NHS Endo appointment Nottm yesterday (Thurs), disgusted!!

[Flecmac]

My endo appointment did not go well yesterday. My first appointment in October was with Registrar, but this time it was with the main man in endocrinology in Nottingham, he was rude, ignorant, arrogant and did not listen to anything I was saying. He said with my results he would not be seeing me again!!! He did bloods for Thyroid, calcium and vit D at my request as I am taking supplements, but refused to repeat antibodies and b12, saying he will not waste nhs money!!! NHS have wasted masses on me over at least past 15 years looking at and treating each symptom separately and unsuccessfully. I feel deflated and drained and I have nowhere to go next except private which will cost a bomb!! He even said that if he felt 25 mcg was too much he would advise my GP to stop it again!! He said it’s dangerous for tsh to go too low.

He said my TFT's taken in October were all normal and that I was converting T4 to T3 fine.

TSH 3.8 (0.3-5.5) (TSH was 3.4 recently at GP, range changed to 0.5-4.4),

T4 10.7 (10.0-19.8),

T3 4.7 (3.5-6.7) and

TPO antibodies in September with GP 1300 (0.0-60)

Vitamin D 50 (24-167)

B12 704 (190-800)

Folate 8.6 (3.0-17.0)

Ferritin 75 (12.0-300) Sept was 117 (12.0-300) at GP

Cortisol 166 nmol/L (no range)

Short sycanthen test was normal

He said he sees lots of people like me and there is no reason to treat with these results!!!

He used a stupid analogy to explain why he should not treat me with normal results....

"Why don't you go and see a haematologist?"

I said "Why would I do that?"

He said "If your haemaglobin is normal then you should ask him for a blood transfusion"!!

He only glanced at my 2 x A4 list of symptoms from thyroid uk site which were virtually ALL ticked and just pointed to tinnitus and cholesterol saying "they relate to lots of medical problems". He just was not having any of it, I showed him my print outs of my research and some recommended on here, but he wasn't interested, he just said that's thier opinion, not mine!! He told me to go private, then he said but if you came to see me I would say the same as I am today, which is obvious as he wouldnt be able to work for nhs if he was working outside the nhs guidelines privately.

He told me (using a word I’d never heard of, which meant hypochondriac basically!) that I worried about my health too much, hypo something. Just found it in wiki....... Hypochondriasis!!!

He also told me to book a nice holiday!! I said I had to cancel my holiday as I was so ill!! I had been to my GP repeatedly to try to sort myself out before our departure and I was in A and E 4 times altogether as my GP said if you're in pain, go to A and E they will sort you out, but funnily enough A and E said go back to your GP and tell them to look into your health problems we can't do that here (which I knew) I had a tight chest and palpitations and was in pain!! I had been taken of 25mcg thyroxine the year before.

I have an appointment next Wednesday with Thoracic surgeon after rheumatologist spotted a vertebral mass on my spine, nodule on my lung and bulging disc. I am so worried what this could be. The next day I have one at the spinal unit. My husband was diagnosed with prostate cancer in November, we both feel so deflated and don't know which way to turn.

I just don't know what to do now, I just feel so disgusted!!!

My husband was with me and couldn't believe wht he was hearing.

If anyone else has seen this idiot please pm me and let me know what you thought. You will know who I am talking about!!

Many thanks for any assistance.

[KatVonB]

Hi

I am so sorry you have had such an awful experience☹️

Goodness me this guy sounds like he thinks hes the bees knees?!!

He must clearly have been offended at the fact you approached him with legitimate knowledge rather than random suggestions.

I would put in a complaint and try to see someone privately as it sounds to me there’s a lot going on with your health which needs a one massive full check up. I know money is precious, but i would rather spend it on a complete health check and feel satisfied than wait around for someone to fob me off and belittle my symptoms.

Take some time out as that sounds like an awful experience xxxxx

[Flecmac in reply to KatVonB]

Thankyou. I have sent an email to NICE, but no idea if that will do any good!

[Marz in reply to Flecmac]

You need a plan Will try and get my head together in the morning

[Flecmac in reply to Marz]

You take care, no probs.

[Hidden in reply to Flecmac]

If you wish to make a complaint then you need to do that through PAL’s at the relevant hospital

[Clutter]

McDermott,

You don't have to tolerate such rudeness. Write a letter of complaint to the hospital PALS.

If you want recommendations for private endos email [e-mail] for a list of member recommended endos. You can also write a post asking members to send recommendations and feedback via private messages.

Thyroid peroxidase (TPO) antibodies were high in September and confirm autoimmune thyroiditis (Hashimoto's). There's no point in retesting once you have a confirmation of Hashimoto's. Your endo could have explained that without being offensive. There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

You are undermedicated to have TSH 3.84 while taking Levothyroxine. Not sure whether GP will increase dose until endo discharges you but it is worth asking. If your doctors aren't helpful consider buying your own Levothyroxine and self-medicating. If symptoms aren't improved within 3-6 months of being optimally dosed then it is likely your symptoms aren't to do with thyroid.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

VitD is insufficient at 50. >75 is replete and 100-150 is optimal. I would supplement 5,000iu D3 for 6-8 weeks and then reduce to 5,000iu alternate days and retest late April. Take D3 4 hours away from Levothyroxine.

Ferritin 75 is adequate but ferritin is optimal halfway through range. You can raise ferritin by supplementing iron with 1000mg vitamin C to aid absorption and minimise constipation. Iron should also be taken 4 hours away from Levothyroxine.

B12 and folate are good.

[Flecmac in reply to Clutter]

Thanks. I have posted before, I came on around September. I have been gluten free since November, no change so far. I took your advice to take vit D with K, I use magnesium oil and take selenium. I thought about pals, my son works at hospital and doesn’t really rate them, others have said the same, so it put me off. Endo is pretty untouchable I think, especially as he’s following nhs guidelines. I know of a private endo not too far away and I did have an appointment in September, but I was too ill to go and had to cancel 24 hours before or I would have had to pay the full £250. Meanwhile my GP finally referred me to Endo and rheumatology after I had pestered her for some time, so got a bit stuck in the system. Then my husbands diagnosis! It’s been so full on. We have both had so many tests, all sorts of scans and lots of appointments, and Xmas in between, we haven’t had a minute. I also persuaded GP to put me back on thyroxine before Xmas, they was very reluctant and only agreed to 25mcg, which they stopped two years ago. I don’t think they will increase without Endo say so, which he won’t, and he said depending on results he may stop it as it’s dangerous. I was told all this by my GP 7 years ago when I saw a private dr who suggested a trial of levo, but GP reduced then after 3-4 years stopped.

I have all the info including pulse article, he wasn’t interested in anything. Thanks for all your help. I will order vit c.

[NatChap]

I saw an endo at Nottingham but the one I saw, whilst not particularly helpful, didn't object to me taking NDT and offered to increase my dose of levo if ever I wanted to go back to it or couldn't get my NDT anymore.

[Flecmac in reply to NatChap]

Could you pm his name please. Thank you.

[Peanut31]

My endocrinologist told me to go on holiday too, must be in the NHS guidance booklet.

I saw one in Nottingham at BMI, wonder if it was the same one? Dr M ( can’t mention his full name due to forum guidelines).

He refused me Medication too saying he couldn’t help further, although he was friendly at first, but when he just kept testing vitamins all the time I questioned this.

Best wishes

Peanut31

[Peanut31 in reply to Peanut31]

Sent you a PM.

[SlowDragon Administrator]

What a disgusting man. Sorry you had to experience that

You are clearly under medicated to have TSH so high on Levothyroxine. Most patients feel well with TSH between 0.2 and 1.0

Your FT4 is rock bottom and should be near top of range and FT3 is too low, should be at least above 5

Ask GP for 25mcg dose increase

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne At

[e-mail]

Also request the list of recommended thyroid specialists

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

Vitamin D is much too low, should be around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function of Hashimoto's

Ferritin could be higher. If you like liver eating once a week will help improve

A good vitamin B complex may be helpful. With Hashimoto's we can be low in other B vitamins

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

[Flecmac in reply to SlowDragon]

Thanks, I’m already taking better you vit d and k spray, b vits spray and selenium drops. I have all the info from here inc that one, they don’t want to read anything. And wouldn’t action anything from there anyway. My GP reluctantly put me back on 25mcg and would only increase if endo said so and he’s threatened to stop it if he thinks fit. I have requested list of recommended endos, however the feedback I’ve had of those in my area are poor, even private!

[SlowDragon Administrator in reply to Flecmac]

Find a new GP

The Better You vitamin D comes in different strengths.

Many need 3000iu or 5000iu daily.

Until I got on adequate Levo AND T3 I needed 6000iu (2 x 3000iu ) plus sunshine just to keep level

How much Better You are you taking?

Folate might need a boost with good vitamin B complex

Your ferritin is dropping. Eating liver once a week should help improve

But you are under medicated to have TSH so high and FT4 at rock bottom

[Flecmac in reply to SlowDragon]

Thanks. I take 3000 vitamin d and k spray, not sure about the k, don’t want to overdose on that. No Gp in this area would be any better they are all the same here, hands are tied with guidelines. I eat liver but not every week, I suffer constipation.

[SlowDragon Administrator in reply to Flecmac]

You probably want to double vitamin D dose for 6-8 weeks.

Plus magnesium works with vitamin D and also helps constipation

Importance of magnesium

hypothyroidmom.com/two-vita...

magnesiumeducation.com/how-...

naturopathconnect.com/artic...

articles.mercola.com/vitami...

[Flecmac in reply to SlowDragon]

Thanks. I use magnesium topically. Wouldn’t doubling my dose increase the vit k too much though?

[SlowDragon Administrator in reply to Flecmac]

You can get vitamin D mouth spray without vitamin K - Better You do 3000iu or 5000iu

Topical magnesium will not improve constipation

You would need to actually take some. Calm vitality magnesium powder is cheap and easy to use (start with low dose and increase slowly)

[Flecmac in reply to SlowDragon]

I have stocked up on the combined d and k now. They don't do 5000 anymore. I'm not using Magnesium for constipation, just to supplement.

[Hidden]

I see an endocrinologist in Nottingham. I don’t recognise the person you are describing. I see mine at one of the two Nottingham hospitals

[Flecmac in reply to Hidden]

Could you tell me in pm who you see and how good are they, I have all symptoms of hypothyroidism. Thanks.

[Hidden in reply to Flecmac]

I have pm’d you

[Flecmac in reply to Hidden]

Thanks, I have pm’d you too.

[Hidden in reply to Flecmac]

I’ve replied

[Flecmac in reply to Hidden]

I’ve pm’d you, thanks.

[Flecmac]

Thanks. Don't worry I have written the letter to the CEO and it will be posted tomorrow, my son works for A and E and he said the same thing!!!! Much appreciated!!! No email contact though which means snail post!!!

[Hillwoman in reply to Flecmac]

I agree with Grincho that PALS only exist to cut off complaints - I've had that experience too. My husband has twice complained to hospital Chief Execs, or their equivalent, and had a much more positive response.

Good luck.

[Flecmac in reply to Hillwoman]

Many, many thanks, that’s good to hear, we have to try everything. We all need to make a stand now and write to these people. I have written to NICE and will write to my MP too. Needs to be done all over the country, so as many people as possible!!

[marigold22 in reply to Hillwoman]

I went to a PALS meeting once; there were about 60 people there; a few had had cancer operations go wrong so my complaint about an endo. didn't get heard.

[Flecmac in reply to marigold22]

Exactly, that’s the problem!! Because we don’t all run the risk of dropping dead in front of them, they are happy to allow thousands upon thousands of us crawl from one day to the next for our entire lives!!! They won’t listen to one person or a small crowd, it has to be all over the country, get typing everyone!!

[marigold22]

Very very sadly, there are many endocrinologists around like yours. Even professors of endocrinology; so ignorant and rude.

[Flecmac in reply to marigold22]

Correct. We all need to write to CEO of all the hospitals if anyone is ever going to listen. Also NICE, which is what I have done as well as our local MP’s.

[marigold22 in reply to Flecmac]

bbc.com/news/health-42838821

I've just read this article on the Health section of BBC website. The University of Birmingham has invented a handheld device sequences human genome. Prof Nicholas Loman said "sequencing technology has the potential to change the way we do medicine". It was a prof of endocrinology in Birmingham who nearly killed me. Shocking that they don't know anything about the thyroid.