NHS Endo

[Aretak]

Has your GP referred you to an endo when you asked?

[Flecmac]

Not straight away for me, kept being told no need to see one and GP said she wouldn’t know what to tell them (derrrrrr! How about telling them my TPO antibodies have been 1300 (0.00-60) for at least the past 10 years = Hashimoto’s!!!). However last year I pushed hard and insisted as I was so ill had to cancel a much needed holiday. I was referred to nhs endo who was awful and so put in complaints to CEO, Pals and CCG. His response was total denial of my claims!!! Always worth a try though as you may be lucky, and if not at least you should get all the relevant tests done. Good luck!!!!!

[Aretak in reply to Flecmac]

Thanks for the info mcdermott. I'm going to see my GP tomorrow as I found out yesterday from others here on the forum that I'm under medicated. They put me on 50mcg levo and it's been over a year. They haven't increased the dose and of course I've been feeling tired all the time, can't loose weight even though I changed my diet. A few weeks ago my gut started to play up. I feel bloated all the time so two weeks ago cut out gluten. Feeling a bit better, but will see what they say. I hope my GP gives me a referral as she hasn't even told me if I have an autoimmune thyroditis or secondary hypo... I have a feeling I will have a bad morning. Then I will have to find a private endo which will be expensive. Luckily I found this amazing forum where we can all share our experience and look for advice. Thanks again for the info, at least I know what to expect.

[greygoose in reply to Aretak]

It's easy for you to know if you have secondary hypo just by looking at the results from when you were diagnosed. If your TSH was low but your Frees were low, then it's secondary. If the TSH was high and the Frees low, it was primary. But, to be honest, it's very, very rare to get diagnosed with secondary hypo by a GP. Most of them have no idea it exists! For autoimmune thyroiditis, no-one would know unless the antibodies have been tested, so they wouldn't be able to tell you.

But in all cases, the treatment would be exactly the same. There is no treatment for antibodies, just thyroid hormone replacement to replace the hormones, your thyroid can no-longer make.

[Aretak in reply to greygoose]

Thank you greygoose, I will have a look again on my results. Still learning and trying to understand about my health condition and generally learning about hypothyroidism.

[greygoose in reply to Aretak]

You're welcome.

[SlowDragon Administrator in reply to Aretak]

First step is to get printed copies of blood test results. You are legally entitled to printed copies of your blood test results

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. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018)

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 too, especially gluten. So it's important to get antibodies tested.

50mcg is only a starter dose and bloods should be retested 6-8 weeks after any dose change. Dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range.

Medics often ignore antibodies but it's essential to know. If you have Hashimoto's then many, many people find strictly gluten free diet helps.

[Aretak in reply to SlowDragon]

Thank you SlowDragon, lots of great info. I wrote them down and will ask my GP tomorrow. It will take a few weeks but will post my results.

[Flecmac in reply to Aretak]

Same here!! I saw private Dr who specialises in thyroid problems 10 years ago, he couldn’t prescribe, but told my GP to start on 50mcg and he intended to increase eventually to 100mcg. GP obliged, but when tests showed TSH below 1, GP reduced to 25mcg warning me of heart failure, I panicked and reduced, I never returned to private GP, wish I’d known about this forum then! Eventually GP stopped thyroxine as wasn’t making any difference, she failed to tell me how high my antibodies were and still are. I became very ill over the next year. I pressed for endo referral and insisted in re starting meds, she agreed to 25mcg. After 4 weeks I pushed for 50mcg, next test showed TSH below 1 and she reduced to 25mcg again. I am now trying to get back up to 50mcg!!! I have also pushed for a second opinion by another nhs endo, although I don’t hold out much hope!! I have been gluten free for 6 months but it hasn’t really made much difference in fact the bloating is worse now. I found a private endo last year the only one locally who had good reviews, then discovered on here that he didn’t even do TFT’s and was no help, so at £250 an hour, I didn’t bother! I do wish you all the best and I hope that you are successful, it is SO hard!!!! I have a friend who was diagnosed 30 years ago by GP at my surgery, one that understood thyroid disease......the old GPS back then DID!! She has been on high dose thyroxine ever since. She has enjoyed the best of health!!

Good luck!!

[Aretak in reply to Flecmac]

Thank you mcdermott. I can only hope I'll have luck as my GP is not so great, I may have to change.

[Peanut31 in reply to Aretak]

Hi Aretak

From my own experience, seeing an Endocrinologist was a waste of time and money (I paid privately to see him)

Cut a very long story short and not to sound like a broken record as I’ve posted my story on here many times

He diagnosed me with Hashimoto’s, (blood test confirmed this and a scan) but, all he seemed to concentrate on was my vitamin levels. They were low, but I managed to get them to the accepted level.

It’s only when after spending hundreds of pounds and turning to this forum for help I became more knowledgable.

I asked him if he could start me on Levothyroxine as I wasn’t improving, despite me going gluten and dairy free (advice given on here, not by him)

Told me that no medication would help. Oh yes tried to fob me off with anti depressants, which I refused to take, and told me to go on holiday after this he lost all his credibility.

I then turned to my surgery to help (recently moved areas) and saw an awful GP, she basically said how could she help when the Endocrinologist said he couldn’t help with medication, and it was anxiety.

Fast forward Christmas I was very ill, it was touch and go whether I could manage to get dressed and go out for my Christmas meal.

I managed this but, Boxing Day I was in bed and the following days no energy.

Hubby took me back to the surgery and we saw our allocated GP, off course I looked awful.

He ordered bloods, full thyroid and within days the surgery text me to contact them as the GP wanted to see me.

I got an appointment and the GP said no wonder I felt crap (his words) TSH 12.2 and other results sky high, antibodies had also got worse from seeing the Endocrinologist.

He was very cross at the Endocrinologist and proceeded to say I was a straight forward case and should of been treated with Levothyroxine, this Endocrinologist was also known to the GP and his words were NOT very complimentary of him.

I started on 50mcg, then increased, now on 75mcg of Levothyroxine with a blood test booked shortly for a further increase.

Hopefully, your GP will increase your Levothyroxine as you need it increasing and 50mcg is only a starting dose anyway.

Listen to the people on here, they have helped me no end.

Good luck

Best wishes

Peanut31

[Aretak in reply to Peanut31]

Thank you Peanut31. What an awful experience you had to go through. To be honest last week I felt very similar, even my employer noticed it, I looked like a sleepwalker. My gut is also up and down. Most of the time bloated and experienced random diarrhoea😣 And yes my weight loss journey isn't great either. It will take a couple of weeks to get my test results, will post them to here. Hope you feel better on 75mcg. I will also ask my GP to increase.

[SlowDragon Administrator in reply to Aretak]

Ask GP for coeliac test, as well as vitamin D, folate, ferritin and B12

Plus thyroid antibodies

Personally yes, it's has been extremely helpful. It must be a thyroid specialist, not a standard endocrinologist (mainly Diabetes specialists) More on my profile

[Aretak in reply to SlowDragon]

Thank you! I will!

[Peanut31 in reply to Aretak]

I experienced bloating all the time, started the moment I wake up, popping noises, but I was constipated not diarrhoea.

I had a gluten sensitivity test and it came back negative.

After the hopeless Endocrinologist and thinking no one would help, I turned to a nutritionist.

We did an in dept food testing and I was actually intolerant to gluten, and dairy, and lots of foods flagged up as red.

Since I’ve excluded them I’ve been so much better. Per advice on here, give up gluten and dairy is a good idea.

Gluten easy, diary not as easy but, you get use to it.

I went mad at first buying everything gluten free, this was not the best idea as some tasted awful and expensive, but, I didn’t want to feel deprived.

Although I did eat healthy, always had to watch my weight (now I know why, underactive Thyroid) I’m eating a more healthier.

Definitely more fresh food, and cut down processed food dramatically, and given up my diet fizzy drinks. I have stir fry’s, salads, homemade soups, plenty of vegetables.

I’m been experimenting recently, I cut down my carbohydrates and stopped snacking in the evening completely.

I’ve focused on having more protein, the reason for this, is I’ve been noticing I’ve been gaining weight, not a load, but pounds creeping up.

I’ve also not been to the gym recently and noticed that I’ve still lost weight.

It backs up what so many people say on here that high intense workouts don’t suit Hashimoto’s, and underactive Thyroid.

Obviously, once you are on the correct dose, your metabolism should stabilise and help with your weight. I’m hoping it will help with my temperature as always freezing cold.

Best wishes

Peanut31

[Aretak in reply to Peanut31]

Thank you Peanut31. I started to eat healthier a few months back. To be honest I had a sweet tooth🙁 but managed to cut out sugar, do get some sugar craving here and there, but I've been strong and have fruit instead. I cut out gluten two weeks ago and did notice some improvements. No more random diarrhoea and feeling less bloated. Haven't had dairy for a long time now as that made me bloated years ago. I'd prefer to eat wholemeal foods instead of processed food. My other problem I have to focus on is the water intake (filtered!). I given up cardio exercise last year and started resistance band pilates about over a month ago which does make me feel better even though I do it after my 12 hour work as I'm desperate to lose some weight. Last week couldn't do any as felt exhausted, did go for dog walking though.

Best regards,

Aretak

[Peanut31 in reply to Aretak]

Hi,

If you have a sweet tooth, perhaps try a small amount of dark chocolate the higher % the better, watch out though as some makes contain gluten.

There are diary, gluten free chocolates think they called moo free or something.

My son brought me some for Mother’s Day as a treat, delicious.

I make sure when I go to work (travel for an hour in the car) I take a water bottle and make sure I drink it all on the way, then keep filling it up at work, then again fill it up on the way home. I have fruit tea as well and limit my coffee, (Black) as this can interfere with Levothyroxine.

Toilet trips are more frequent though since increasing my water intake!!!

Walking is very good, in fact that is how I lost my weight originally many many years ago. I walked everywhere as a student.

Until you sort your thyroid medication all the exercise changes may not help.

I’ve learnt that you have to listen to your body, I’m very strong minded, and hate this Hashimoto’s, but I’ve learnt you have to go with the flow and rest when your body is telling you to and not fight it.

No point buggering yourself up, as your thyroid plays up if you do.

I know it’s frustrating, but I started to keep a diary, which helps look back at the days when I felt awful, stress is also a big part as well.

Before my period I crave chocolate and crisps, I’m no saint and sometimes I fall of the healthy wagon.

Night night

Good luck at the doctors

Peanut31

[Marz in reply to Aretak]

How did your appointment go ? Did you get your dose increased and other tests done ? Did you get your copies of results ? 😊

[Aretak in reply to Marz]

Hi Marz,

Yes I did see my GP. Luckily I got my Levothyroxine increased so I'm taking 75mcg. I already got my appointment for blood test on the 9 of July. They are going to test everything, folate, ferritin etc, even test for coeliac too. I'm really curious about the results. I do feel better, less tired. Still trying to loose a bit of weight, searching how to reduce mucin too. By the way, I loved your post about the olive trees. Must be an amazing place where you live☺️

[Marz in reply to Aretak]

Why do you have to wait so long ? Madness. In cash strapped Greece I can drive to the next village and walk in off the street and have what I need tested - OK it's private but worth every lepta !

healthunlocked.com/api/redi...

The above link takes you to the Private Testing on Thyroid UK - and today is Special Offers Day - did you see the alert ?

medichecks.com/thyroid-heal...

[Aretak in reply to Marz]

I have to wait 6 weeks as they increased my dose as I used to take 50 mcg. I hope I'll get good results and really hope they won't put me back on low dosage. I don't really feel tired anymore. It could change in the future I know. My gut is a bit upside down though. I quit gluten and dairy(ages ago) feel so much better as before I was bloated all the time. I still have some digestive problems but no bloating. Did read that for some people it takes months to heal the gut, for others it takes even years! Or maybe I got IBS? It is very common. Should find out in time.

[Marz in reply to Aretak]

Yes guts take time to heal. I had Gut TB and have had Crohns for almost 50 years. Gluten is everywhere - even in your vitamins !

[Aretak]

Thank you for your advice🙂 I do have some dark chocolate and love my herbal teas. It's the water I keep forgetting, it must be filtered as chlorine and fluoride aren't good for you really. Don't like that taste anyway. I do love walking, especially nature walks in my free time. Last weekend I did have a terrible experience though. On Saturday felt real tired stomach pain so couldn't go anywhere. On Sunday me and my partner decided to go and visit Reigate hill for the first time. By the time we got up I could hardly breathe, felt awfully tired and my stomach pains started again+ my head was red as a tomato! We were in a beautiful place but I felt like I'm in hell. It made me really sad, luckily had Monday bank holiday so I could rest.

Thank you again for the info.

Goodnight and sleep well,

Aretak

[Flecmac in reply to Aretak]

Thanks to Peanut31 private messaging me about her private endo who I was set to go and see, I didn’t bother. There are no other endos private or nhs in my area who specialise in thyroid disease. I also need to change GP but unfortunately there are none that I can find in my area and it could be a case of out of frying pan into fire, with having to travel far when feeling unwell. I am recovering from a major op and have written letters to CEO of hospital, PALS, and CCG complaining about my nhs endo who was hopeless, rude, arrogant etc. In the report back he denies everything!!!! It’s shocking that we are left to research tirelessly and fight to get treatment. Scripts have been free for me since last March, why should I have to pay for everything, especially as I have no pension for at least another 5 years!!!

Re dark chocolate I buy 85% green and blacks when on offer and it’s soya free, but not the ones with less cocoa solids. Soya apparently bad for thyroid and Ive noticed that sot of gluten free products have soya hidden in there! Stick with Pilates when you can, Ive been going for 11 years, it’s very good, just start at low level and increase gradually, but drop back if any problems, I will be back to level one and only on easier ones since my op.....I was on level 4/5 on most before!

Good luck today!!!

[Aretak in reply to Flecmac]

Thank you mcdermott, I will look out for soy. Unfortunately I will see my GP next Monday😢😢😢😢 I mean HOPING to see her as this morning I was fobbed off by the receptionist as they got full. I work 7am-7pm and it's hard to get a morning off + have to travel to work. Until then I still be under medicated.

[muddlemand]

No, I was told they don't refer to the consultant any more - the GP is in contact with the constultant, who tells them what to prescribe. Five years ago I was under the consultant though, but that time I was seriously ill (almost an ambulance case) with overactive thyroid whereas this time (end of 2017) I was only begging for the blood tests that my consultant from back then said I must have yearly - which the GP can no longer authorise.

[Aretak in reply to muddlemand]

Hi muddlemand, thanks for the info. I'm still at the beginning of this journey to sort myself out. I guess if the GP fails, I will have to deal with private blood tests ( medichecks/bluehorizon) and if things really turn bad then private endo as well.

[muddlemand in reply to Aretak]

My GP acted on the blood tests I'd had done privately - I don't know how usual that is, whether i'm just very lucky with my GP. She went on to prescribe me Vit D and iron based on those tests, and do further investigations into other things. I'm just one example though - and also very much at the beginning of the fact-finding stage.!

[Aretak in reply to muddlemand]

As I read other people's experiences here, I think you are lucky🙂

[muddlemand in reply to Aretak]

I've just changed to this GP, and sought word of mouth recommendations from people locally. She's so sought-after that it's impossible to see her at less than three weeks' notice. This practice is five miles from my old one and I wish i'd changed years ago! Open-minded GPs - I mean *fair* minded, really - are gold dust. But it did require me taking action, deciding what I had wasn't good enough and acting on it.

A few years ago I wasn't well enough to change my GP (too big an undertaking, plus I wasn't driving for several years), and I also know many have no better choice locally - but twenty years ago I wasn't confident enough to change my GP. When you haven't done it before you don't know how simple it is and it feels very, something, presumptuous? or something. It feels like a big deal. It isn't! Let's spread the word!