My first (and last) thyroid appt with NHS Endo....

[Prochida]

Hi All,

I thought I'd share my frustrating , yet laughable experience with you, my first and last NHS appointment with my Endo, which I had yesterday. Luckily I had read about other people's experiences on here, so I kind of took what she said with a pinch of salt, knowing that she wouldn't have been much help! I undertook my own full thyroid profile blood tests with Genova Diagnostics, so brought these along to my appointment.

The Endo just focussed on my TSH level (which was a bit elevated) and totally ignored my Anti-bodies results. I kept bringing up the anti-body results, only to be told ' the NHS doesn't use the anti-body results as these are inaccurate and invalid, everybody has some anti-bodies present in their blood......' I wanted to laugh, especially seeing that I had asked her how long she had been in practice for and she said over 25 years! Wow! So the NHS will totally ignore anti-bodies....? I said to her 'surely that is an indicator of Hashimotos or Hypothyroidism.......?' She said only if your TSH level goes up to 10, then it is an indication of Hypothyroidism! I knew whatever she said was absolute rubbish and was a waste of my time being there.

I finally pressed her on nutrition and diet, asking if there was anything I should avoid / or start eating...I said I've been informed that gluten isn't good if you have a thyroid condition? She said, 'oh no, that's rubbish, you can eat bread, pasta...gluten doesn't effect the thyroid at all'. I explained all of my symptoms (constantly feeling cold, weight gain and difficulty in shifting it, hair loss, brain fog, low energy, fatigue, high blood pressure, high chloresterol) and she just said, 'Oh these symptoms are rather generic and could relate to anything, it's not necessary your thyroid'. And with that, she said she was going to discharge me from the Thyroid clinic as 'I had nothing to worry about'. I'm so thankful for this website (and others) which offer such a wealth of information, at least I now know the route to self medicate and get myself better.

Below are my blood tests I took with Genova Diagnostics

Central Thyroid Regulation and Activity

Total Thyroxine (T4) 103 (58 - 161 nmol/L)

TSH 4.38 (0.40 – 4.00 mIU/L) *This is flagged up as high

Free Thyroxine (FT4) 15.1 (11.5 – 22.7 pmol/L)

Peripheral Thyroid Function

Free T3 (FT3) 5.3 (2.8 – 6.5 pmol/L)

FT4 : FT3 Ratio 2.8 (2.0 – 4.5 Ratio)

Reverse T3 (RT3) 0.27 (0.14 – 0.54 nmol/L)

Thyroid Auto Immunity

Thyroglobulin (TG) 94 ( < 40 IU/mL) *This is flagged up as high

Peroxidase (TPO) 39 ( < 35 IU/mL) *This is flagged up as high

Thanks for reading!

Prochida xx

[Heloise]

I hope she realized she had met her match after your appointment. I just want to say "Bravo". I posted the videos about antibodies yesterday and it burns me that she would say what she said. Sometimes these attacks go on for years making people miserable.

These are the suggested lab ranges from STTM. stopthethyroidmadness.com/l...

It would be nice to know about iron and cortisol since they are very relevant when taking hormones. I also have posted videos by Dr. Bergman and this one which give you a more holistic view of hormones in general and you really need to know.

healthunlocked.com/thyroidu...

youtube.com/watch?v=IIX2Z_i...(Not working as expected?)

youtube.com/watch?v=3_uaUXi...(Not working as expected?)

youtube.com/watch?v=Z5SaM0R...(Not working as expected?)

youtube.com/watch?v=cIKmuIf...(Not working as expected?)

[markg73]

Hi Prochida,

My experience was similar with my endo where I live.

I was told " you have a unknown medical condition."

I couldn't it believe! I was promptly told that there was nothing that could be done and I was sent packing.

I now do things myself.

Best wishes.

M.

[greygoose]

Isn't it pathetic!!! But, strictly speaking, she was right about one thing : gluten doesn't affect the gland itself, it affects the antibodlies. But as she doesn't recognise antibodies as being a problem, she wouldn't know about that, would she! Such a disgrace!

[kk12]

This is really shocking! But unfortunately very common - what's happening with the world today as regards the thyroid! Maybe it's not a " trendy" illness to have or maybe does it cost too much to treat? It's scandalous!

[Hidden in reply to kk12]

These people are obviously not specialists in thryoidism, of any kind. It is a disgrace that people are referred to them for thyroidism - and you really should write to your GP and say so. And your MP of course. Copy it to anyone else you can think of - here's a site where you can post a short case (more or less what you've posted here) patientopinion.org.uk/ And there's probably a local Medical Council thingy. Currently they're just getting away with leaving people ill. Extraordinary. People who haven't got sites like ours to help them would be left in despair by this.

Good luck in your search for better health.

[lesleypearson]

This makes me feel better about my own one and only appointment. The doctor was more concerned about why I was at that particular hospital when my postal address indicated I live closer to another (I dont actually !) I was told that the hospital that diagnosed me many years ago did things very differently and she inferred that my mega high levels of antibodies meant nothing and that I should probably not have been prescribed thyroxine. I came away feeling really low as I had really high hopes of the 'specialist' understanding stuff that the GP does not. Obviously this is very common!

[alangardner]

this just goes to PROVE that there are still some within the nhs -and elsewhere-- that have the automated mindset that ' I have been doing this job for long enough AND I KNOW EVERYTHING ABOUT IT AND NO-ONE CAN TEACH ME ANYTHING ......god help the people over the past 30+ years who have had heart problems if dr Cristian barnard had that attitude about heart replacements ----- this may be an extreme example ,but , is typical of some of these so called 'head in the sand IDIOTS ' that are just short of snake oil salesmen/women ...... no matter what you do there IS ALWAYS room for improvement - especially in the medical profession .........sorry for the long rant but this kind of attitude concerns me enormously ......alan x

[Hidden in reply to alangardner]

the killer is, Alan, that we don't seem to be able to interest anyone in the problem. I find the stonewalling that goes on absolutely extraordinary. To the extent that the old saw about paranoia comes to mind frequently ('just because they call you paranoid doesn't mean the b*sta*rds aren't out to get you'). I can only think it is because thyroidisms (various) present in so many different ways and actually require such subtle treatment that the medical profession has taken a decision somewhere high up that it simply can't be a*sed to spend the time and money to make us well. So anyone who isn't helped by T4-only treatment, or whose results look odd, or whose results and symptoms don't usually present like that, is simply ignored.

[alangardner in reply to Hidden]

hi there Humphrey , I get what your thinking ,but, I feel that the problem is more that 'some' of these so called doctors/specialists cannot or will not be a++ed to gain the correct information and treatments available to them whether this is due to apathy ,laziness or ignorance or even indeed pressure from other areas would remain to be seen . In our case I can categorically state that we have only overcome many health situations both mine and my lady's because we have an absolutely superb gp -- who openly admitted when my lady was 1st diagnosed that he knew very little about thyroid disease , but he actively worked on this and is actively teaching student doctors [ he happens to be a lecturing consultant for a major hosp.trust ] ALL of the options open for the betterment of the health of THEIR PATIENTS.......I do realise that a gp of his calibre are few and far between ,but, there are some of them out there . alan xx

b.t.w. my lady has gone from a tsh of 129+ to about 1 ft3 &ft4 have come from virtualy zero to foating on the higher range with no massive problems over 3 years and from over 40 tablets per day down to 3 per day and is now massively better because of the care that she has had ......alan xx

[CatSlave]

Prochida:

I can totally sympathise! My own "specialist" thyroid endo visits were similarly disappointing. It seems all too common, as you say. What are you planning to do next?

[Jacqueline6868]

Hi, I agree NHS Endod are a waste of time! I started reading this website a few weeks ago and havewerentn to a private Endo now trialling NDT on week 2. The Endo said I was hypothyroid on Levothyroxine and T3 and would notice difference on NDT very quickly. I tried not.to get my hopes up too much. After first night of taking NDT I noticed a difference, I woke up realising my hands and joints werent aching and stiff, my headaches had stopped and I didnt feel so tired. 1 week later my brains much improved, energy levels, mood better and the pain in my achilles and feer virtually gone. Im hoping when I weigh myself ive lost weight as ive bern able to be far more active. Im sure my symptoms were causd my old medicines as they got worse just after I took them. I would recommend changing to a good private Endo who prescribes NDT.

[moosecat]

Hi, this is the first time I have posted on the site. Your reply intrigued me. How can a person make an appointment to see an NHS consultant if the GP does not arrange it? My GP has always let me down. I don't even bother trying now. I order my medication as repeat prescriptions and apart from that I have given up. Reading your reply gave me a spark of hope.

[humanbean in reply to moosecat]

If your GP agrees to a referral to an endo (or any other type of consultant) you have the right to choose which endo you are referred to. You are not restricted to going to your nearest endocrinology department.

[SilverAvocado]

I've got a newbie question about this story. Are Hashimoto antibodies like adrenal exhaustion, something that the NHS doesn't recognise?

[eeng in reply to SilverAvocado]

My NHS doctor who diagnosed me with hypothyroidism did test my blood for antibodies the first time, but not subsequently. I think she took my elevated TSH (7ish) more seriously when she saw that the antibodies were raised (3-400 level). Having high levels of antibodies should alert a doctor to the fact that the patient will probably deteriorate over time and need an increasing level of medication as the antibodies destroy the Thyroid. The treatment will otherwise be the same as it would for someone without antibodies.

[Prochida]

Thanks for all your replies - it's comforting to know that we're not alone and can help each other by becoming more knowledgeable about our condition and how to make ourselves feel better via NDT, vitamins / minerals, diet, etc...

Thanks everyone!

Prochida xx

[Prochida]

Hi Grace 27,

Thanks very much for your reply - I'm based in London, so unfortunately they wouldn't be able to help me.

Thanks anyway!

Prochida x

[BeansMummy]

It isn't good, but at least you went in prepared, Prochida. I hate the "I'm a doctor, but you are an idiot" scenario.

What I find scary is all the other people who have had the same problems, but who don't get the support from forums like this, or have any knowledge of their illnesses (which was me, when first diagnosed). I guess they have all gone home, suffering and still feeling ill, unsupported, knowing that they are ill but getting no help from the very people who are "qualified" to help.

And just for info, the last endo I saw was supportive of me going gluten-free to see it would help reduce antibodies. Maybe they like to pick and choose which bits of our illnesses they will acknowledge.

[Hidden]

Hi I live in Worcestershire and near Warwickshire , can u please send me details of the two endos specialists in my area

Best regards

Morag

[Fr23]

Hi there. I live in Warwickshire ,and winder if you can pm me with their details? Thanks

[belwom]

Is it not time for another petition about the chaos and lack of consensus in thyroid disease treatment? I have been referred to a third hospital for hypothyroidism but do not hold out high hopes. My GP prescribed 25 mcg of levothyroxine when my antibodies where raised almost 400 times, which is the current thinking to nip things in the bud. He diagnosed my TSH of 4,75 as hypothyroidism as the hospital lab range the surgery uses cuts off at 4.25. Other doctors do not start treating until TSH has reached 10, which in some people it never may but they may still feel very unwell. Chaos or postcode lottery, the patients suffer the ill effects. Which hospital did you go to Prochida?

[Hezziet]

I have just seen my first Endo.. went private via my husbands BUPA cover as my GP could not get T3 & T4 tested... what a waste of £100. Same story with regards to my high antibodies etc. So very very angry and frustrated.. going to post the results that I have on the forum. They are the only people that have helped me so far, i.e. advice on vitamins etc, which I had to suggest my GP runs tests for me...

[naile]

I have a serious problem with a sandy scalp with growthis on it. Sometimes the itching drives me crazy. My Dr. froze a few of the growthis & told me to come back in 6 months. I have no thyroid. Has anyone else experienced this problems? BA

[boneandco]

Dear Prochida,

I have the same problem, I have just put in a post. I don't understand those readings but I have put in mine. You are right, they just work on the TSH (mine was 9.2)

I am so frustrated, I have all the symptoms you do but how can you rely on self medication especially when you are on medication for other problems ...

[Girlpower]

That's completely outrageous - they have such poor knowledge if the subject they're supposed to "consult" on.

Mine told me they didn't believe in T3, go and drink more coffee in response to the crushing tiredness and other hypo symptoms! They have the ability to leave you feeling so belittled with their patronisations.

Thank goodness for the care and advice we can find on this site so we can take our health into our own hands and not in those of the incompetents!

Take care,

Sarah x

[Bungy221089]

Thanks for posting. I don't bother to see Endos anymore either. I went for 5 years undiagnosed after visiting GPs, specialists, everyone. They all said everything was fine too until finally I had had enough and went abroad. In two weeks, it was done and dusted with a huge hot nodule growing on my thyroid, too large to operate on. It was removed in 2007 but I still don't feel well with the same symptoms as you, falling hair, weight gain, gluten and food allergies, low energy etc. etc. I don't know who to turn to anymore because I have practically given in and given up. Does anyone know of a miracle thyroid specialist in London or even in France or abroad please? Thank you.