really have any symptoms then except fatigue, and I'd had that for years anyway.

I was prescribed 25mcg of levo, and although I resisted taking it at first, I had dire warnings of madness from my GP, so thought I'd better! I never felt any difference whatsoever - not any better, not any worse. In the end I took it for 12 years, and they gradually put the dose up to 125mcg. Never felt ANY different.

I didn't know very much about the thyroid or what misery and havoc it could cause - I suppose my TSH was going down, which kept the doc happy, but I never felt any different so didn't question anything.

Then last March I had a really bad reaction to the levo, and looking back I think it might have been building up for some time. I'd had a nasty itchy bumpy rash on the bottom of both legs for about three years, which again thinking back more or less coincided with my dose going up to 125 mcg, but I never connected the two at all, nor did the GP. And I was away for a week once and left my tabets behind, and I felt rather a lot better than usual, but put that down to coincidence or imagination. I was also getting hot flushes which before were well controlled with HRT patches. When I stopped the patches, I just thought the flushes were going to last until I was 100. But they went almost completely when I came off the levo, and so did the rash.

Unfortunately, after about a month of feeling great, in every other respect I felt like hell!

My health before wasn't exactly great, but I could at least function, which is more than I can say about the past 10 months, trying to find something to replace the levo. I tried four times going back on just 25 mcg, but felt like death. I can't understand it at all, but my endo said that you could develop intolerances out of the blue for no reason.

My Vitamin D and iron were very low, and she said that could be a factor, so it might be the same with you. I don't think its any coincience that taking vitamin D has helped you, and at least the endo you saw flagged that up which makes a change.

My endo also said I might find it hard to tolerate the T3 with low iron, and that was the case.

I wouldn't have known anything about any of this if I hadn't come across this forum - anything I know, I've learned it from the people on here.

So if it takes me seven years to get my T3 up, (I don't even want to think about it!), I shan't feel so bad about myself! Thank you for telling your story.

Well done again, and I hope you continue to improve in leaps and bounds.

Kanga xx

[ValSue in reply to starlight17]

Hi Starlight17 - I can empathise with your experience. I also have terrible side effects on small amounts of Levothyroxine. It took me 3 years to reach 50mcg. I was also diagnosed with Vitamin D deficiency last October, and on prescribed supplements. Starting to feel better, but getting that hypo tiredness, so might need to increase the thyroxine again. Maybe I will be able to increase more quickly this time. Thanks for giving me that hope!

[snowstorm in reply to Kangagirl]

Something has occurred to me --- Have you had B12, B5, B6 and Vit D tested? These could prove crucial with regard to mood swings, brain fog, memory, concentration, adrenals, energy levels and general mental well being. I suspect you have along with the ferritin, magnesium, folate etc. Will keep you posted. Storm xx

[snowstorm in reply to Kangagirl]

Hello Kanga, been browsing through all the health unlocked & TUK blogs so thought Ild update you on situation. Did have to take myself off T3 for one week having gone to taking 1/4 tab everyday - after 6 wks same old story re side effects. 1/4 tab every other day just about tolerable. However, had Vit D blood test --- range 50-250 mine at 54!. So says I to GP "That is far too low" "Well you are with in range!!!" So, off to Holland & Barrett, got Vit D3, (no calcium)two a day, and very slowly started to see an effect. Still a long way to go. But hey, anything is better than nothing.

[Kangagirl in reply to snowstorm]

Hi Snowstorm, thanks for the update. It's slow going, isn't it, and as far as Vit D goes, we aren't going to get any from the sun by the looks of it. I don't think this awful weather is ever going to get any better.

I'm about the same as you with the T3 - still taking the third of a half every day and don't seem to be able to increase. In fact I miss it by accident sometimes - I find it suits me better to take it about 3.30am, and there are times when I wake up in the morning finding I have turned off the alarm presumably in my sleep, and the crumb of T3 is still sitting there!

I don't honestly know if it's making that much difference, just as I say it seems to be the least bad of the choices - though sometimes I wonder if I'm doing the right thing. As you say, hopefully anything is better than nothing.

When this all started a year ago I had a Vit D home blood spot test from the hospital in Birmingham, and the result was abysmal, something like 11.9. The D3 spray made me sick, so I have been using patches and on the suggestion of Rob I've been cutting open the capsules and rubbing the oil on my skin - no idea if this works. I also forked out quite a lot of money for a narrow-band UVB lamp, but keep forgetting to use it!

My GP grudgingly had a test done after my private endo told him to, and the result was 27 or something like that - I'm having difficulty remembering after all this time -so although it seemed to be going in the right direction albeit slowly, it was so low it probably wasn't helping at all, ditto the low iron. Needless to say, the GP didn't give a monkeys.

I really should get the vits and iron checked to see what's happening - same with the TSH, T4, T3 etc, but the vits and iron at least mean more expense, and I don't want to find out that all my efforts have been for nothing, as I don't feel that much better to be honest. I'm afraid to stop the T3 because I felt so bad on nothing at all, so maybe it is having some effect although it doesn't feel like it sometimes. It's such a minefield with everything else you have to take into account.

I'm glad you're seeing some effect at last, and hopefully that will continue. I must say I never imagined my life taking this path when I was merrily (well, ish) taking the levo each day without even thinking about it or noticing any effect, good or bad. It was so much easier, if I could go back on the levo without feeling as if I might die, I would do it tomorrow.

Thanks for keeping in touch, and do let me know how you're getting on. Maybe we should form a splinter group, 'The T3 Crumb Bunch'. Well no, that would be a Crumb group, wouldn't it.

Kanga xx

[snowstorm in reply to Kangagirl]

Hello again, oh I do like The T3 Crumb Bunch --- great, made me laugh. Like many of us, 8 years down the road thyroid no difference ie not better. Just worse with all the side effects. Have had to stop doing so much because of physical nonsense or fatigue - much the same as so many others. Lets hope what the Scottish Parliament is doing will filter to the UK!!! We live in hope. ANO blood test coming up tomorrow which will be interesting. This will be followed by a health check at our surgery by the Sister --- so will have a good old moan then. Take care.

Storm xx

[Kangagirl in reply to snowstorm]

Glad to have raised a smile. Sometimes it really is a case of not knowing whether to laugh or cry - I know what I do the most of, and it isn't normally laughing!

Not a lot of fun in watching your life flying past at a rate of knots and thinking of all the things you used to be able to do. Up until a year go, even with the CFS since 1972 and HypoT since 2000 (or at least diagnosed 2000), I was still able to function more or less. These days I hardly ever leave the house, yes like so many others.

I do so admire what the two ladies did at the Scottish Parliament, it was amazing. We can only hope, but somehow I don't think our plight is very high up in the order of importance with our lot. I don't think any of them know or care what normal people think or feel let alone people like us. But hey ho, I guess we're used to going it alone.

If this isn't dumb question, what is an ANO blood test? I probably should know. Anyway, good luck with it, and if you do get the chance to bend any ears, go for it.

Take care,

Kanga xx

[snowstorm in reply to Kangagirl]

ANO is simply standing for another. You're right, this plight requires a minimum of 100,000 signatures before it would even be looked at never mind considered. One day they will wake up - probably when someone dies --- sorry

Tired now: will keep you posted.

Storm xxx

[Kangagirl in reply to snowstorm]

OK, thanks. I thought it might be something I stupidly should have known about but didn't. Yeah, one day, hopefully while we still give a damn.

Past my bedtime too, so goodnight.

Kanga xx

[Hidden]

I think we speak as we find, which is why feedback about endos and GPs is negative, and that the treatment of Graves initially is much better than it is for hypothyroidism. At least you got a diagnosis. They can't deny that you have got the disease as they can with hypothyroidism. Marie is offering really sensible advice about replacement.. Good luck.

[Marz]

Pleased you are receiving good support. Just don't forget to interview your surgeon before your total thyroidectomy. Firstly read up on the information regarding the thyroid and the parathyroids. It is important that care is taken to retain the latter as they have a role to play with calcium levels in the blood. This information is well explained in Dr P's book - Your Thryoid and How to Keep it Healthy. Even without a thyroid his book is useful. So keep them on their toes with the information you have gained.

Your Endocrinologist may not be your sugeon. Good Luck and keep us posted.....wishing you well too.

I do not have personal experience - just the experience of others.

[shaws Administrator]

I am glad you have found caring and helpful professionals. Some members have also said they had found good Endocrinologists.

On this Forum it would appear that most complaints are the inefficiency of levothyroxine for many and who are unable to source alternatives even for a trial period. As well, the guidelines by the British Thyroid Association are that medication should not be prescribed until the TSH reaches 10 which leaves many people suffering unnecessarily or undiagnosed despite clinical symptoms.

Best wishes.

[Hidden]

You have been lucky - cherish that doctor. If you're even luckier and have a GP who is thyroid-savvy (cos you'll need him/her down the line) raise a lusty cheer.

You might mention to your lovely endocrinologist - casually, in passing sometime - what a bad press they have on here and see what s/he says. Is the profession aware how poor we find them (by and large)? Do they think they might be able to do anything about that? Or do they consider they know what's best for us, despite how we report we feel?

[Hashoo]

Sounds like you're lucky on 2 counts....1 (as everyone else said) that you managed to get a thyroid savy Endo! and 2 - that you actually got to see an Endo...my GP still thinks he can manage my Hashimotos even though he's following the info I give him...not sure why he can't see that it should be the other way round but at least he's helping, unlike some GP's who fob people off 100%. Good luck

[snowinok]

My endo is lovely, he's really sweet but he cannot think outside his box and I suspect he has not done any refresher courses or read any new data...he is stuck in the Middle Ages...or perhaps it's about money..but him being a really sweet guy dos not help my condition.

i live in the States now and was hoping for better treatment but my gp refuses to put anything other that synthroid on the prescription, and the endo is of the same opinion....I am moving soon so will be doing lots of research on a new endo who will consider another treatment.

It is very refreshing to hear that you have not only a great endo but a great team behind you also...hearing this is always uplifting and hopeful that others will follow suit.

Good luck x

[snowinok]

I should have added that my GP does admit that she does not fully understand hypothyroidism and works within her guidelines set out by the insurance company...she has no problem is I find an endo who will prescribe T3/T4 combos or armour...I just have to get referred to an endo who'll prescribe it to me at my expense.

[thecookiemonster]

Im so pleased you have an NHS Endo who you consider to be spot on. Iv,e got my first ever appointment with one on the 21st March, so I.ll let you know what I think. But yes you are right in saying that there has been alot of bad comments on this site re Endo,s - I,ll keep an open mind. Best wishes, Kath

[dylansmum]

Hi All

I am new to all talk of thyroid medication. I was diagnosed 15months ago, and was prescribed with 125mcgs, (1st prescription) which I took, without any thought. I am suprised that some people are working up, and starting on low doses. How did they know that a high dose was/could be wrong?. I didn't have any idea what dosage is good or bad or high or too high I just trusted my GP. I am still on 125mcg, but without asking, have to see a endo, as I still feel ill. I am totally at their mercy, as I haven't got a clue about T3/T4 etc. I know one thing though, I felt sooooo much better, not taking Levothyroxine, that I wonder if they have wrongly

diagnosed me!

[Hidden in reply to dylansmum]

Hi

Can I suggest that you post this as a new question - comments can sometimes get missed.

Louise

x

[despair1]

That's good to hear amongst all the disheartening negative comments about consultants. I am due to see an Endo next week. Does anyone know of an endo with a good reputation in the south of England, say Dorset, Poole, Bournemouth?